Conceiving People: Genetic Knowledge and the Ethics of Sperm and Egg Donation, by Daniel Groll, is a fascinating exploration of attitudes about whether donor offspring are entitled to knowledge of their donors, but the issues and questions it raises are pertinent to adoptees and NPEs/MPEs as well. Comprehensive and academic in approach, it may be challenging to readers not well-versed in philosophical discourse, but it’s key reading for anyone with a stake in the debate over access to genetic knowledge. And although Groll ultimately stands against anonymity in donor conception, some NPEs and MPEs may take exception to some of the arguments that led him there. Therefore, we asked him to address some of those arguments, and he readily agreed.Severance was the target of a critical article last year in a publication called Real Life that accused it of numerous transgressions, including promoting bionormativity. It insisted that the magazine’s content poses genetic family as measured by DNA as “the norm against which all forms of family should be judged.” It further states that if we view the genetic family as something from which one can be severed, non-genetic family “will inevitably be understood as secondary, extraneous, and even pathological.” Additionally, it charges that those of us looking for genetic information are indicating that “biogenetic kinship is the most true, essential, and valid form of family” and that such a belief places queer families in “legally precarious positions but undermines the larger value of ‘love makes a family’ for all families.” The argument rejects the idea that there can be a desire to know one’s genetic history that is apolitical. Clearly, I don’t believe Severance makes any such assertions, and based on having heard hundreds of stories and experiences, it’s obvious that most of us grew up with non-genetic families. I, for example, was raised by a man who was not my father. He was my family. I didn’t wish to have another father, but I did wish to know who my biological father was. I didn’t imagine my biological family would be a better family, or a more real family. I simply wished, as I believe most people who lack this information do, to know from whom I got my genes. My question is, how does simply wanting that information valorize traditional families or diminish nontraditional families?

Before I answer this, I just want to explain my connection to the issue of donor conception since people inevitably wonder about it. I am a known donor to close friends who have two children. The children know both who and what I am in relation to them. Our families are in regular contact. From the get-go, everyone agreed there would be no secrets and that we all need to be open to how their children understand their experience and let that guide us. Maybe the fact that I’m a donor will cause some of your readers to stop reading, but I hope not.

On to your question! One thing I want to make clear is that I think people who create children with donated gametes should not use an anonymous donor. So I am totally with you: I don’t think that wanting genetic knowledge—as I call it—necessarily or always or even usually valorizes traditional families or diminishes nontraditional families. One thing I try to do in my book is to make exactly this case. There are really good reasons for taking people’s desire for genetic knowledge seriously without committing ourselves to the view (which I don’t subscribe to) that biological parents are normally the best parents or that the traditional family form—of a man and woman and children that are genetically related to both parents—is somehow the best kind of family.

Having said that, I think it’s worth taking seriously the idea that an interest in genetic knowledge is not apolitical, if that means that it floats free from, or exists independently of, the contingent cultural norms, practices. and institutions that shape our desires. I want to be really clear: this isn’t a point about the desire for genetic knowledge in particular. Rather, I don’t think we should see any desire as obviously apolitical. Even what we might think of as our most basic desires—for sustenance or for social connection—take the particular forms they do as a result of the culture they are embedded in. We might put it this way: all of our desires are filtered through, or suffused with, the culture (the norms, the values, the practices) they are located in.

As a result, I think it is always worthwhile to ask two questions about our wants, desires. and interests: 1. “In what ways have they been shaped by our cultural milieu?” and 2. “Is that shaping a good or a bad thing?” In the book, I talk about certain gendered desires – like, for example, a boy’s desire to not cry in front of his friends—as examples of desires that are a) clearly shaped by our cultural milieu and b) a bad thing.

Now, I don’t think the desire for genetic knowledge is like that. I’ve already said that I think we should take people’s desire for genetic knowledge seriously and that doing so leads to the conclusion that people shouldn’t use anonymous donors. But I think it’s undeniable that we live in a culture that highly valorizes genetic connectedness and often tells simplistic, reductive stories about family resemblance, genetic ties, the significance of “blood” etc. I think it’s worthwhile for everyone—not just donor conceived people or others who lack genetic knowledge—to interrogate their commitments about the significance of genetic ties in light of the culture we’re in. We should all ask, “Why do I, or do people in general, care about this so much?” and “Is it a good thing or a bad thing?” I try to give an account in the book about why many people care about genetic knowledge in a way that shows how it can be a source of meaning. But I also try to show that, oftentimes, people’s reasons for being attached to genetic knowledge are shaped by forces that do unjustifiably valorize the biogenetic conception of the family.

Why can’t I uphold the rights of people who wish to create nontraditional families and still want my genetic information? Why is it an either/or? Why is it not acceptable to honor and uphold nontraditional families and at the same time say that genetic knowledge also matters?

I think it is acceptable! Indeed, that’s the position I try to carve out in the book: we shouldn’t see the interest in genetic knowledge as ineluctably bound up with biogenetic normativity. One can do exactly what you say: honor and uphold nontraditional families and at the same time say that genetic knowledge matters.

A problem emerges, however, when people put an emphasis on the significance of genetic knowledge—and genetic ties— that automatically downgrades the status of non-traditional families to “second best.” I’ve seen this attitude on display in a number of contexts. Sometimes the idea is that someone who isn’t raised by their genetic parents is (usually, though not always) worse off for it. Sometimes the idea is that a life without genetic knowledge is necessarily and seriously deficient. Sometimes the idea is that contributing gametes for the purposes of procreation without the intention of raising the resulting child is, by itself, morally unacceptable (equivalent, perhaps, to abandoning one’s child). I take all of those ideas to downgrade—if not outright reject—non-traditional family forms. So to the extent people’s attachment to genetic knowledge goes through those ideas, then I think there is a tension between caring about genetic knowledge and honoring non-traditional family forms. But again, I have no objections whatsoever to your way of thinking about things.

It seems that the objection to wanting genetic knowledge asserted by some individuals creating nontraditional families has to do with the fear that their children will be somehow less connected or see their parents as somehow less than traditional parents when I believe there’s no research or even anecdotal experience to suggest that is true. Is that right?

I think you’re right. Certainly, parents who do not want their donor conceived children to know that they are donor conceived sometimes cite as the reason that they’re worried the child will be less connected to their non-genetic parent. One thing seems clear: when people find out later in life they are donor conceived, that very often does cause a rupture. But the issue there seems to be mostly about secrecy and deception, and not about the fact of genetic non-relatedness itself. As far as I know, there is no evidence that people who are donor conceived and have never been led to believe otherwise are generally less connected to their non-genetic parent. Part of the issue here, though, is that we would need a better of understanding of what “less connected” even means. One thing I would definitely want to reject is that “being connected” is a zero-sum game so that if a donor conceived person forms a connection to their donor they are thereby less connected to their social parents.

It’s important to note here that it’s only some families that can realistically keep their donor conceived child in the dark, namely heteronormative families that can “pass” as “traditional” families (i.e. families where children are genetically related to both parents). I think doing so is, generally speaking, deceptive and wrong. I think oftentimes a parent’s worry that their child will not connect to them in the same way if they (the child) know they are donor conceived reflects the parent’s own preconceptions about the significance of genetic ties as well as, sometimes, shame about not being able to conceive (particularly for men).

At some point in Conceiving People you say that people can be influenced or educated to believe that genetic history is not as significant as some would have us believe. There seems to be no evidence to assert that genetic information is unimportant. On what basis can that claim be made?

This is a great question. One thing to say up front: clearly genetic information can be super important for medical reasons. I do not want to deny that! Nor do I want to suggest that we should try to “educate” people to believe otherwise. But the medical reasons for wanting genetic knowledge are not—for many donor conceived people—the whole story: if it were possible to get the relevant medical information without knowing who your genetic parents are, many donor conceived people would still want to know who their genetic parents are. So, when I suggest that maybe we can move people toward caring less about genetic knowledge, I don’t mean that people should care less about the medical reasons for wanting genetic knowledge. I mean, rather, that perhaps people can be moved to care less about genetic knowledge for the reasons that go beyond the medical reasons.

What do I mean when I say that perhaps people can be “moved” in this way? To answer this question, let me lay out one key idea I argue for: while genetic knowledge can provide a rich source of meaning in answering the question “Who am I?”, I don’t think it is either the only source or a necessary source. I think there are ways of telling a rich and truly complete story about who you are as a person that doesn’t put a lot of emphasis on genetic lineage. Now combine that thought with one I discussed above, namely that we live in a society that puts a lot of emphasis (in my view, undue emphasis) on the significance of genetic ties. These two thoughts together suggest one way that we might move people—everyone!—to care less about genetic knowledge, namely by working to make society less bionormative overall, where that means we try to change our cultural schema so that lacking genetic knowledge isn’t necessarily seen as having this massive void in one’s life. That’s a tall order (as are all calls to effect change at a societal level). I don’t have anything particularly insightful to say about how to go about doing that.

At the individual level, one thing I say in the book is that people have a choice about how to construct their identities, about what parts of their life to treat as important and which to treat as comparatively unimportant. In retrospect, I would have not put things in terms of “choice” because I don’t think it’s really possible to just make up your mind to either care or not care about something. What I was trying to convey is that I don’t think there is a fact of the matter about who we, as individuals, are. There’s not a single answer to the question “Who am I?” out there, waiting to be discovered. Rather, there are many different rich, full answers to that question and not all of the answers require having genetic knowledge. So, it’s not about “educating” people, but rather creating a culture, a climate, where there is less pressure—from all avenues of life —to pursue what I call the “genetic route” to answering the question, “Who am I?”

Crucially, I think one of the ironies here is that insisting that genetic knowledge doesn’t matter at all or withholding information from people is not the way to create that climate. Quite the opposite: I think practices of secrecy and anonymity function to heighten the perceived significance of genetic ties. I think honesty and an openness to what the philosopher Alice MacLachlan calls the “abundant family”—a notion of family that extends beyond the typical notion parents and children—are more likely, over time, to put genetic knowledge in its proper place as a source of identity determination, but not an absolutely necessary source.

What about truth? How can wanting to know truth be dismissed as somehow unethical or immoral? How can truth be immoral? Couldn’t it reasonably be argued that trying to deprive someone of their birthright—of information most other humans have—is deceptive and unethical or immoral?

Let me tackle the second question first! I think it is indeed deceptive and, generally speaking, unethical to not tell a donor conceived person that they are donor conceived. What about not giving people access to genetic knowledge by, for example, using an anonymous donor? The central argument of the book is that that too is, in general, unethical (I wouldn’t call it deceptive, though, unless it’s paired with non-disclosure).

I’ve almost answered your second question, but not quite, because you put things in terms of people having a “birthright” to genetic knowledge and I didn’t use that term in my answer. I don’t use the language of “birthright” for two reasons. First, just as a philosophical matter, I’m not entirely sure what I think about natural rights in general, so my thinking just doesn’t tend to run in the direction of explanations that appeal to natural rights. But even if it did, I think it’s well worth asking what makes something a right in the first place. In other words, I’m not satisfied with saying, “Well, it is my right to have this information and there’s nothing more to be said.” I think rights call for explanations, so even if I did want to put things in terms of rights, I would still want to go on to do all the stuff I do to explain what gives rise to the right.

Your first question—about whether truth, or wanting the truth, can ever be immoral—is super interesting. I don’t think truth, as such, is either moral or immoral. It’s just the truth! Facts are neither moral nor immoral. But I think that wanting the truth can be immoral. Suppose I want to know some embarrassing fact about you so that I can blackmail you. My wanting the truth, in that case, would be immoral.

Now, wanting genetic knowledge is not at all like that. I’m just giving a case where it seems pretty clear that wanting the truth can be immoral. My point is just that if someone wants to defend the right to genetic knowledge, it’s probably not best to make that case by claiming that it is never wrong to want the truth. We need to know why people want the truth…and that returns us to some of what we discussed about interrogating the source of the desire for genetic knowledge.

Who benefits and how do they benefit by wanting to discourage the gaining of this information?

This is a great question, and it’s not one I take up in the book, at least not in detail. I think there are four broad communities that benefit from practices of anonymity. The first community is heteronormative parents who want to pass as a “traditional” family and don’t want anyone—least of all their child—to know that they have a donor conceived child. I think this interest is often born out of a sense of shame about being unable to conceive, combined with the kinds of worries you mentioned above (e.g. that a child who knows they are not genetically related to one of their parents will, as a result, love them less).

The second community is non-heteronormative families—gay and lesbian couples for example—whose status as parents has been, and to some extent still is, legally and socially tenuous. Living with the prospect that the donor might swoop in and claim parental rights—and that the law might side with the donor —is profoundly unsettling. A friend of mine describes it as living with a feeling of “terror,” and recent developments in the legal landscape in the United States—like the recently “Don’t Say Gay” law passed in Florida, the legal attacks across the country on reproductive rights, and the legal attacks in some states on trans people—show that that feeling is not remotely unfounded. I think those of us that have not lived with the prospect of having your family torn asunder—or your whole identity targeted—by the law can have trouble understanding the force of this concern. It’s understandable—to put it mildly—why, in that context, people might care that the donor is anonymous.

The third community, of course, is the fertility industry which has a massive interest in ensuring a supply of donors and avoiding limits on how many offspring can be conceived with the gametes of one donor.

The fourth are prospective donors who donate to make money and also to help people who cannot conceive, but do not want any involvement at all with their genetic offspring.

How much should we care about these interests? Let me start with the fertility industry. I am not an expert on the fertility industry (and, I’ll add, I have absolutely nothing to do with it), but I have little-to-no sympathy with their set of concerns. The same goes for prospective donors who want to be anonymous—I argue in the book if you’re going to donate, you shouldn’t be an anonymous donor. I can understand, of course, why a donor would want to be anonymous. But I argue that those interests really don’t count for much at all.

I am, however, sensitive to the interests and concerns of the first two groups I mentioned. Crucially, I don’t think such concerns win the day. In the book, I consider why prospective parents may prefer to use an anonymous donor and—while I understand where those preferences come from—I find them wanting when compared to a donor conceived person’s interest in having genetic knowledge.

I’ll also add that I think I think the best way to address the legitimate concerns of the first two communities is not by upholding practices of anonymity—which, as we all know, are increasingly impossible to uphold in the world of 23andMe etc.—but rather to transform the cultural norms and beliefs about the nature of families so that, for example, infertility is not a source of shame, the bionormative family is not seen as the “gold standard” (to borrow a phrase from Charlotte Witt) of family forms, and the law provides protections for non-traditional family forms.

You stop short in your book of weighing in on the right to know. Could you look at this and comment not as a philosopher but as a person with curiosity. Reverence for ancestors has been communicated since the beginning of time. Genealogy is the world’s leading hobby. People have always and will continue to want to know where they come from. If the vast majority of people in the world, now and apparently in all time and all cultures, were able to know who their parents are and that knowledge mattered to them, is it reasonable to think it isn’t a problem for those of us who are deprived of that information? Perhaps reduce it to an absurd point. Say, bread isn’t necessary for life, but if 95% of the people in the world want bread and are allowed to have it and you can’t have bread, wouldn’t you be upset, and might you not wonder why you are not entitled to have bread, even if it weren’t vital to your life? Why are all the philosophical arguments you construct necessary if, as the studies you cite suggest, the majority of donor conceived people feel that genetic information matters? Why is their lived experience not enough to demonstrate that, for whatever reason, they feel impoverished by not having the same genetic information others have?

I want to reject the dichotomy between looking at things as a philosopher and looking at them as a person with curiosity! For me, philosophy is all about being curious and trying to get to the heart of things. To be sure, I don’t think it is the only or the best way to be curious or to get at the heart of things: music, poetry, art, fiction, creative non-fiction, not to mention all the other academic fields of study, are also conduits for curiosity and thinking things through. Philosophy is just one way. But it’s a way that speaks to me. There’s not “Philosophy me” and “Here’s what I really think me.” It’s all just me!

So, when I consider your fantastic questions as a person with curiosity, I unavoidably take up a philosophical perspective. And when I do, it seems to me that it’s not enough to note that lots of people want something in order to conclude that they should have it or are entitled to it. Now: it’s definitely relevant. Indeed, my whole argument against anonymity is centered on the fact that the majority of donor conceived people want genetic knowledge. But—at the risk of sounding like a broken record—I think all desires, all wants, are candidates for critical scrutiny. We should scrutinize the forces that generate the wants, desires, interests, and aims that people have. Sometimes we’ll see that the forces are benign or even positive. Other times we’ll discover that they’re not positive. And still other times, we’ll discover that it’s a mix.

The point is just that we shouldn’t treat people’s desires, interests, or aims as beyond scrutiny and as the thing that settles the matter of what people should have or be entitled to. We need an account of what is behind the interests, desires, etc. I try to provide such an account when it comes to the desire for genetic knowledge—among the population at large, not just among donor conceived people. And I try to show that even if certain problematic cultural forces are in play, the desire for genetic knowledge is nonetheless worthwhile and should be respected. Anyway: that’s why I spill so much ink on this topic.Daniel Groll is an associate professor in the philosophy Department at Carleton College in Northfield, MN and an affiliate faculty member at the Center for Bioethics at the University of Minnesota. He writes on a variety of issues in ethics and is currently spending time thinking about the nature and significance of family resemblance. When he’s not doing philosophy, he’s probably making music for kids with Louis & Dan and the Invisible Band. Get a 30% discount on Conceiving People with the code AAFLYG. Find him on Twitter @dang_pigeon.

In 1995, when Peter J. Boni’s mother experienced a stroke after open heart surgery, the walls she’d built to hold back a secret for nearly half a century crumbled. In rehab, she began to tell visitors what she never told him—that his father wasn’t his father, that he’d been donor conceived. And so began a quest to learn the truth of his origins and the nature of the societal forces that led to the circumstances of his birth—the subject of his new book, Uprooted: Family Trauma, Unknown Origins and the Secretive History of Artificial Insemination.

Roughly halfway through his narrative Boni says, “Never doubt my resolve.” But his dogged determination is evident from the first page. Early on, it’s clear that after serving as a US Army Special Operations Team Leader in Vietnam, he was the go-to guy in his business sphere, where he was a successful high-tech CEO/entrepreneur/venture capitalist and more—and he tore into his personal mystery with the same can-do attitude—a tenacity that fueled him through the 22 years it took to solve the puzzle of his parentage.

Uprooted is comprised of four parts that add up to exceptional storytelling. It’s compelling memoir of a troubled childhood with an unwell father, a determination to succeed, and the challenges of grappling with the emotional fallout of his family’s secrets. It’s also an exhaustive and insightful account of the history of assisted reproductive technology; a cogent indictment of the flaws of the largely unregulated, multi-billion-dollar industry; and a rallying cry for advocacy with a prescription for change.

Boni’s scope is ambitious and he succeeds on every level. Donor conceived people will see themselves reflected in his moving testimony about the consequences and repercussions of the inconvenient truth of donor conception. Many will feel seen and heard as he describes genealogical bewilderment and the roiling emotions aroused by the revelation of family secrets, the shattering of comfortable notions of identity, and the lack of knowledge about his genetic information. It’s a must-read not only for donor conceived people but also for donors and recipient parents as well as fertility practitioners, lawmakers, behavioral health providers, and anyone contemplating creating a family through assisted reproduction. While the actors in a deeply flawed industry who are motivated solely by profit aren’t likely to be swayed by Boni’s arguments or embrace his suggested reforms, Uprooted may fuel a wildfire of advocacy that has the potential to give rise to meaningful legislation, transparency and accountability, and a true cultural shift.Let’s talk about language. With respect to people affected by misattributed parentage, I’m increasingly interested in the words we use about ourselves and our experiences and the words others use about us. You use the words bastard and illegitimate, mostly in the context of the history of donor conception and when discussing the societal and legal ramifications. What are your feelings about each of these words? Do you find them offensive or descriptive or neutral?

Yes, “illegitimate” and “bastard” are emotionally charged and offensive words by today’s standards, aren’t they! I wanted to share the emotional connotation of those words with the reader. I felt rather outraged by the label. To defend myself, I intellectualized it. In my research for my origins, I needed to understand the societal backdrop that fueled my parents’ decision to conceive me in such stealth via an anonymous sperm donor.

Those words were so descriptive of the then prevailing attitudes fostered by Church and State, which had evolved over centuries. A Time article, dated February 26, 1945 (near the time of my conception), amplified that backdrop. It had recapped a ruling in Superior Court on the legal status of a donor conceived child. In the eyes of the court, the wife had committed adultery, the husband was granted a divorce on those grounds, and the child was deemed “illegitimate.” The articled was titled “Artificial Bastards?” Yes, that was with a question mark. Those attitudes contributed to driving the donor insemination practice underground. My parents’ fertility practitioner coached them on how to make me look “legitimate.” They were instructed to take their closely held secret to the grave.

I used “Artificial Bastard” as the working title for my book during its early drafting (retitled Uprooted, with help from my publisher). No neutrality on my part. It was personal.

Early on and throughout much of the book, instead of referring to your biological father, you’ve referred to your “paternal seed.” I don’t believe you ever referred to your donor as your father, biological or otherwise. Why did you choose that word and what did that choice mean to you? And when speaking with your sister, you referred to “her father,” “her brother.” What went into the choice of words here?

For me, my dad may not have been biological, but I was fortunate; he wanted to be a dad and was terrific at it. He gave me absolutely no indication that he was anything other than my genetic father. Discovering 33 years after his death that our relationship wasn’t genetic actually magnified my reverence for him. It also rekindled my grief over his death. He’ll forever be my dad. Referring to my biological father as “the source of my seed” protected me from the emotional construct of the word “father” applied to an unknown person with whom I had no such loving relationship.

I discovered the source of my paternal biology thanks to a DNA test and the open embrace of my biological father’s natural daughter (AKA my half-sister). When she asked me “How should I refer to him, I mean, Dad?” I responded rather callously, but genuinely. “He’s your dad, not mine. It was never his intention to be my dad. He sold his sperm to enable someone else to be my dad.”

Her brother (my half sibling), gave me no such open embrace. Once again, to defend myself from the bonding word “brother” applied to someone who showed no interest in my existence, I found it less threatening and emotionally safer to refer to him dispassionately as “her brother.”

We sometimes use the word identity loosely–or maybe it’s more accurate to say that it means something different to different people. How do you define identity and how do you feel your identity changed after your mother’s revelation and again later when you discovered your sister and the facts of your origin?

Identity is complicated. Nature, nurture, or a combination of both?

I always credited who and what I had become (my identity) to three major experiences. First, a disruptive childhood enhanced my adaptability. Second, an education from a fine state college opened innumerable doors of opportunity for me. Third, on-the-ground service as a special operations infantry officer in Vietnam shaped my collaborative leadership style. Wait a minute! What about my DNA? I always took that for granted. My last name had its roots in Northern Italy.

“Genealogical bewilderment” was a term I studied in a college psychology class. It was applied to the adopted who had experienced developmental and belonging issues as they sought for missing pieces of their genealogy. Upon learning that I was “semi-adopted,” I poked myself. I was still the same person, but everything had changed for me. All the stories of family lore were a fabrication. My birth certificate was a hoax. If not Northern Italian, what was I? Who was I?

My dad suffered from debilitating bouts of depression. As a younger man, he could shake them off. As he aged, he could no longer do so. He took his own life when I was sixteen. Dad’s old-school Italian family treated his mental illness as a shameful flaw to be hidden, lest it spill over onto them. Suicide of a loved one creates a wound that never heals. I felt flawed, inadequate, vulnerable, abandoned, and alone. I feared that this gene might pass onto me or my offspring. I camouflaged those feelings with bravado and kept his suicide a closely guarded secret. I vowed to become accomplished, always strong, and invulnerable. Isn’t that what my future family would need from me?  Had I overcompensated and shaped my behavior based upon a willful lie?

How could I feel deceived and relieved, sad and joyous, shame and pride…all at the same time? The feelings sometimes came in waves, either soft and soothing or churning and crashing. My experiences and how I dealt with them were mine. But what were the origins of my athleticism, my stamina and endurance, my intellect, and my tenacious will? Why was leadership so important to me? My identity had been challenged by this revelation. Was I the victim of identity fraud? Worse yet, was I a fraud?

My fervent need to know my genetic origins, health history and whether or not I had any siblings poured high octane gasoline on this blaze to fuel my relentless research…for 22 years…until I discovered my answers. During that process, with the help of some therapy, I bonded with the cartoon character Popeye. I still quote him often. “I yam what I yam”—no more flawed than anyone else!

Equipped with a healthier sense of myself, I finally uncovered my paternal genealogy (the source of my seed), a giving sister, and my genetic health history, all of which I could share with my children. With my persona intact, I better understood the origin of some of my characteristics, physical and otherwise. I wasn’t looking to create a new family. I had a loving one. But this unveiling was such a home run for me! I’m an only child with a couple of siblings I adore. We have a terrific friendship based upon unusual circumstance. Mission accomplished! I feel whole and complete. I am donor conceived, and I know my truth.

I find it interesting that we say “I am donor conceived” or “I’m an NPE” as opposed to I was donor conceived or I was an NPE, as if being donor conceived or an NPE isn’t something that happened to us but something we are. What are your thoughts?

I was born on December 12th. In astrological terms, that makes me a Sagittarius. It isn’t that I once was a Sagittarius. I am a Sagittarius. It isn’t that I was an NPE, misattributed, donor-conceived. I am. I will be donorconceived for the rest of my life. It can’t be changed. That truth has not defined me, but it does add to my identity.

Several times you used the word logical—as in “I was a logical Guidaboni.” I don’t recall seeing that before. Can you explain why you used that word and what it means to you?

My Italian cousin Eddie deserves the creative footnote for “logical.” He was the first of my paternal relatives with whom I shared my newly discovered donor conception. Since our relationship was no longer biological, Eddie coined me his “logical” cousin; a “logical” Italian. Doing so acknowledged our mutual feeling that blood alone does not define family. We were both keenly aware that we shared common experiences, common family stories of victory, rebounding from defeat, values and traditions, common foods, a common enemy at times (the elders when we misbehaved), and a common definition of hospitality—all part of our common upbringing.

Eddie is thrilled for me that I found my truth. It is only logical that our mutual feelings of family bond have intensified since my initial revelation and final discovery.

You used the word loneliness at one point to describe the feeling of having discovered this enormous secret in your life. Can you describe how the experience produces loneliness?

Allow me to give you a frame of reference for that feeling of loneliness.

As a small unit infantry commander in a combat zone, I led a competent team of people through the fear, stress, chaos, and confusion of hostile enemy fire. At times, I made life and death decisions in an instant, without complete pieces of information. I used those skills in my business career as a CEO in order to right organizations that had run aground. Leadership is a lonely place. There are competing opinions and interests all vying for attention. Only you hold the ultimate accountability. In war, the cost of accomplishing a mission can be as high as life or death. In business, the ultimate cost is measured in money, but it includes organizational longevity and career security, which can impact many thousands of people. These were unique experiences, from a unique perspective, shared by very few. My fellow infantry officers and fellow CEOs provided me with a sharing support group of sorts to help process those unique experiences and learn from the experiences of other people who have walked that walk. Collective wisdom is a powerful thing.

Upon this donor conception discovery, I felt genuinely alone. Who could relate? As I shared my confusing feelings with a closed circle of friends and family, their well-intending platitudes only enhanced my feelings of isolation. (“You at least know that you were loved and wanted” or “You are still the same person.”) Sure, I had empathetic friends and family and a fine trauma therapist. But throughout my entire 22 years of searching, I longed to meet and speak with other donor conceived people who shared my emotions from their own unique experiences to help me process and validate these confusing feelings. They were likely few and far between. Who were they? Where were they? Did they even know that they were donor conceived? I was surrounded by the love of so many, but I longed for company.

Moving away from language, but related to that last question, you write about having discovered the group We Are Donor Conceived. Can you talk about how important that discovery was and how it helped you not feel alone?

I received loving empathy and support from helpful friends and family. I had engaged an able therapist. They were able to “talk the talk,” but they had never “walked the walk.”  No handbook was readily available on how to walk that donor conceived walk. The internet and twenty-first century technology came to my rescue.

I googled “donor conceived and misattributed people.” Up popped We Are Donor Conceived, a private Facebook group that had only been in existence since 2016. It was comprised of several thousand donor conceived people from around the globe who had experienced the impact of misattribution and genealogical bewilderment from the surreptitious practice of artificial insemination by donor.

Everyone had their own unique story. Some had learned by the surprising results of their recreationally taken DNA test. Like me, they had experienced a range of emotions—sometimes simultaneously: anger, relief, violation, deceit, curiosity, shock, shame, isolation numbness, pride, grief, confusion, embarrassment, emptiness, sadness, joy, fulfillment, indifference, or a combination of high and low feelings that changed over time with more knowledge. Members of the group shared how they had discovered, processed, and benefitted (or not) from what they had discovered.

I was no longer alone. I had a nonjudgmental community with whom to share feelings, tactics, and strategy. This community had walked the walk. The power of collective wisdom from uniquely experienced people has been priceless.

You mentioned therapy quite a bit—how important was therapy to you in navigating your discovery and in your search for your roots?

This whole identity disruption I found traumatizing. The social context in which I had grown up and spent my adulthood (in both the war room and the board room) reinforced the attitude that weak and needy people were inadequate and unsuitable for command. Only the weak needed therapy.

In my case, this genetic identity trauma triggered flashbacks of a dysfunctional childhood, three decades of grief for my dead dad that I never allowed myself to fully experience, and the PTSD of war. It was difficult for me to admit. I was a CEO who needed some professional help to navigate the volcanic fallout from my changing genetic landscape. I did so discreetly.

My therapist was deadpan serious when he said, “You hit a trifecta. Newly experienced trauma often resurges others long past.” To effectively deal with my identity disruption, I had to deal with all three issues. I never worked so hard in all my life. In the process of searching for my roots, I had discovered myself.

At one point you wrote, “My persona had become softer, yet I had grown stronger, both personally and professionally, as a result of my intense, identity-challenging ten years from 1995 to 2005.” Can you say more about what you meant by that?

Therapy hammered into me that “flawed” is a human condition. It is okay to be blemished. Everyone has baggage. My therapy constructed a better handle for me to carry it. My unresolved baggage from childhood and war ruled my behavior. Never vulnerable, always strong; make tough, logical decisions without letting my feelings get in the way. That personality profile worked for me in the jungle as a Special Operations Team Leader and certainly in my chosen career. It was not working in my adult home.

My wife and I were in the midst of a marital crisis at the outset of my trifecta. We had issues. I had learned to deny my feelings and fears. To top it off, she found that the privacy with which I carried my feelings, my invulnerable air, had robbed her of an intimacy with me that she craved. For her, our relationship had not grown. It was shallow and incomplete. The leftover anger from a traumatic, life-altering Vietnam combat experience wore thin, too.

Gaining this deeper understanding of where I came from and who I am went a long way in helping to heal my marriage. I had learned to reveal more of myself to my inner circle and to connect more intimately with my wife and others close to me.

As a CEO for companies facing difficulty, I always thought I had provided the right kind of collaborative leadership. People followed me to take the hill. But I found that by adding an air of intimacy and revealing more of myself, the quality of my leadership increased markedly, as measured by the high caliber and low turnover of the teams that I built and the size of the hills my teams were able to conquer. No hill for us climbers!

Popeye might have said “I yam what I yam.” Perfect? No! But I was able to add, “I yam better than I yam.”

What most surprised you during your research into the field of assisted reproduction?

A whole host of discoveries surprised me as I researched the scandalous history and evolution of assisted reproductive technology, but two things stand out.

First, the unregulated practice of assisted reproductive technology has enabled dozens, even hundreds, of siblings, all unknown to one another, to be conceived from the same gamete donor, with no requirements for testing or registry and with no laws to combat what we term “fertility fraud.” A friend of mine who used to breed Rottweilers said it best. “The breeding of puppies enjoys greater legislative oversight.”

Second, a staggering number of us are misattributed, for whatever the circumstances. That is compounded by the generational impact. The experts estimate that 2% to 4% of us are misattributed; our DNA and our birth certificates don’t jive. While some make a calculated case that this number is a bit less, others make a cogent case that it is actually much higher. Either way, I find that number unfathomable. For instance, in my high school graduating class of 100, using that 2% to 4% estimate, two to four of my classmates are misattributed. I’m one of them. I have helped two other classmates interpret their DNA test results to the same conclusion. In a typical family tree, we have two parents, four grandparents, eight great grandparents, and so forth. When applied a few generations out, in geometric fashion, all 100 of my classmates are misattributed to (at least) one of their third to sixth great grandparents. There are over 50 million people in DNA databases today. How many have experienced their own identity trauma with an accidental discovery? How many more have yet to discover that something doesn’t jive? There remains much more trauma yet to come.

There’s been some criticism of those of us who believe both that genetic inheritance matters and that we have a right to know our genetic identity, and that this emphasis on genetic information promotes the primacy/superiority of genetic family at the expense of nontraditional families? How would you respond to such criticism?

The right to know one’s genetics and the bonds of family, traditional or nontraditional, are not mutually exclusive. For instance, I can love my dad, not biological, and want, even need, to understand my genetics all at the same time. My “logical” cousin, Eddie, would agree.

As you know, many aren’t able to put all the pieces together as you did or haven’t found welcoming family. It may be hard to imagine, but how do you think your life might be different now had you not put together the pieces, had you not figured out the source of the seed, had you not been embraced by new family?

To put my answer to this question in context, I ran PSYOP missions in Vietnam. At times, we conducted Operation Wandering Soul. It exploited the superstition that the dead must be put to rest in their ancestral burial ground or their spirit would be doomed to wander forever.

I have reaped the benefits of therapy to better carry my baggage. I never aspired to develop a new family. My new sibling relationships are a bonus. In the absence of my final discovery, however, I expect I’d remain emotionally healthy, but the fire of genealogical bewilderment would endlessly rage within me. I imagined that I would be that agonizingly Wandering Soul, never at rest.

How did the experience of writing this book change you, if at all?

Before writing this book, I considered myself a retired venture capitalist, former high-tech CEO, combat veteran, non-profit leader, recreational sailor, and fun-loving grandfather. I still am. But this experience awoke my inner Don Quixote.

Mark Twain once said “The two most important days of your life are the day you are born and the day you find out why.”

Today, I am an author and an activist for the rights of the donor conceived.PETER J. BONI credits his disruptive childhood, a state college education from UMass Amherst, decorated on-the-ground service as a US Army Special Operations Team Leader in Vietnam (coined his “Rice Paddy MBA”), plus luck-of-the-draw DNA with making him the person he is today. Out of his accomplished business career (high-tech CEO, venture capitalist, board chairman, non-profit leader, award-winning entrepreneur, senior advisor) grew his first book, All Hands on Deck: Navigating Your Team Through Crises, Getting Your Organization Unstuck, and Emerging Victorious. The father of two and grandfather of three, he lives on Cape Cod, Massachusetts. Find him on the web, on Twitter @PeterJBoni1, and on Instagram @peterjboni.

By Laura McMillian, PhD, CPC, ACCAs a professional coach* working with donor conceived adults, parents, and donors, I’ve observed a common issue among many donor conceived clients seeking support: feelings of anger or disappointment that their parents kept the truth of their conception secret from them for so many years. Because there may be disruption in the relationship between these adults and their parents, one or both parties seek coaching to help them work out their differences and adjust to the newly challenging reality. My donor conceived clients of all ages typically discover the truth of their conception either from their parents or from having taken a DNA test. Less commonly, they find out from a person other than a parent.

Donor conceived people are often confused as to why their parents didn’t think such information was vital enough to share with them much earlier on. Indeed, many feel that knowing the identity of both biological parents is a basic human right for multiple reasons (psychological, cultural, and medical); they therefore feel violated and betrayed by their own parents for denying them this right to their complete family heritage—information that most others take for granted.

Donor conceived people sometimes point out their parents’ hypocrisy in having chosen gamete donation over adoption for the purpose of establishing a biological connection to at least one parent and later complaining when their adult child shows interest in the typically anonymous biological parent. Should biological relatedness only matter to parents but not to children? The parents may say things like, “It shouldn’t matter. Love is all you need, and you received that.” Yes, but we also need to make sense of our traits and know where we came from so we can form healthy adult identities, not to mention our need for an accurate family medical history. Equally hypocritical, some parents enjoy doing genealogical work on their own family trees but criticize their adult donor conceived children for also valuing and investigating their true and complete heritage.

Parents’ explanations for their failure to disclose the manner of their children’s conception are often confusing. For example, they may say, “We couldn’t find the right time,” or “We thought it would be better for you not to know.” They may state that they didn’t want to layer on additional challenges when their children were going through difficult life events, such as going to college, or when there was trauma, loss, or divorce in the family. These justifications may or may not be excuses to avoid the difficult “telling conversation.” Sometimes, donor conceived people recognize their parents’ good intentions, but the problematic secret, which they consider a major lie, may overshadow those good intentions. Many feel there were numerous opportunities over the years for their parents to tell the truth.

There are several psychological reasons why parents may keep such secrets. Recipients of donor sperm may experience denial, as some may have lied to themselves for years by believing that the donor sperm didn’t “take,” while theirs (or their partners’) did. (Egg donation doesn’t afford the same opportunity for denial, since in vitro fertilization is necessary.) And in the past, fertility professionals encouraged such denial by mixing the sperm of two men—donor and intended father—or by telling heterosexual couples to have sex the night of the artificial insemination. Even today, most fertility professionals aren’t well informed about secrecy’s negative effects on donor conceived people and their family lives, being only concerned with running their businesses and achieving results.

In addition, the parents may not have done their own research, also having focused solely on the desired result, or there may not have been research available when they conceived. If the donation occurred decades ago, there likely was no publicly available source of information or research studies, let alone the Internet. Other possible reasons parents may have desired secrecy include shame over male infertility and a culture of sweeping family secrets under the rug.

Yet another psychological reason for secret-keeping is the deep-seated fear that children might not love the non-biological parent as much if they knew the truth. Sadly, this understanding is backwards; a relationship characterized by honesty and respect is stronger than one characterized by secrets and lies, regardless of biological relatedness. Children don’t know what DNA is; all they know is how parental figures treat and care for them. Nothing erases those early relationship experiences. At the same time, nothing erases the biological connection to genetic relatives, but this fact doesn’t detract from the connection with those who raised them. If the donor conceived person wants a relationship with the biological parent, the parents who raised them would do well to remember that love is not a finite resource.

Relationships that weren’t strong before the “telling conversation” tend to encounter more challenges than do those that had been strong from the start. The relationship is inevitably tested, and if there are dysfunctional patterns already present, some relationships might not survive this major test. Resolving both the dysfunction and the discovery process may prove too difficult all at once, especially without significant professional help over several years. Relationships that were already strong may experience bumps along the road but eventually return to where they were before (or close to it)—a process that often takes a year or two.

I usually recommend to my donor conceived clients that they continue civil discussions with their parents, if possible, to learn the reasoning used during their reproductive decision-making. I also advise them to exercise as much empathy as possible. Empathy is not the same as sympathy; it means putting yourself in someone else’s shoes in order to better understand their experiences and actions. The parents of donor conceived people who didn’t tell the truth early in life believed they were doing the right thing at the time. Many of my recipient parent clients express regret and remorse after learning more about the subject, though some remain steadfast in their defensiveness. Donor conceived people tend to find defensive parents particularly infuriating and invalidating; this defensiveness can create a schism in the relationship and add to the psychological burden of learning that one is donor conceived. Some parents even flip flop between supporting and denying the importance of their adult children’s full genetic self-knowledge.

As the parents’ coach, I try to ease any feelings of parental inadequacy and affirm the positives of their efforts. They are then better able to humbly and honestly face their adult children and move forward collaboratively. This is a time when donor conceived people need all the support they can get. Any challenges experienced by the parents in this process don’t compare to those of the adult donor conceived people, whose very existential foundation has been shaken. The shock and difficulties won’t magically disappear, although the intensity may lessen, since these effects may reverberate for the rest of their lives.

Those parents who value the relationship with their adult children more than their own egos are more likely to listen and offer support in whatever way they can. (Loving reassurances may be necessary before this becomes possible.) They will be receptive to general information about the experience of having been donor conceived as well as to their adult child’s specific experiences, similarly cultivating empathy. They also learn to support and not take personally their adult children’s curiosity about the other half of their genetic identity and the family history attached to it since this is a healthy curiosity that mustn’t be squelched. In this manner, parent-child relationships may become strong again in less time than they otherwise would.

If parents end up feeling less significant through their adult children’s focus on the mysterious or newfound biological parent, they might benefit from remembering the importance of being a “rock” to them through it all. The biological parent and family may or may not be receptive to contact or a relationship, but the parents who raised the children are able to provide consistent love and support regardless of what happens. And that’s not insignificant at all.

Such a strong relationship can go a long way toward easing the coping process. I recommend that my clients ask their parents for the types of support they need (assuming their parents are receptive), since many parents may have no idea how to help relieve the shock, confusion, and/or pain (if applicable) of the discovery and adjustment process. Bringing parents into coaching sessions can be helpful because an outside perspective can be less threatening to them. Finally, donor conceived people can join Facebook groups devoted to them as a population to help mitigate feelings of aloneness through gaining a sense of shared experience with others in similar positions.Laura McMillian, PhD, CPC, ACC, has a master’s degree in clinical psychology with an emphasis in marriage and family therapy. She’s also a certified professional coach who provides services to donor conceived individuals, donors, and parents. She lives in Hideout, Utah with her loving spouse Kevin and their 3 small dogs. Learn more about her practice here.Editor’s note: While professional coaches may help facilitate communication and share practical coping strategies, they do not treat psychological disorders unless they are also licensed therapists. Individuals experiencing shock, trauma, or significant emotional challenges should seek the care of a qualified therapist, preferably one trained in issues related to genetic identity. BEFORE YOU GO…

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By Kara Rubinstein DeyerinThe advent of over-the-counter DNA testing has unlocked the closet where many family secrets were kept. While many learn one (or both) of the parents who raised them are not their genetic parent from a DNA test, sometimes people find out in other ways. A mother with a 104-degree temperature might let it slip that she had a son as a teenager. A family friend may tell someone mourning his dad, possibly at his funeral, that the suffered from infertility and had used a sperm donor. And sometimes having a child of their own prompts individuals to search for their biological family because they grew up with a vague idea of who their fathers were. Regardless of how one learns about misattributed parentage, the process of coping with such an experience is daunting and life-changing.

Right to Know is a non-profit founded on the principle that it’s a fundamental human right to know one’s genetic identity. We believe in inclusivity and embrace anyone who facing misattributed parentage. To that end we use the term misattributed parentage experience (MPE) to describe the phenomenon of coping with the fact that you did not grow up knowing your genetic parent. It’s a term used by mental health professionals for decades. We believe the word experience best describes the long-term effects we all have, as opposed to “event,” which is a one-time occurrence. The ramifications of an MPE last a lifetime to some degree.

An MPE belongs to one of three primary communities:

• Non-paternity event (NPE): those conceived from an extramarital affair, tryst, rape or assault, or other circumstance
• Assisted conception: those conceived from donor conception (DC), sperm donation, egg donation, embryo donation, or surrogacy; and
• Adoption: those whose adoption was hidden, orphans, individuals who’ve been in foster care or are who are late discovery adoptees (LDA), etc.

United, our communities have a stronger voice to effect change in society—to promote laws to protect our rights and encourage a better understanding of our experiences.

Right to Know focuses on three pillars to support people with an MPE: education, mental health, and legislation. Adoptees are trailblazers in many of these topics, but there’s still much work to be done. Many people with an MPE feel powerless, and through our work, we hope to empower them. Advocacy and helping others often facilitates healing.

People with an MPE often are not represented in lawmaking in the U.S. In fact, some of us clearly have no rights in the eyes of the law. Right to Know advocates for changes in laws to ensure people with MPEs are represented and our fundamental right to know our genetic identity is established legally. Our legal advocacy starts with your participation at a grassroots level. We are working to pass broad-based fertility fraud legislation with criminal penalties for all types of fertility fraud along with a civil cause of action allowing for both parents and offspring to bring a lawsuit. We also encourage an additional criminal penalty and a loss of licensure for doctors who use their own sperm to inseminate patients. We’ve teamed with legislators in Iowa, Michigan, New York, Oregon, and Washington to pass such legislation, with Nevada and Georgia soon to follow. We also partner with adoptee rights groups to see how we can help enact laws to ensure access to original birth certificates.

As part of RTK’s mental health initiative, we hold a monthly Community & Connection event on the first Sunday of the month at noon pacific time with a licensed therapist to discussed issues pertinent to MPEs. Past topics have included “A Look at Loss and Grief in MPEs,” “The Importance of Finding your Tribe and Feeling Supported,” and “Reaching Out to Bio-Family and Coping with the Response.” The next Community & Connection is “Identity and MPEs,” with Jodi Klugman-Rabb on Sunday, July 11. To register, send an email to RSVP@RightToKnow.us.

RTK also operates a hotline number, 323-TALK-MPE, to help people find resources to process their MPEs and pair them with someone who’s had a similar experience. To facilitate access to licensed professionals who have experience working with people with an MPE, we provide a directory so you can find a therapist to help you. We also work closely with DNAngels to help people find their genetic family.

Each month, usually on the third Sunday at noon Pacific time, RTK sponsors a webinar with world-class speakers on a topic related to MPEs. Past topics have included “Interacting with Narcissistic Moms” and “Family Members’ or Societal Perceptions of Ancestral DNA, Race, & Identity.” Find Information about upcoming webinars on the website.

RTK strives to educate the public on the complex intersection of genetic information, identity, and family dynamics through various media projects. In the fall it is launching an MPE Education website that will offer a variety of classes related to misattributed parentage.

Due to the newness of DNA testing and the surprising consequence of discovering misattributed parentage this way, there’s very little data available about MPEs, the rate of occurrence, demographics, and what we need to heal. Right to Know is excited to partner with Anita Foeman, PhD, and Bessie Lawton, PhD, from the DNA Discussion Project to gather information on MPEs through an online Institutional Review Board (IRB)-approved survey that aims to understand how MPEs affect individuals,  their family relationships (both preexisting and new), and their health and determine whether sufficient recourses and access to resources exist to cope with such a discovery. Your voice matters. Please participate in this groundbreaking research to ensure people with MPEs receive the help they need in the future. If you’d like to help or need more information about Right to Know’s initiatives, send an email to info@RightToKnow.us or find us online. Find us as well on Twitter and Instagram @righttoknowus.Deyerin is a non-practicing attorney and co-founder of Right to Know. She discovered three years ago that the man named on her birth certificate was not her biological father. With the click of a mouse, she went from being half black to half Jewish. She’s a mom, wife, writer, cook, knitter, and connoisseur of all things human. Follow her blog about her own journey, Unexpectedly Jewish. BEFORE YOU GO…

Look on our home page for more articles and essays about NPEs, adoptees, and genetic genealogy.

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It’s not news to donor conceived individuals that they have feelings about the manner in which they were conceived—feelings that may never occur to, or be acknowledged by, others. According to a new study published in the Harvard Medical School Journal of Bioethics and discussed in a recent article in Psychology Today, not only do individuals experience significant distress upon learning they were donor conceived, but they also think about the means of their conception often.

The authors of the new study reviewed existing literature and recognized a dearth of research concerning how donor conceived people feel about learning of their status, about the ethics of assisted reproduction, how their sense of identity is affected, how they’ve coped, and more. Rennie Burke, Yvette Ollada Lavery, Gali Katznelson, Joshua North, and J. Wesley Boyd developed a survey about these issues and asked Dani Shapiro—who wrote about her own donor conception discovery in Inheritance: A Memoir of Genealogy, Paternity, and Love—to help them recruit respondents. The response rate was 96.6%, with 143 demographically diverse respondents, most from the United States, the majority of whom were conceived through anonymous sperm donation.

Among the findings:

• 86.5% believed they were entitled to non-identifying information about their donors
• 84.6% experienced a “shift in their ‘sense of self’” after learning they were donor conceived
• 48.5% sought psychological support
• 74.8% wished they knew more about their ethnicity
• 63.6% wanted to know more about their biological parents’ identities”

Highlights of the researchers’ conclusions are that increased attention to counseling is important, anonymous donation should be discouraged, donor medical history should be provided to offspring, and the full potential implications of DNA testing should be considered before individuals proceed.

J. Wesley Boyd, MD, PhD, shared his thoughts about the research.

What instigated the undertaking of this study? What inspired it and what was your goal?

For the last six years I taught a course in the master’s degree program in Bioethics at Harvard Medical School called Contemporary Books in Bioethics. The course was amazing because we had authors come and present a public lecture about their books and also speak just to the class members, who’d already read and discussed the books prior to the authors’ arrival. Two years ago, one of the books that we read was Inheritance by Dani Shapiro. Three pages into my first reading of that book and I was rapt. It might be the only book I’ve read cover to cover in a single sitting—I couldn’t put it down. I’d never given much thought at all to the issues in that book—and the whole topic of gamete donation—prior to reading Inheritance. Needless to say, it was great meeting Dani when she came to talk about her book. In the middle of her class presentation I asked her if there were large-scale studies about how donor conceived individuals felt about the nature of their conception and she said no. Right then and there in class I said, “Then I’m going to conduct a study” and I asked if any students wanted to participate and several raised their hands.

Could you summarize the most significant finding of the research?    

When individuals discover later in life that they were conceived through donor technologies it can be earth shattering. Many of the folks we surveyed were dismayed and had their sense of self turned on its head. Additionally, many of our respondents thought about the nature of their conception every single day—a finding that is astounding given that most of us never give our conception much thought if any. Many ended up seeking psychological counseling as a result of their altered sense of self. Also, many were troubled to learn that money had been exchanged surrounding their conception.

The study states that there’s been little consideration to whether donor conceived people “have suffered psychologically because of the discovery of their conception.” Was there a distinction drawn between suffering because of the discovery of their conception and suffering because of the fact of their conception? In other words, were individuals sorry to have learned about their status or troubled by the reality of having been donor conceived and having been unaware of it?

My impression of our results is that folks were troubled at not knowing about the nature of their conception and about the deception therein. It’s one thing to know early in life about the nature of your conception and incorporate that into your sense of self throughout your life and quite another to discover later in life that so many things that have been the bedrock of your psyche and stability are not what you thought. The former is quite likely just part of growing up, but the latter can upend any sense of stability and grounding for a person. In the latter scenario, foundational parts of yourself can be ripped away and you can end up wondering who you really are and also feeling like your previous life was a lie in many respects.

Previous studies suggested that failure to disclose to offspring their donor-conceived status was no more likely than disclosure to cause harm. Can you discuss how your study compared in that regard? 

If our findings diverge from any previous findings, I assume that is because of the ways in which we solicited research subjects. Our participants were often members of support groups (such as on Facebook) of donor conceived individuals who might have joined those groups precisely because they were struggling with their discovery about the method of their conception. As such, our participants almost certainly differ from individuals who were informed early in their lives about the nature of their conception and had been able to assimilate and process that information into their sense of self over a period of decades. Additionally, if there are people who discover later in life that they were donor conceived and did not have much of a problem with that discovery, they might not feel compelled to join support groups, so would not have been among those we sampled.

What if anything surprised you about the findings? 

I was not surprised by much, believe it or not. Perhaps the reason I wasn’t surprised by what we discovered is that I’d already read Inheritance and therefore had already grappled with the plethora of thoughts and emotions individuals might have upon discovering they are donor conceived.

The study states: “We believe that it is impossible to know where technology will be in another 50 years and, as such, believe that there cannot be truly informed consent today for anyone involved, either the gamete donors or potential parents who utilize these reproductive technologies.” Of course, who knows what may come, but do you have any thoughts about what issues might arise?  

I am no expert in genetics, but I mostly only have a vague sense about the nefarious ways in which genetic technologies might be used to make predictions about future potential for any single individual which might result in blocking pathways for those deemed unfit based on their DNA (not unlike what we see in the movie “Gattaca”). I could imagine things like cloning and creating more than one being from a single genome and having various identical beings committing nefarious acts, wreaking havoc and chaos. Also there might be certain genetic traits and dispositions that will be able to be amplified and magnified—a taste for power, sadism, or who knows what—beyond anyone’s ability to reign it in, creating evil on a scale that we can’t really imagine. Also, many individuals might be deemed unfit to be biological parents due to their genetic makeup.

The study concludes that great thought ought to go into the decision about whether to take a DNA test. Can you talk about the considerations and how individuals can be helped to make that decision? 

If someone tests their own DNA, in my opinion they ought to assume that their genome will end up in a database that is fully, completely discoverable. This availability will not only make you readily available to biological relatives, but to insurance companies, intelligence agencies, and police forces, to name just a few. I assume entities like NSA and the CIA are already looking at our genome in hopes of making predictions about predilection toward crime, espionage, etc.

The study also calls for testing companies to promote greater awareness about the potential harms of DNA testing. In what way would you like to see that awareness expressed? 

The ways I’d like to see it expressed are contrary to their profit motive, so I don’t expect much change in their marketing, but instead of the ads we currently see with people happily making discoveries about their ancestry, I’d like to see overt depiction of individuals who are shocked by what they find when they test their DNA.

Based on your study findings, what advice, if any, would you have for individuals who have learned that they were donor-conceived in order to help them better cope? 

I’d offer advice similar to that which I offer anyone who is suffering or in pain. I’d encourage them to seek whatever kind of support or counseling they might need to process their discovery—whether informal or professional—and to let them know that they are not alone. I think that latter point is why support groups can be so beneficial.

What are the greatest needs for future research, and what further research, if any, do you plan to carry out? 

My colleagues in medical ethics at Baylor College of Medicine are planning to conduct a larger, grant-funded study of folks who have done at home genetic testing and discovered that they are not biologically related to (some of) their first-degree relatives. Given their proposed sampling method, if it goes forward their study will be much larger and more generalizable.

What, if anything, stands in the way of research or makes research of this kind challenging? 

This research is challenging because many folks who find out late in life that they were conceived through donor technologies are hurting and their sense of self has been turned on its head. Given the levels of pain and suffering so many people have experienced, you have to tread very lightly in order to not exacerbate their pain in any way.J. Wesley Boyd, MD, PhD, is a professor of psychiatry and medical ethics at Baylor College of Medicine. He is also a faculty member in the Harvard Medical School Center for Bioethics. He obtained an MA in philosophy and a PhD in religion and culture, along with his medical degree, at UNC Chapel Hill. He’s taught extensively in the humanities, bioethics, human rights, and psychiatry. His areas of interest include social justice, access to care, human rights, asylum and immigration, humanistic aspects of medicine, physician health and well-being, the pharmaceutical industry, mass incarceration, and substance use. Visit his website at jwesleyboyd.com and follow on Twitter @JWesleyBoydMD @BCMEthics @HMSBioethics. BEFORE YOU GO…

Look on our home page for more articles and essays about NPEs, adoptees, and genetic genealogy.

• Please leave a comment below and share your thoughts.
• Let us know what you want to see in Severance. Send a message to bkjax@icloud.com.
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By Sarah Blythe ShapiroWhenever I tell this story, there’s always the same reaction: “I don’t know what to say.” And who am I to blame them? How could they? I wouldn’t either.

Sometimes, I still don’t.

I’ve always known. From my earliest waking memories, I knew I was special; I knew that he was special too. Because he was a donor, and I was a donor child, in our unusualness I had a bond with this mystery man. But I didn’t know who he was, and he didn’t know I existed.

When you’re a donor child with a single mother by choice, something can happen. There’s a certain void. An abyss. Not a crater, because that would imply something was once there. You feel empty. You feel lonely. You didn’t have a choice. In this situation, everybody but you had a choice.

Let’s backtrack. It’s April 2018, and I’m lying on my stomach, stretched out on the stone-cold floor of St. Luke’s Episcopal Church, on a retreat. Only three months until my 18th birthday. We were told to take some time to write and meditate. I’d been meaning to write this letter. Now I finally have time to do it. “Dear Dad.” No, that’s not right. Wait, yes it is! “I love you!” “Please love me!” “Please…want me.” Want me, goddammit.

I never sent the letter. My 18th birthday arrived. Finally. I reached out to California Cryobank. The deal is that you get three tries to reach out; if the donor never responds, you aren’t allowed to facilitate contact ever again. And the donor has a right to his anonymity. Anonymous until 18. But he still has a right to turn you down when you turn 18. Such a bright age, 18. Shiny, almost. Full of promise and potential. Hope for the future.

I never heard back, so I figured he hadn’t received my letter or wasn’t interested, and I went off to college, determined to immerse myself and desperately trying to flee from heartbreak. And I didn’t hear back from him. Not then. But I did hear from someone just as interesting.

A half sibling. And then another half sibling. And another. And another. Every week, a new sibling posted in California Cryobank’s Donor Sibling Registry, and I reached out to them. Since I was raised an only child, to suddenly become one of 10 is mind-boggling, to say the least.

But this story is about Caveh. Caveh and Sarah. Father and daughter. He might not agree with that terminology, but after all, he is my father. No, he didn’t raise me, but everyone has two genetic parents, and he’s one of mine.

In late September 2018, I got the call. A third-party mediator informed me that he was interested in contact. For several months we went back and forth over email as Sarah and “C.” All I knew was that he was a married filmmaker with two young children and had never been contacted by donor offspring before. He wanted to maintain anonymity in case I was nuts, which was both understandable and frustrating because I know I’m not nuts. I half-expected a “welcome home” greeting and a general eagerness to know me. I kept thinking that if I was in his shoes, I would be amazed and excited to know that I had helped to produce this young adult. But he was nothing of the sort. Caveh was very uncomfortable with communication for several months and hurt my feelings by continuously distancing himself from me. He acted as if this was an organ or blood donation and not a sperm donation. As if he hadn’t realized that sperm creates children who become adults with their own minds and experiences.

But I still wanted to know him.

In all honesty, I figured out who he was before he told me. After being tipped off that he worked at a school in the Tri-State area, I naturally looked up all 96 New York City universities and colleges. Hunched over my laptop on the floor of my dorm at 3 AM and about halfway through the list, I finally found him. After confirming the ethnicity of his surname, I just knew. That’s my dad. That whole night was a blur, but I do remember calling my mother, intermittently crying and laughing hysterically.

Some of you may find this an overreaction. To you, I say: you cannot know how it feels unless you experience it yourself. If there’s one word I can use to describe my Nancy Drew-like discovery, it’s “relief.” Even though he wasn’t the person I had hoped he was, the bolded, italicized question mark of my life—Who the hell is he?—was answered with a resounding exclamation point. He’s a famous filmmaker!

A little background on Caveh: born in Washington D.C. in April 1960, Caveh Zahedi is an Iranian-American avant-garde filmmaker who prides himself on his commitment to truth, whatever it takes. In his case, truth resulted in the end of his third marriage with his compulsive need to film literally everything. But Caveh is passionate about his work and is nothing if not a risk-taker. There are a lot of people out there who love his stuff. Man, is it weird having a famous dad.

After he finally revealed his identity to me, we first met in September 2019 in Chicago at a film screening. He flew there from NYC (my birthplace, by the way) and I took an 8-hour Megabus from St. Olaf College to meet him. We had agreed that our first encounter should be filmed, to be made into a documentary. Caveh apparently has a database full of fans hoping to get the call that he needs them for his films in some capacity. So when he asked, three eager crew people showed up with equipment—working for free—and completely unaware of what they were about to film. They just hoped it would be interesting.

They weren’t disappointed.

The whole night felt surreal. We filmed for three hours; hell, we even had a drone follow us in a park as we walked side by side, “bonding.” It was pretty awkward trying to fill the time and keep up a dialogue. But I won’t talk much about that. You can see the film for yourself when it comes out. Just look for “I Was A Sperm Donor.”

The most memorable parts of the night for me happened off-camera. After our filming session, we retreated to another filmmaker’s apartment to watch the first two seasons of “The Show About The Show.” At one point in the show, Caveh recounts the filming process in “I Don’t Hate Las Vegas Anymore.” Sharing some cashews from the vending machine, he leaned over to me, pointing, and said, “that’s your grandfather.” Both the grandparents I knew were dead. But being reminded, just for a moment, that I have more family out there, including two other grandparents, that was a blessing.

The other special moment happened after 3 AM (both Caveh and I are night owls). He walked me to my car to say goodbye. There was a lot of shuffling and twitchiness and not a whole lot of warmth. But we both noticed the chalky full moon. As he walked away, I watched his narrow, suited figure slip away, with the same moon watching over us both. I had the urge to take a picture and capture that moment, but I was afraid he would look back.

So, where are we now? Most recently, we’ve been editing “I Am A Sperm Donor” together. While watching clips of our film, I had the chance to watch myself. Hair done up in pin curls, makeup on, beaming. When Caveh opens the door and asks if he can give me a hug, I let out this little girlish giggle—so eager to please—and say, “yeah!” Willing to do just about anything for my dad. Seeing this from the outside, I am struck with a pang of grief. Grief for that little girl who missed out on all the daddy-daughter dances and first introductions of her new boyfriend and graduations with her dad standing in the audience, waving proudly. I deserved a standing dad.

You know, I had planned for this essay to also address all the reasons why donor anonymity shouldn’t exist: there is no way to prevent a donor lying on an application and there’s no limit to how often a donor can donate at many clinics. Anonymity deprives donor offspring of important medical information, such as risks for potential cancers and genetic disorders, and half-siblings run the risk of committing incest if they don’t know they’re related. The list is endless.

But somehow I realized that the primary point I want to emphasize is the relationship you lose out on when your donor is anonymous. There’s no one to whom to attribute that dark, curly head and olive skin and those almond-shaped brown eyes. And where’d you get that tiny figure with no hips? And why are you so assertive and reckless and obstinate? Certainly not from Mom’s side of the family. The closest comparison I can make is to phantom limb syndrome. You feel this burning pain where one of your legs used to be (though I suppose I was never born with that leg) and the only way to quench the pain is to hold up a mirror to your other leg to trick your mind into believing you have full function of both limbs. That’s what it’s like growing up with a single mom; especially one who tries her best to be both mom and dad. But when you find your father, it’s like you’re finally fitted with a prosthetic and you’ve been given a chance at approaching a normal life. You’ll never have two real legs, but other people might think you do and eventually you’ll start to believe you do, too.

Caveh and I don’t have a great relationship, and it’s strange and awkward and uncomfortable and not warm. But there is also a beauty in having shared this experience with him, of having met—father and daughter—for the first time. I am grateful for the circumstances, and I am very curious to see how our relationship unfolds in the coming years, but it’s not a picture-perfect story. This is really meant to describe the grief and repercussions of not having met your bio parent, and the completely earth-shattering and ambivalent emotions that occur when you find out that the person is not at all how you pictured. I couldn’t have written about how grateful I am to have met him and how happy I am to know him, since that would be a lie. And if he said that, it would be a lie too.Sarah Blythe Shapiro is a 20-year old student from Wilmette, Illinois, conceived by donor sperm and raised by a single mother by choice. She has always known she was donor conceived. Her mother used an Open ID at 18 donor, since known donors were not available at the cryobank. Since discovering that her donor is a famous filmmaker, she has found 14 half-siblings. Shapiro is a passionate advocate for the rights of donor conceived people and is hoping to encourage families and donors to prioritize the needs of their donor conceived offspring. She actively works to explore the intersectionality of donor conception as it pertains to both LGBTQ fertility rights and racial biases of cryobanks and clinics.Severance is not monetized—no subscriptions, no ads, no donations—therefore, all content is generously shared by the writers. If you have the resources and would like to help support the work, you can tip the writer.

On Venmo: @sarahblytheshapiroBEFORE YOU GO…

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Recognizing the challenges facing individuals who experience DNA surprises, Adoption Network Cleveland (ANC) has launched the DNA Discoveries Peer Support Group, a virtual peer support program focused on the emotional impacts of the journey. It kicks off with a special panel on February 2 facilitated by ANC’s search specialist, Traci Onders, that will feature an individual who’s discovered misattributed parentage, a donor-conceived person, and adoptees who have found birth family. Onders spoke with us about the program and the personal journey that led her to working with ANC.

How did you come to Adoption Network Cleveland and how did you become interested in this work?

I started as program coordinator for adult adoptees and birthparents in 2016. I’d begun volunteering at Adoption Network Cleveland (ANC) prior to that because its mission was personally important to me. Adoption Network Cleveland advocated for adoptee access to records in Ohio for more than 25 years, and finally in 2013 Ohio passed legislation that opened up original birth certificates to adult adoptees. It’s hard to imagine this would have happened without the steadfast determination of ANC, and as an adoptee, I wanted to give back to the organization that made it possible for me to request and receive my original birth certificate. ANC is a nonprofit organization and has a reputation for advocacy rooted in understanding, support, and education—a meaningful mission to me.

I was born to a woman who had been sent to a home for unwed mothers to hide the shame of pregnancy from the small town in which her family lived. There was no counseling available for the grief of relinquishing a child, and she was told to go on with her life and forget about it. These homes no longer exist; we know now how awful and hurtful this practice, rooted in shame, is.

My birthfather died a year later in a tragic accident. He was also an adoptee, raised as a son by his maternal grandparents. I will never know if he knew who his father was, but thanks to DNA, I do.

I first searched for my birthmother more than 20 years ago after my children were born. Pregnancy and childbirth made me want to know more about the woman who carried me and gave me a deep understanding that she made decisions that had to be extremely difficult and painful in a way that I had not previously appreciated. I had complicated pregnancies and no medical history for myself or my children. As a mother, I felt compelled to know and understand more about both my history and my beginning. At that time, I discovered that the agency that handled my adoption, Ohio Children’s Society, had destroyed its records. I had no information at all to work with, and my search hit a brick wall. It was important to me that I connect with my birthmother in a way that was respectful. I didn’t know if she had told anyone she’d relinquished me, and I was concerned that if I hired a private investigator, the PI might use tactics that I wasn’t comfortable with or make a possible secret known to others, and that this somehow might hurt my birthmother or her family. Until I could request my original birth certificate in 2015, I didn’t have many options. In 2015, adoptees were finally able to access their original birth certificates in Ohio, and when I did this, it named my birthmother. I also discovered that I have a maternal half-sister. My birthmother and I reunited very shortly after that. I was finally able to learn her story and to gain a more complete and ongoing medical history. Knowing these things and my relationship with her have been blessings in my life that for many years I did not imagine would be possible. A few months later I met the extended family, and their warm welcome touched my heart.

My search for my birthfather led me to test my DNA at Ancestry and 23andMe. I‘d been told who he was, but since he died very young, I did not have the opportunity to connect with him or understand his story. Using DNA, I was able to confirm what I’d been told, which allowed resolution that I might not have been able to find in such ambiguous circumstances. He was a kinship adoptee, and I was able to determine his parentage.

I learned that although he died when he was twenty-three years old, he’d had three children with 3 different women—that I have two paternal half-brothers, both born to different woman. The first died as an infant. The second brother took a DNA test to learn his ethnicity. He discovered misattributed parentage—that the man who raised him and is on his birth certificate is not his biological father and that I am his paternal half-sister. We don’t know if his father knows, or even if his mother knows for sure. He doesn’t want to discuss this with them, and that’s his decision.

At ANC, we use DNA to help adoptees solve for unknown parentage, and my own search made me acutely aware of how much in recent years DNA was tearing down brick walls and helping connect people who might otherwise never find each other. It also made me particularly sensitive to the fact that some of these discoveries can be quite earth-shifting for people.

As my work in this area grew, I was promoted to search specialist to greater focus on assisting those in search, utilizing both traditional methods and DNA. ANC provides support and guidance throughout the journey of search—before, during and after—and has for more than 30 years. I came to appreciate how many people outside the adoption community were also  touched by DNA discoveries.

My own personal history of search and reunion give me an important connection with the people I work with because I can truly understand how these questions can consume one’s thoughts and time. I can relate to the frustrations, the joys, the sadness, the loss, the quest for knowledge when one doesn’t know their “chapter one,” the feeling of having to write “medical history unknown—adopted” every time one fills out medical forms or sees a new healthcare provider. Having reunited with my birthmother, I know the roller coaster of emotions that reunions can bring. I have a deep respect and understanding of the birthparent’s experience because of my work with many birth families and also my connections to my birth family.

Through my own journey, I have come to realize many things about adoption. It’s a lifelong journey, and not a one-time transaction. My work helping others separated by adoption to find each other—whether it is adoptees searching for birth family, birth family searching for adoptees, or more recently people that have DNA surprise discoveries—has revealed many complexities and similarities. When we shine a light on these discoveries, we find the impacts of secrets, shame, infertility, racism, money, power, privilege, mental health, abuse, neglect, domestic violence, trauma, addiction, grief, loss, religion, social class—to name a few. For me, it’s important to advocate for progressive practices and reform in adoption and child welfare.

The DNA Discovery Peer Support February 2 panel discussion is a joint endeavor by Adoption Network Cleveland and Adoption Knowledge Affiliates. Can you describe the nature of the collaboration?

Adoption Network Cleveland founded in 1988 and Adoption Knowledge Affiliates founded in 1991 have a lot in common. Both organizations were founded by adoptees with a vision to bring together adoptees, birthparents, adoptive parents, and professionals in an effort to increase knowledge, service, and understanding. Both have been impactful organizations over the years. With the pandemic and our world going virtual, ANC and AKA partnered to host a joint virtual conference in October 2020, combining conferences each organization had planned and been forced to cancel in the spring.

At ANC, we had been discussing how to better meet the needs of people who were coming to us with DNA discoveries—not only adoptees but those with misattributed parentage, individuals who are donor conceived, and others. Adoption Knowledge Affiliates started its DNA Discovery Peer Support Group in Sept. 2020, and ANC planned to start one in 2021. Adoption Network Cleveland and AKA are collaborating for the panel discussion on Feb. 2, and from there each will individually hold its own DNA Discovery Peer Support groups. People who might find more than one meeting a month helpful might like to have options.

How was ANC’s DNA Discoveries Peer Support group developed and conceived and why it was felt to be necessary?

At this point the majority of searches we assist with have a DNA component. In addition, we’d like to increase engagement of people with DNA discoveries beyond adoption-based situations. We have expertise in this area and would like to be a resource in a broad variety of situations. People are finding biological family or are being found; and they’re finding new information about their core identity, such as ethnicity, birth order, unexpected relatives, and more. There can be a wide range of reactions by those being found and those searching.

Many of the issues that folks are working through with a DNA discovery are the very same core issues experienced by the adoption community, such as loss, rejection, guilt and shame, grief, identity, intimacy, and control.

We felt uniquely positioned to offer support and guidance in a manner similar to what we have been doing through our General Discussion Meetings, which are open to anyone touched by adoption and/or foster care. Adoption Network Cleveland started holding these meetings more than 30 years ago, so we bring deep knowledge and the meetings evolve to meet current needs. More information about those meetings can be found here.

Adoptees who are using DNA to make these discoveries are excited to find new information and new relatives. It can be important to remember that we don’t know what this discovery might mean for the person on the other side, such as in the case of misattributed parentage for example, where someone might be learning that the man that raised them isn’t their biological father.

We wanted to create a safe place for people to speak about the emotional impact of these discoveries, in a confidential environment with people who have walked a similar journey and truly understand.

Are the groups being held via Zoom? Are they virtual as a consequence of COVID-19 or will they remain open to people from any location when virus restrictions lift?

We will be using Google Meet, which is a lot like Zoom. The DNA Discovery Peer Support Group and our General Discussion Meetings are free, but advance registration is required so that one can receive the link for the meeting. The meetings are the second Tuesday each month, 8-10 PM Eastern Time. Registration can be found on our calendar. We plan to assess and see once it’s off the ground if the meetings will remain structured virtually. Personally, I see this continuing as a virtual group if there is a demand.

How do you envision how these groups will go? Will each group meeting be facilitated? By you? What’s the goal and desired outcome?

Our group will be focusing on the emotional impact of DNA discoveries. This is something that all discoveries have in common, and this will be a place where people can really connect and provide understanding, another perspective, and support. Our DNA Discovery Peer Support Group and our General Discussion Meetings are facilitated by experienced volunteers who are supported and overseen by our staff. I will be assisting with the DNA Discovery Peer Support Group as needed, and, as a search specialist, I am available for individualized guidance, one-on-one search assistance, and support. The experienced volunteer facilitation team members chosen for the DNA Discovery group are both adoptees with their own personal DNA discoveries. The group they lead is shifting from being one of ANC’s six monthly General Discussion Meetings to meet this specific need.

Our goal with the DNA Discovery Peer Support Group is to provide a safe and supportive environment where people feel open to discuss a major life event—finding out new information about themselves and their identities. One does not need a connection to adoption to attend these meetings. We will be focused on supporting people throughout their journey and helping them to connect with others who truly understand how earth-shifting this can feel, how others have worked through their own discoveries, and the accompanying emotions. We understand these types of discoveries are not a one-time event, they are lifelong journeys. Connecting with others who have walked a similar path can help to normalize what can be an overwhelming experience.

What do you believe are the most significant issues, the most pressing concerns, for which people need support after a DNA Discovery?

Every situation is individual and unique, so it’s hard to generalize. However, the core issues that arise are very much the same that we know from adoption and permanency: loss, rejection, guilt and shame, grief, identity, intimacy, and control.

DNA testing has the power to unravel decades old secrets and can make individuals question their ideas of family, or religion, or even morality. I am a firm believer that everyone has a right to know their genetic heritage, but that does not mean anyone has a right to a relationship, as that is something for both parties to determine. Many people who take a DNA test do not think they will receive a result that might include a surprise such as a different ethnicity, or a new sibling, a different parent, an unknown child, a niece or cousin. Discoveries can also include learning one is adopted (late-discovery adoptees) or donor conceived. These can be a very powerful experiences and can upend long held beliefs.

In what ways do you believe peer support makes a difference? How does it help?

Connecting with others who have been there and understand can be normalizing and healing.

We have followed a peer support model for our General Discussion Meetings for more than 30 years with great success. We’ve welcomed those with DNA discoveries to these meetings as technology has evolved. It can be extremely valuable to hear the perspectives of other individuals who have walked a similar journey and truly understand. I’ve seen people make wonderful connections with each other and learn insights that might not have happened anywhere else. Peer support offers a place to work through some of the core issues such as loss, rejection, grief, identity, shame and guilt. Hearing how other’s work through their journeys provides a variety of options as we consider connecting with relatives and offers a chance to see how people have gained a sense of control over the experience of discovery, and not have it control them. Peer support also offers an opportunity for people who are farther along in their journey to give back.

What limitations are there, if any, to peer support? 

Peer support is not meant to take the place of therapy, and individual therapy can be a very powerful and healing experience. Accessibility can be a limitation for some.

In addition to the peer support group, ANC also offers a Monday evening speakers group. Can you tell us more about that?

Adoption Network Cleveland is a leader in bringing the adoption community together to create a network of support and advocacy. In this critical and uncertain time for all of us, we are pleased to offer a Monday Evening Speaker Series full of topics that are of interest to a broad audience impacted by adoption, kinship, and foster care. More information and recordings of past presentations can be found here.

Learn more about the DNA Discovery Peer Support special February 2 panel and the ongoing group here. And for information about other programs and events, click here.

Look for Adoption Network Cleveland on Facebook and Instagram and Twitter @adoptionnetcle. Look for Adoption Knowledge Affiliates on Facebook and onInstagram @aadoptionknowledgeaffiliates.Traci Onders is a search specialist at Adoption Network Cleveland (ANC). An adoptee herself, she’s facilitating ANC’s new DNA Discovery Peer Support Group special panel on February 2. 

By Aimee Rose-HaynesDirect-to-consumer DNA testing via Ancestry, 23andMe, and other companies has rapidly replaced the arduous tasks of hands-on library research, grave searching, and contacting strangers for the purposes of finding long-lost relatives—a tremendous advance since just a decade ago, when locating biological family or records to validate family lineage was a near impossible feat.

While these tests—which rely on saliva samples—are simple, quick, and affordable, interpreting the results is often a confusing and time-intensive process.

An International Case

In November 2019, I took on a special challenge that illustrated the tenacity needed to solve cases. The case involved a search for records from Panama and Columbia to help determine the client’s origins. Bob called on DNAngels to help him find his mother’s biological father. Ann, his mother, was born in New York in 1961 and raised by an Italian-American mother and stepfather. Her mother refused to tell her who her biological father was and took his name to the grave. Ann thought that was it—that she’d never know her paternal family—and gave up on the thought of trying to find him.

Bob, wanting to help his mother in any way possible, ordered Ancestry DNA tests for her, himself, his sister, and a few other relatives. Once he received the kits, he mailed them back immediately in hopes of finding the man Ann had spent decades wondering about and answering her questions. Was he tall? Was he a nice man? Where was he raised? What were his parents like? What did he look like?

Bob found the results that arrived a few weeks later both exciting and confusing. Ann’s ethnicity report had significant amounts of Spanish, Panamanian, and Columbian heritage. This gave them their first clue about where her biological father could be from. For Bob, looking at the numbers and trying to figure what it all meant was like trying to read a foreign language. He needed help.

The Search
Bob contacted DNAngels in the autumn of 2019 for help solving his mother’s DNA parentage puzzle. I requested access to his family tree and his mother’s DNA and went to work. I started by sorting his matches and separating Ann’s maternal and paternal lines. This was very easy to do since Bob had gotten tests for so many people in the family.

I looked at Ann’s matches and anticipated that the matching process would be difficult. Ann had six matches in the range of 108 centimorgans (cM) to 184 cM. A cM is a unit of measurement representing the length of DNA shared by two DNA matches. Testing companies use an approximate range of roughly 8 cM to  3,700 cM to determine relationships. The higher the cM, the more closely one is related to a match, with 3,700 indicating a parent/child relationship. I began by looking at the trees of all of Ann’s matches to try to isolate a most recent common ancestor (MRCA). Unable to get very far, I updated Bob, with whom I was in daily contact at this point in the process.

Bob informed me that some additional family members had also taken a 23andMe DNA test, and with their login information in hand, I hoped to locate a missing puzzle piece. I had handwritten charts, sticky notes, and highlighted names all over the living room table and floor for nearly two months for this case!

I was able to build a tree based on Ann’s 186 cM match and discovered that Ann’s great grandparents and second great grandparents were the same couple. This indicated that Ann’s 186 cM match was inflated due to endogamy—the custom of marrying only within the limits of a local community, clan, or tribe. So that became another puzzle to work through. Complicating things still further was that two matches on 23andMe were uninterested in helping.

Nonetheless, I persisted, finally finding an MRCA and building the family tree, which included 9 children. I then began linking Ann’s DNA matches to the familial lines that were slowly coming together and soon was able to eliminate three lines, leaving five lines left to trace.

I began researching, reading through US, Columbian, and Panamanian newspaper clippings—obituaries and public records including port arrivals and departures—as well as social media, searching for anything that might help expand this family tree. Bob was also relentless in helping to track and contact anyone in these family lines.

I never imagined I would ever use what I’d learned in Mr. Flores’ high school Spanish class; if I had, I’d have paid more attention back then. Bob sent me messages and voice recordings from potential family members, most of which were in Spanish. Using Google Translate much more than I’d like to admit, I learned a few important things necessary to solve this case.

Bob had discovered that the MRCAs had taken in and adopted two sons. A week later, I discovered that another son had never left Panama. This narrowed the search from five family lines to two and the details finally started to come together.

Now left with two brothers as potential candidates for Ann’s grandfather, Bob and I were excited as we got closer to solving the case. By this point, I’d worked on this daily for about 10 weeks and refused to give up. I continued digging even deeper into these two men, John and William, trying to place either man from Columbia in New York, where he might have met Ann’s grandmother.

William was born in Columbia, and I located a record of him having lived in New York. He actually married someone who was related to Ann’s maternal line. This union proved he had been in the same area as Ann around the time she was born. William had 2 daughters and a special needs son who was eliminated as a suspected biological father. Bob, who had been in contact with one of William’s daughters at this time, had William’s granddaughter tested, which revealed that she shared 236 cM with Ann. This excluded William, because if he’d been Ann’s paternal grandfather, his granddaughter would be expected to match Ann at a half niece relationship (Ann and the granddaughter’s mother would be half-sisters), or about 600 cM to 1,300 cM.

John, the other potential grandfather to Ann, was a soldier in the U.S. Army who was killed in action in Korea. I found a port arrival record showing he came to New York in 1928. I also found a record indicating he married in New York a year later. He would go on to have daughters as well as three sons—Manny, Greg, and Jake.

Manny died in infancy, and Greg couldn’t be located, so Jake was the only possible relative to search for. If Jake were still living, he’d have been roughly 90 years old. Fortunately, one of the cousins Bob had contacted knew that Jake was still living and was in New York. That cousin helped Bob get in touch with Sam, one of Jake’s sons, who was shocked when Bob told him DNAngels had discovered his father might have been Ann’s biological father. He was intrigued and willing to help. Bob sent him a DNA test in late January 2020 to confirm the suspicion.

While Bob waited on pins and needles for Sam’s test to come back, I stayed busy and continued to research and build the family tree. Sam’s test came back on March 6, 2020, revealing that Ann and Sam matched at 1,455 cM, confirming a half sibling relationship. Jake was her biological father. Bob sent a DNA test to Jake, the results of which showed a 3,299 cM—an amount signifying a parent-child relationship. I’d solved Ann’s case after nearly five months.

Ann went from knowing nothing about her paternal line to not only knowing her father’s name but also being able to meet him. She now has 9 half-siblings as well as several aunts, uncles, and cousins. Jake’s family has welcomed her and her family into their lives with open hearts.

Never give up!If you have a question you’d like to see answered in a future column, send it to bkjax@icloud.com.Aimee Rose-Haynes is a lead genetic genealogist for DNAngels and a member of the International Society of Genetic Genealogy and the National Genealogical Society. She has 20 years of traditional genealogy and 6 years of genetic genealogy experience.

Stephanie Leslie and Margaret Renner also contributed to this article.DNAngels, an organization dedicated to DNA results interpretation and more, was founded by Laura Leslie-Olmsted in February 2019 with the goal of helping not parent expected (NPE), adopted, and donor-conceived clients find their biological families. Seven months after being founded, it became a 501(c)(3) nonprofit organization. In 2019, the team solved approximately 550 cases; in 2020, it solved 697 cases, and it expects to continue to increase those numbers in 2021. DNAngels has a 92% case solve rate, which means the majority of its clients find the answers to their parentage mysteries. In 2021, it is dedicating every month to a specific theme. The theme for January is “Never Give Up” to highlight DNAngels’ dedication to finding answers for the 8% unsolved or “on hold” cases. Learn more about DNAngels at its website, and find it on Twitter @Dnangels4 and on Instagram @Dnangelsorg.

Don’ t miss the latest in a series of webinars from Right to Know (RTK), a nonprofit organization that advocates for the rights of MPEs (misattributed parentage experiences)—including adoptees and those conceived through assisted reproduction—and NPEs (not parent expected).

On Sunday, October 18, from 4pm-5:30pm EST, the webinar will address mental health issues experienced by MPEs. Moderated by DrPh candidate Sebastiana Gianci, the panel will include Jodi Klugman-Rabb, LMFT, therapist, cohost of the podcast Sex, Lies & The Truth, and creator of the innovative training program Parental Identity Discovery; Cotey Bowman, LPC associate, creator of the NPE Counseling Collective; and Lynne Weiner Spencer, RN, MA, LP, a therapist specializing in donor conception, adoption, and the experiences of NPEs and MPEs.

Among the topics to be explored are trauma, identity, grief, ambiguous loss, anxiety, and rejection.

In November, the series’ presenter will be Libby Copeland, award-winning author of The Lost Family: How DNA Testing is Upending Who We Are. (Look for our Q & A with the author here.)

And in December, RTK’s webinar features the DNA Geek Leah Larkin, an adoptee and genetic genealogist. If you’d like to attend the upcoming webinar, request the Zoom link at RSVP2RightToKnow.us and check out RTK’s event page to stay in the loop about upcoming presentations.

If you missed the last webinar, “Understanding the Medical Ramifications in Your DNA Test,” you can watch the recording.

Right to Know, created by Kara Rubinstein Deyerin, Gregory Loy, and Alesia Cohen Weiss, aims to educate the public and professionals about “the complex intersection of genetic information, identity, and family dynamics.” It works, as well, to change laws with respect to related issues, including fertility fraud. Find it on Facebook and on Twitter and Instagram @righttoknowus.BEFORE YOU GO…

Look on our home page for more articles about NPEs, adoptees, and genetic genealogy. And check out our articles on the topics that will be discussed in RTK’s webinar: disenfranchised grief, stages of grief, ambiguous loss, rejection, and trauma.

• Please leave a comment below and share your thoughts.
• Let us know what you want to see in Severance. Send a message to bkjax@icloud.com.
• Tell us your stories. See guidelines here.
• If you’re an NPE, adoptee, or donor conceived person; a sibling of someone in one of these groups; or a helping professional (for example, a therapist or genetic genealogist) you’re welcome to join our private Facebook group.
• Like us on Facebook and follow us on Twitter and Instagram @Severancemag.

It was a movement waiting to happen. It only needed a catalyst. Enter Dr. Laura Schlessinger, an unapologetic bully and “infotainment” therapist masquerading as a helping professional. Host of the Dr. Laura program, heard daily on SiriusXM Radio, Schlessinger bills herself as a “talk radio and podcast host offering no-nonsense advice infused with a strong sense of ethics, accountability and personal responsibility.” A Los Angeles marriage and family therapist, she’s no stranger to controversy. For example, there was criticism when it became known that in the early days of her television program her staff posed as guests, and outrage when two decades ago she declared that homosexuality was “a biological error” and made racist comments that temporarily derailed her radio career. Now, her SiriusXM program, with an audience of eight million listeners, doesn’t shy away from the sensationalism that ratchets up the ratings.

Recently, she directed her venom at NPEs (not parent expected.)

In the program’s July 7 Call of the Day, “My Mom Never Told Me the Truth,” Torri, the caller seeking Dr. Laura’s help, stated she wasn’t sure how to continue on in her relationship with her mother after recently learning her dad wasn’t her biological father. Schlessinger asked if the man who raised her was nice. After Torri responded that he was, Schlessinger launched into an assumption-filled toxic diatribe. She berated Torri, asking “What in the hell is wrong with you?” When Torri tried to explain she was upset by her mother’s lying, Schlessinger responded by saying, “So what? So what? Who gives a shit?” She continued to defend Torri’s mother while dismissing and disparaging the vulnerable caller, leaving Torri barely able to speak. “I seriously would rather smack you across the head than anything else right now, you ungrateful little twit. You insensitive, ungrateful twit.” When Torri, after a stunned silence, tried to respond, Schlessinger interrupted. “You’re a twit for saying that. You’re a twit for repeating it.” She continued for several excruciating minutes to bully and berate her caller.

Word of the episode spread quickly among adoptees, donor-conceived people, NPEs, and others affected by separation from biological family. As more and more people listened to the podcast, outrage surged from one Facebook group to another like jolts of electricity. Soon, members responded to Schlessinger on her website and on social media, many demanding an apology, some clamoring for a boycott of her program, and others calling for the radio host to be stripped of her license to practice psychotherapy. The complaints appeared to fall on deaf ears as the complainers were quickly blocked from Schlessinger’s social media accounts. A post on her Facebook page overrun with comments about the episode, however, was quickly shut down.

Therapists soon weighed in as well. Jodi Klugman-Rabb, LMFT, wrote an article about Schlessinger’s breach of provider ethics, and Eve Sturges, LMFT and host of a podcast, “Everything’s Relative,” released an “emergency” episode to bring awareness to the issue.

I grew angrier by the day, says DNAngels’ search angel Ashley Frazier, “and on July 1, I put out a call in all the groups I’m in that it was time to speak up and let our voices be heard. Torri’s call was a rallying cry for members of our communities, who are often faced with rejection and the judgment of people in their lives who share the views of Dr. Laura, simply for wanting to know the truth about their genetic identity.”

When a friend shared with her a link to the show, Erin Cosentino, of the Facebook group NPE Only: After the Discovery, couldn’t bring herself to listen at first. “It took me a few hours to work up the courage,” she says. Reading the comments first inspired her to move ahead. “So many people were in support of Dr. Laura’s comments, and I was sickened by that, so I listened.” She and her friends spent days discussing the podcast and debating about what to do and how to educate the people who supported Dr. Laura. Then she saw the post written by Ashley Frazier. “It was so in line with everything my friends and I had been discussing that I asked permission to share it. I was meant to see it. It was meant to be. Within minutes we were planning.”

“We spent the evening messaging about strategy,” says Frazier. “Our plans quickly evolved into the two of us starting a group together, and by morning we had a group chat with more than 30 people discussing bigger plans than we could ever have imagined. Within 24 hours, we had our own private group formed with nearly 100 members brainstorming and offering to help achieve our mission.”

What they created that evening is the Coalition for Genetic Truth, which has united 27 NPE, adoptee, late discovery adoptee (LDA), search angel, and donor/surrogacy conceived support groups with combined memberships totaling more than 105,000 people.

The coalition now has both a public and a private group on Facebook whose 400 members include individuals from the various communities as well as their allies. Frazier and Cosentino quickly assembled a team of friends and fellow advocates to moderate the groups and represent all of the various communities with a stake in issues related to genetic identity—Laura Leslie, Emily Ripper, Kayla Branch, Annie Persico, Cindy Olson McQuay, Cassandra Adams, and Kathleen Shea Kirstein.

“The initial goal of the coalition was to raise our voices to speak out against Schlessinger’s abusive treatment of Torri,” says Frazier. “But we very quickly realized there were more effective ways to spread our mission in a positive manner,” adds Cosentino.

At first they focused on sending email messages, making phone calls, issuing a press release, and creating a petition that’s now been signed by more than 1,300 people calling for an apology from Schlessinger. “Realistically, we know we’re not going to get an apology. This step was simply a springboard to get to our greater mission, which is to be a united voice that gets the community and the public talking and recognizing that there’s a need for education about the importance of knowing one’s genetic identity,” she adds. It’s important, she says, for the burgeoning population of identity-disenfranchised people to be able to find their way to these communities “and know that there are tens of thousands of people in our support groups who can truly understand what they’re going through, give advice based on experience, and support them without judgment. As hard as our friends and families try to be supportive, they can’t put themselves in our shoes and often make hurtful and dismissive comments, such as ‘This doesn’t change anything,’ or ‘Your dad’s still your dad.”

Equally important as connecting community members to resources, says Frazier, “is to educate our known and newfound family members and friends about how they can better support us during this difficult time. There’s also a huge need to educate mental health professionals about this important issue and enable them to provide resources to their clients.”

Join the public or private Facebook group and follow the coalition on Twitter @GeneticTruth and on Instagram at #coalitionforgenetictruth.Among the members of the Coalition for Genetic Truth are the following.*

ADVOCACY

Right To Know On Twitter and Instagram @righttoknowus and on Facebook 

COUNSELING/THERAPY

Eve Sturges, LMFT: a licensed marriage and family therapist in Los Angeles. On Twitter and Instagram: @evesturges

NPE Counseling Collective: group of therapists specializing in best therapeutic practices for the NPE community.

Jodi Klugman-Rabb, LMFT: a licensed marriage and family therapist and creator of Parental Identity Discovery (see NPE Counseling Training below). On Twitter @JodiRabb, Instagram @jkrabbmft, and Facebook

FACEBOOK GROUPS

Note: Not all groups are open to everyone. Check the “About” section of each group for restrictions and to determine whether you are eligible to become a member.

Adoptees, NPEs, Donor Conceived & Other Genetic Identity Seekers

Adoptees Only: Found/Reunion The Next Chapter On Instagram @adopteesonly

Adoption Search & Support by DNAngels — Adoptee/LDA

DNAngels Search & Support — NPE/DC

DNA Surprises

Donor Conceived People

Donor Conceived People in/Around NY

Friends of Donor Conceived Individuals

Hiraeth Only: Longing for Home

The Mindful NPE On Twitter and Instagram @TheMindfulNPE

MPE Cross Cultural Connections

MPE Jewish Identity Surprise

NPE Counseling Collective

NPE Only: After the Discovery On Twitter @NPEsOnly1

Pacific NW MPE Life

GENETIC GENEALOGISTS/SEARCH ANGELS

DNAngels On Twitter @DNAngels4 and Instagram @DNAngelsorg

Enlighten DNA: Email: Truth@enlightenDNA.org

MEDIA

Severance Magazine On Twitter and Instagram @Severancemag and Facebook

NPE COUNSELING TRAINING

Parental Identity Discovery

PODCASTS

NPE Stories, hosted by Lily Wood

Everything’s Relative with Eve Sturges

Sex, Lies & the Truth, hosted by Jodi Klugman-Rabb and Christina Bryan Fitzgibbons

Find more resources about adoptees, NPEs, donor-conceived people, and others with genetic identity concerns in the “Resources” tab top right here.BEFORE YOU GO…

Look on our home page for more articles about NPEs, adoptees, and genetic genealogy.

• Please leave a comment below and share your thoughts.
• Let us know what you want to see in Severance. Send a message to bkjax@icloud.com.
• Tell us your stories. See guidelines. 
• If you’re an NPE, adoptee, or donor conceived person; a sibling of someone in one of these groups; or a helping professional (for example, a therapist or genetic genealogist) you’re welcome to join our private Facebook group.
• Like us on Facebook and follow us on Twitter and Instagram @Severancemag.

By B.K. Jackson

Libby Copeland

Just over a decade ago, when autosomal DNA tests first hit the market, offering consumers a new tool for advancing genealogical research and a way to discover genetic cousins, few imagined how popular these tests would become. In this short span, more than 30 million Americans have traded a hundred bucks and a spit or swab sample of DNA for a backward glimpse into their ancestry.

The majority of testers get precisely what they pay for—a pie chart indicating their ancestral heritage and a list of DNA cousin matches. They learn from whence and from whom they came—information that makes them feel better connected to their forebears and more knowledgeable about themselves in some essential way. Countless others, however, get much more than they bargain for and—sometimes—more than they can handle. For these consumers, DNA testing leads to a genetic disconnect from their families and the erasure of an entire swath of their self-knowledge. They discover that they’re genetically unrelated to one or more of their parents.

Even more shocking than the existence of these genetic disconnects is their sheer numbers. Although no one knows exactly how many testers have discovered misattributed parentage—and estimates within the general population are likely overstated—headline after headline and the swelling ranks of secret Facebook groups devoted to supporting those disenfranchised from their families suggest the numbers are significant.

These genetic seismic events are only part of the reason many view direct-to-consumer DNA testing as a Pandora’s box. Just as no one could have guessed how many genetic identity crises might arise in the wake of testing, the depth and breadth of the potential repercussions were unimaginable, as were the contours of the ethical and moral dimensions.

More than anything, the widespread availability of DNA tests has created a nation of what Libby Copeland, in her extraordinary new book, calls seekers. Although rigorously researched and dense with information, “The Lost Family: How DNA Testing is Upending Who We Are,” is a page-turner. The author, an award-winning journalist, crisscrossed the country talking to industry leaders, educators, and influencers. She immersed herself in the wide world of DNA testing, followed debates on social media, and attended conferences, and yet she wondered whether the velocity of change in the industry was so great that even she couldn’t keep up. And at the same time, she worried that the media saturation about DNA testing was so thorough that what she’d learned was already old news. “But then I would remember that I was in a bubble,” she writes. “The people who were getting DNA kits for Christmas had no idea what was coming for them. And the ramifications of what they might find would not be short-lived; rather they amounted to a fundamental reshaping of the American family. It was something they would deal with for the rest of their lives and pass on to the generations that follow.”

I thought I knew a great deal about DNA testing and had a reasonable grasp of its myriad ramifications until I read “The Lost Family,” in which Copeland expertly drives home how much bigger the subject is than most of us—even those of us deeply affected—realize. She takes readers through the history of genetics and all of its promise, then explores equally its dark side—eugenics and the dangers of genetic essentialism—and considers the broad range of ethical minefields planted by present day DNA testing. “One of the central conundrums of spitting into a tube is the way one person’s rights so often collide with another’s after the tube is sealed and sent in,” Copeland observes. And so many rights are at stake—from the right to privacy with respect to genetic data to the right of offspring to know who their parents were and what their health risks might be.

As she delved deep into her research, Copeland came to believe “we are embarking on a vast social experiment, the full implications of which we can’t yet know.” But what follows suggests that the boat left the dock some time ago and is churning in choppy waters. While the full implications are beyond imagining, the author does a stellar job of exploring the implications that have become apparent. She dissects DNA testing and explores it from every aspect, mapping the perspectives of all involved—the test makers and takers, the lawyers, the genetic and forensic genealogists, the ethicists who ponder the ramifications, and the people who are on the receiving end of contact from test takers—and shows what the stakes are for each.

As intriguing as all that is, Copeland is nowhere more captivating than when she’s telling the stories of the seekers—the “people obsessed with figuring out just what’s in their genes”—and follows them down the rabbit holes that swallow them as they try to figure out where they come from. She categorizes seekers into three groups: avid genealogists for whom DNA testing is just an extension of their research; those propelled by suspicions that something is off-kilter in their families or who know they have biological family to find, such as adoptees, donor-conceived people, and other NPEs; and the hapless folks who tested for “recreational” purposes and were rocked by a finding they never saw coming.

Copeland spoke to more than 400 such seekers during the course of her research, and she braids many of their stories throughout the text to illustrate why and how people seek and the ways their lives are changed by the pursuit of truth. There’s the geneticist who found that the man she believed was her father was not genetically related. There’s the foundling who had been placed in a basket and left in front of the home of a pastor. There are the seekers who search and are shut out by their biological relatives. There’s the woman in her fifties who developed symptoms that might have been related to ovarian cancer. She’d recently been given information suggesting she was half Ashkenazi Jewish, which meant she might have a BRCA1 or 2 variant, increasing her risk of breast and ovarian cancers. A medical grade DNA test didn’t suggest that she had the variants, but her doctors thought a radical hysterectomy was still warranted by her Ashkenazi heritage. She took a DNA test to learn more about that heritage, and the results showed she had no Ashkenazi ancestry. She discovered she’d been adopted. The worst part, perhaps, was that others in her family knew and didn’t stop her from having the surgery.

But the anchor of the book is the story of Alice Collins Plebuch, a super tech nerd who used her exceptional skills in a two-decades’ long quest to learn more about her family history only to stumble on a spectacularly thorny family mystery. “It is a strange thing to look in the mirror at the face you’ve grown old with and find you don’t quite recognize it,” she told Copeland.

And through Alice’s efforts to understand her unexpected DNA test results, Copeland, weaving her story throughout the book, traces the genesis of a seeker. “Even if you didn’t mean to ask the question, once it’s asked, it will be answered. And once it’s answered—well, for many people, there’s something pretty compelling about knowing there’s a mystery man out there who gave you half your genetic material. How do you not open that box? How do you not want to see your face in his, or to hear the timbre of is voice? How do you not wonder: Would he like you? Would he be glad you came into his life? This is how seekers are made: One question lead to another.” But, she’s quick to observe, there’s no telling how the objects of one’s quest will respond to those questions—an uncertainty that drives an enormous amount of anxiety and, potentially, trauma, for which, she adds, there’s a dearth of supportive services.

These stories involving DNA testing, Copeland says, reveal “how it can delight—and how it can disappoint.” And through them she’s able to pose the big questions:

Is it better to know the truth a test reveals?

Who owns a secret?

What does it feel like to have been lied to?

What is it that forms identity? Is it cultural or biological?

What is it that makes family? Is it blood or care?

Oddly, one of the book’s numerous strengths is that it raises many questions Copeland can’t answer but that provoke thought and debate. “The rise of consumer genomics poses questions about the emphasis we put on genetic identity and what we do when DNA test results come into conflict with the narratives we’ve long believed about ourselves,” she says. “How much of your sense of yourself should scientists and algorithms be allowed to dictate?” And further, “Who decides what story we get to tell?”

Legions of test takers will nod in recognition when Copeland acknowledges the fundamental pain many seekers experience. “Secrets, we are all discovering, have a propulsive power all their own, and time and complicity only make them more powerful.” She manages to look at the toxicity of secrets from all sides. “DNA testing has brought the past forward to the present, forcing us to grapple with decisions made long ago in different, often desperate, circumstances. If forces us to think about the people whose truths have been hushed up for decades—the teenager consigned to a home for unwed mothers, the medical student who contributed his sperm, never dreaming that sperm would become a person knocking on his inbox five decades later.”

Copeland has managed to unravel the enormous knot of a deeply complex subject—the “profound and disruptive power of DNA testing.” She’s broken it into comprehensible parts and parsed their meaning and import. “The Lost Family” is essential reading for everyone who has taken or is considering taking a DNA test, and it will be illuminating to anyone with a stake in genetic identity issues. But because Copeland’s analysis is so thorough and deeply thoughtful, and because it will humanize and contextualize genetic identity issues for those who haven’t yet been touched by them, the book should be read by everyone. No one is immune to the reach of DNA testing. Ultimately, everyone will be affected in one way or another by this phenomenon. The information contained in this excellent book will help readers make informed decisions about testing and, equally, once they’ve tested, will prepare them for the fallout when “the roulette wheel of some unexpected revelation” stops at their families.

Look for more reviews here, and return to the home page for more articles about genetic identity.

Facebook groups and virtual support groups can be lifesavers, but nothing beats face-to-face time with people who know how you feel and have been where you’ve been. That’s why Erin Cosentino and Cindy McQuay have begun organizing retreats for adoptees, late discovery adoptees, donor conceived (DC) people, and NPEs (not parent expected) at which participants can get to know each other and share their experiences in a relaxed setting while learning from experts about the issues that challenge them. It’s not therapy, but it may be equally healing, and undoubtedly more fun.

Since the day that Cosentino, 44, discovered at 42 that her father was not the man who raised her, her mantra has been “Nothing has changed, yet everything has changed.” McQuay, 56, has known her entire life she had been adopted. Both married with children and busy schedules, each devotes considerable time to advocating for people with concerns related to genetic identity and helping searchers look for biological family. And each runs a private Facebook group, Cosentino’s NPE Only: After the Discovery, and McQuay’s Adoptees Only: Found/Reunion The Next Chapter.

Among her advocacy efforts, McQuay, who describes herself as a jack of all trades, helps adoptees locate the forms necessary to obtain original birth certificates (OBCs). A strong voice for adoptee rights, she strives to enlighten non-adoptees about the often unrecognized harsh realities of adoption, helping them understand that “not all adoptions are rainbows and unicorns.” Countering the dominant narrative, she’s quick to point out that adoptees “were not chosen, we were just next in line.”

Cosentino and McQuay first encountered each other when they were among 30 participants at an afternoon meet-up in Philadelphia last March. “It was an awesome experience to be able to see and hug these people with whom we’d formed deep bonds over the Internet,” says Cosentino. “We loved that we were able to meet up with others, but felt that there simply wasn’t enough time to share with each other.” Further, she says, McQuay felt slightly out of place because she was the only adoptee in attendance and the agenda was geared more toward NPEs.

After the meeting, a group of attendees went out to dinner and Cosentino and McQuay began to talk about the possibility of creating a retreat. As a special educator, Cosentino says her go-to is always to teach, so planning a retreat where people affected by separation from biological family could gather and “learn and grow while healing” seemed like a great idea. Over the course of the dinner conversation, they’d decided to plan something longer and more inclusive, and, thus, says Cosentino, “the idea for the New Jersey Shore Round Table Retreat was born.”

They designed a program that would include all people facing identity loss and address their issues. It was important to McQuay, for example, to “make sure NPEs, LDAs, and DC people knew what adoptees have been living their entire lives”—how they’ve spent their lifetimes searching for familiarity in strangers’ faces, about the frustrations associated with the laws pertaining to OBCs, and the trauma and loss they’ve experienced.

Their inaugural retreat was held in Brigantine, New Jersey in October 2019 and was attended by 18 women and one man. “We initially and quite simply wanted more time together. We felt we wanted to provide a space where we could all—NPEs, DCs, adoptees, and LDAs—be together and share our experiences,” says Cosentino. The lone man attending felt fortunate to take part but wishes more men would take the opportunity to attend. According to McQuay, “Men may be hesitant to open up, but would be surprised to learn that the retreats are not women-specific. They contain activities that benefit everyone.

At the same time, they wanted to delve deeper into the trauma often experienced in the wake of the revelation of family secrets and so invited Susannah Spanton—a Reiki master and Bio-Energy practitioner as well as a trauma trainer at Lakeside Global Institute, which provides trauma-informed training—to speak about how the body responds and adapts to trauma. According to Cosentino, “Trauma changes a person, but we all respond differently to trauma. It’s a very individual experience. So we focused on asking thought-provoking questions and sharing meals, lots of laughs, and some tears as well. We just wanted to be around people who get it.” In addition, they broke up into smaller groups where they explored hard questions and also enjoyed time for meditation and reflection.Now they’re branching out and planning additional retreats—for starters, a spring 2020 gathering in Brigantine (with half the 30 spots already booked by previous attendees) and an autumn 2020 retreat, tentatively scheduled to take place in Pennsylvania’s Poconos, where participants can enjoy the mountains and the fall foliage. “We can’t help but think of the quote (from an unknown source)—‘Autumn shows us how beautiful it is to let things go,’—and it really is the perfect backdrop to heal, grow, and maybe not let go, but move forward,” says Cosentino. She and McQuay are open to the possibility of hosting retreats virtually anywhere if there’s a desire from people in other areas. Because Cosentino sits on the board of a cancer nonprofit organization for which she plans events in states remotely, it’s a seamless task for her.

The first gathering, says Cosentino, was their ‘guinea pig.’ “We learned from that first retreat what people liked and didn’t like, what they need, and even what they are not ready to experience. The second retreat will take a more therapeutic approach. “Our trauma specialist is returning, but we’ve enlisted the expertise of art and writing therapists as well—Elissa Arbeitman, MA ATR-BC and Chelsea Palermo, MFA—and a licensed social worker, Gina Daniel, DSW, LCSW, will be there as well to educate us on therapies that work for NPEs, adoptees, LDAs, and DC individuals.The most significant benefit to attendees, say McQuay and Cosentino, is togetherness. “We heal simply by being together in a safe place where we already know what the others are experiencing. But of equal importance and value is the opportunity to have trained professionals guide us through different therapies and approaches and provide strategies and opportunities to feel whole,” says Cosentino.

“The best thing was knowing you are not alone and being able to share and talk about your own personal story without judgment or someone saying ‘don’t worry, nothing has changed,’” says one attendee, Da Rhonda Roberts, a 56-year NPE and a human resources coordinator from Cherry Hill, New Jersey. “For me it changed a whole hell of a lot.” The trauma lecture was also informative and helpful for her not only for its relevance to genetic identity, but also because she’s a survivor of domestic violence. Many people with genetic identity loss have experienced other types of trauma, which may be amplified by the distress they experience after making difficult family discoveries, so strategies for addressing trauma are essential.

Not feeling alone was also a key takeaway for Heather Resto. A 39-year-old NPE from Connecticut whose older brother is also an NPE, she also credits the retreat with reassuring her that “it’s okay to feel everything I feel as a result of this discovery—anger, grief, shock, sadness, and joy connecting with new family.” The lecture on trauma, she says, validated her emotions. “There was something cathartic about sitting in a room with 17 other people going through the same thing. While our stories are all different and we’re all at different points in our journey to discovery, we are all connected as NPEs. We all get ‘it,’ while many people in our daily lives just don’t see how a discovery like this is traumatic and life changing,” Resto says.Learn more about the retreats at Hiraeth Hope & Healing, and join pertinent communities on Facebook: Cosentino’s group for NPEs, McQuay’s group for adoptees, and Severance’s group for anyone experiencing genetic identity issues.

Check back soon for more on how to start a retreat or symposium in your area.

By B.K. JacksonAuthor Dani Shapiro has explored family secrets from every angle in an exceptional decades-long writing career that until now yielded five novels and four memoirs. Revisiting those works, it’s tempting to believe everything she’s experienced and written has been prelude to her 10th book, the bestselling “Inheritance: A Memoir of Genealogy, Paternity, and Love.” In an earlier memoir, for example, “Still Writing: The Perils and Pleasures of a Creative Life,” she describes herself in childhood as having been strangely aware unknowns were waiting to be discovered. She didn’t know what she didn’t know, but she was certain there were secrets. Already, she had an untamed curiosity, an urgent need to shed light on those unknowns, and an intuitive understanding of the ways of a writer. She eavesdropped, snooped, and struggled to get to the bottom of things. “I didn’t know that this spying was the beginning of a literary education,” she writes. “That the need to know, to discover, to peel away the surface was a training ground for who and what I would grow up to become.”

But when she grew up, one thing she never felt a need to get to the bottom of was her story of origin. Despite the blond hair and striking blue eyes that almost daily brought the same comment — “You don’t look Jewish” — she had no doubt about where she came from and who her people were. She took enormous pride in being the progeny of Orthodox Jewish immigrants from Eastern Europe, revered leaders in their communities. “They are the tangled roots — thick, rich, and dark — that bind me to the turning earth.” She was grounded by her Orthodox heritage, its traditions touchstones in her life that tethered her to her father, Paul, whom she adored and whose sadness captivated her. She felt no such tenderness toward her mother, Irene, with whom she had a tenuous relationship. As a child, she says, “I’d had the fantasy — a form of hope, now a staggering irony — that she wasn’t actually my mother.” She told their stories in fiction and in memoir, examining the family as one might a jewel, holding it to the light and observing both its beauty and its flaws.

Although Shapiro had no curiosity about her lineage, when her husband, Michael, who wanted to learn more about his own ancestry, ordered a test for each of them, she went along gamely. But she absorbed its results in stages, in a haze of denial. She was stunned to learn she was only 52% European Jewish and mystified by a match to a first cousin she knew nothing about. Soon after, Michael bounded up the stairs one evening with his laptop in his hands — the rhythm of his steps signaling something urgent — announcing that her half sister Susie, her father’s older daughter, had sent the results of her DNA test, the import of which he’d already gleaned. Shapiro and Susie shared no DNA. This quickly led to the unthinkable yet indisputable conclusion that Shapiro was not the child of the father she adored — the man who died many years earlier after having been in a horrific car crash, whose influence and presence in her life, even now, she cherishes every day.

Readers who’ve experienced similarly staggering DNA surprises can guess exactly what came next — a call to AncestryDNA — because surely there must have been a mistake. The vials must have been switched. But of course they weren’t. As Shapiro acknowledges, “Millions of people have had their DNA tested by Ancestry, and no such mistake has ever been made.” As denial faded, questions bloomed: “If my father wasn’t my father, who was my father? If my father wasn’t my father, who was I?”

“Still Writing” was written long before Shapiro’s life was upended by this shocking revelation. Rereading it now, I’m struck by her prescience. Her thoughts point like arrows toward a future she couldn’t have guessed would come to pass. In the opening pages she writes, “Secrets floated through our home like dust motes in the air. Every word spoken by my parents contained within it a hard kernel of what wasn’t being said.” Among the things that weren’t being said were that her parents had had difficulty conceiving and sought treatment at a sketchy fertility clinic in the shadow of the University of Pennsylvania. Its director, Dr. Edmond Farris, who practiced medicine without a license, had devised a new technique for detecting ovulation that allowed men to provide sperm for artificial insemination at the ideal window of opportunity. The clinic, as did others of that era, mixed donor sperm with the husbands’ sperm to boost the chances of conception while at the same time give the couples reason to believe it was possible the husbands’ sperm prevailed to fertilize the eggs.

The technique — aptly and understatedly — was called confused artificial insemination. The truth was easy to disguise. In those years, no one could have imagined a future in which anyone could spit in a tube, pull back the curtain on such deception, and nullify any promise of anonymity that had been given the sperm donors.

Many who’ve used DNA results to find family will be stunned by the velocity of Shapiro’s success. Within 36 hours, with the help of her journalist husband and a genealogy-savvy acquaintance, she identified her biological father, who’d been a medical student at the University of Pennsylvania. But that discovery may never have happened had Shapiro not dredged up a shard of memory — a vaguely recollected offhand comment her mother had dropped like a grenade many years earlier about a fertility clinic in Philadelphia. What Shapiro does with that information kickstarts an inquiry into the facts of her origins, the ethics of donor conception, the potential consequences of revealing her secret, and — most compelling — the nature of genetic inheritance.

Don’t worry. There’s no spoiler alert needed. The facts aren’t what drives the narrative. Rather, it’s Shapiro’s tender dissection of the fallout of those facts that make “Inheritance” a page turner. As she wonders whether she’ll ever meet her biological father, she ruminates about what actually transpired, what her parents knew, and what it meant to them. And she reaches out to elderly relatives, doctors, religious leaders, and experts in donor conception to answer the question that tortures her: had her parents lied to her or had they themselves been deceived? She withstands an avalanche of grief and emerges to dig deep into the bigger questions. Who is she now? How will it change her relationships? What are the ethical issues associated with anonymity in donor conception? What is it that makes us who we are? What does it mean to forge a new identity and craft a new personal narrative in midlife? How do we live with uncertainty? And, above all, what does it mean to be a father?

An extraordinarily skilled and graceful writer, Shapiro performs a sleight of hand. She makes the reader feel as if she’s pulled up a chair and said, “Let me tell you what happened to me.” The story unfolds as naturally as a conversation between friends over many cups of coffee. But “Inheritance” is no simple recitation of facts. It’s a careful construction, equal parts brilliant detective story and philosophical inquiry.

One doesn’t need to have had a similar shock to be moved to tears by Shapiro’s sorrow and distress. Those who have traveled a similar path, however, may read breathlessly, with a lump in their throats. They may feel, as I did, that Shapiro eavesdropped on their conversations, got inside their skin, echoed their words, channeled their every emotion. “Inheritance” will linger in the minds of all who have yearned to belong and resonate with anyone who’s struggled to answer the question, “Who am I?”

By B.K. JacksonMost of the losses we experience in life require little explanation and are universally recognized and understood, such as the death of our loved ones. They were among us — and then they weren’t. We may have witnessed their transition from life to death, from breathing to not breathing. We may have seen their bodies lowered to the ground and have attended ceremonies acknowledging the gravity of our losses. We miss the dead, mourn for them, and are comforted by others who understand and may grieve with us. Over time, the sadness over their absence, while it may never evaporate, dissipates.

But some loss is less clear, even more distressing, and may last forever. Ambiguous loss is the traumatic loss of a person, a relationship, or even the desire for a relationship, for which there is no possibility of closure. The term may also pertain to a problem that can’t be solved or a situation that has no resolution. Pauline Boss, a family therapist, educator, and researcher who coined the term ambiguous loss in the late 1970s, describes it as a type “that has no validation and no body to bury. It’s a situation that leads to disenfranchised grief — grief that society doesn’t know what to do with or discriminates against.”

There are two types of ambiguous loss. One arises in situations where there is a physical presence but a lack of psychological presence, for example, when a loved one has dementia or is emotionally unavailable. The other type, conversely, emerges when there’s a psychological presence but a physical absence, such as when a death is presumed to have occurred but there’s no body, as was the case for many of the individuals with whom Boss has worked — loved ones of pilots missing in action in Vietnam, victims of 9/11 who were never identified, and individuals presumed dead after the catastrophic tsunami that struck Japan in 2011. The ambiguity is caused by a lack of information about the loss.

It’s this second type of ambiguous loss that’s commonly experienced by individuals who’ve been stripped of information about their genetic identities, whether as a result of adoption, donor conception, or other circumstances of misattributed parentage.

According to JaeRan Kim, PhD, MSW, assistant professor of social work at the University of Washington Tacoma, also falling under the umbrella of ambiguous losses are “any circumstances where what you think you understand about a relationship turns out to be unclear, misleading, or unknown.”  Adoptees who find out later in life they were adopted, for example, “often feel a sense of betrayal by their parents and may question everything about their relationship,” she says. “They may also experience the loss and uncertainty about their birth/first parents — who they were and what became of them.” The same is true for NPEs (non-parental events or not parent expected) and donor conceived people. Ambiguous loss, Kim adds, is also about the inability or failure of others to acknowledge that there’s sadness or grief over the loss.

More important to consider for adoptees, says Kim, “is whether they have specific information about the adoption circumstances, the reasons for their relinquishment, and the knowledge that their birth/first families are okay, and if there’s been some sort of sense of peace about that loss. It’s also necessary to consider if the adoptive parents were open about including the birth/first parents and families in their lives, even if only in symbolic ways.” Ambiguous loss, she says, “is more difficult to manage if adoptees feel it is not safe to voice their thoughts and feelings about wanting to know more about the circumstances that led to their adoptions and if they are shamed or shut down if they question or mourn the loss of their birthparents.”

For adoptees and NPEs, the lack of information about their origins creates ambiguity when they can’t identify a birth parent, can’t locate a biological family member they have identified, or learn that a biological family member they’ve never met has died, shattering the dream that one day they will connect. In each case, there’s a loss of the promise of a relationship that doesn’t yet — and may never — exist. It’s heartbreaking in these cases of lack of information about genetic identity, Boss says, because there are multiple layers of loss and ambiguity. Individuals may feel shattered by the death of birthparents they’ve never met, feelings further complicated when they’ve been rejected or shamed by their birth or social families.

These losses, Boss writes in her 2000 book, “Ambiguous Loss: Learning to Live with Unresolved Grief,” are “always stressful and often tormenting.” They’re the most devastating and traumatizing of losses because sufferers must live with ambiguity that might stay with them throughout their lives. She illustrates her point, quoting from an old English nursery rhyme, with an example certain to resonate with anyone who grieves an absent parent:

As I was walking up the stair,

I met a man who was not there

He was not there again today

Oh, how I wish he’d go away

While some people have higher thresholds of tolerance than others for ambiguity, most people find it deeply disturbing and stress-inducing. It’s difficult to move forward when you don’t know for certain if the loss is permanent and when there are no rituals for mourning the loss. Those who’ve never experienced an ambiguous loss may not understand the depth of the pain or the level of stress it arouses.

Boss observes that among the many potential consequences people suffering ambiguous losses may experience are:

• a freezing of the grief process
• a sense of being stuck in limbo
• an inability to make sense of the situation or to make decisions
• depression, anxiety, and substance abuse
• feeling immobilized
• exhaustion, hopelessness, and helplessness.

These symptoms are similar to those of complicated grief but are the result of ambiguity, not death.If you’re struggling with an ambiguous loss, you may consider seeing a therapist. But, according to Boss, that’s not always helpful. Therapists, she explains — particularly psychologists and psychiatrists — often focus on inner psychiatric issues, but in the case of ambiguous loss, there are none. She characterizes ambiguous loss as a stress-based problem and uses a non-medical approach to distinguish it from a pathology. “It’s not like you have a mental illness such as schizophrenia or bipolar disorder. You don’t have to adjust to a disease that’s inside you,” she explains. “The pathology lies in the situation, not in your psyche. If you experience distress over an ambiguous loss, there’s nothing wrong with you, but there is something wrong with what happened to you,” she says. “The problem is that you’ve been dealt a card that was not your fault, and now you have to try to figure it out, but there may be no answer.”

That’s not to say that a therapist isn’t ever necessary or can’t help. If you need a high degree of control in your life, you might spend all your time digging and digging for answers and not living your life, Boss says. A therapist can help you change course, but you must choose one who understands that the problem lies in the context of the situation, not in the inner workings of your mind. Perhaps surprisingly, grief therapists might not be the best choice, because they’re trained to deal with loved ones who are dead — with the certainty of death. But you may not have that. Further, unless they’ve specifically been trained in this particular kind of loss, Boss says, therapists may try to put a timeline on your grief, but with ambiguous loss, “there is no timeline. It’s a forever thing.” Look for a family therapist or a social worker, she advises, because they’re trained to look systemically at your environment, at the context, and at what happened to you.

And don’t look for comfort in knowledge of the five stages of grief, Boss adds. It’s a concept that’s been widely misunderstood, taken out of its original context, and generally accepted even though there’s no evidence that it has merit. Society, and especially American society, loves the idea of these stages, she says, because they promise a way to get over it, to gain what she calls the myth of closure. “It’s an ugly word, closure. I don’t believe in it. It doesn’t exist, and why should it? It’s not needed.” The idea that we need to get over loss and move on is cruel, she says, because we now know that we need to learn to live with grief, even when there is a death.If your loss remains in your thoughts, that’s understandable, but it shouldn’t control your mind, Boss says, because then it becomes an obsession.

In her 2006 book, “Loss, Trauma, and Resilience: Therapeutic Work with Ambiguous Loss,” she lays out guidelines therapists can use to help individuals suffering ambiguous losses. But there are a number of things you can do on your own. Not that there’s a simple fix. Or even any fix. The solution is a matter of increasing your tolerance for, and comfort with, unanswered questions.

Once you acknowledge the losses and recognize they’re ambiguous, there are two key goals: learning to accept the ambiguities instead of struggling against them, and mitigating the stress the losses cause. The challenge is not to get over ambiguous loss, because that’s impossible, but to get used to it, to increase your resilience and learn to be able to live without knowing and move forward despite an ongoing mystery.

Accepting ambiguity, Boss admits, isn’t easy. “We live in a society that’s mastery-oriented. We want the answers, otherwise it’s as if we’ve failed. We have to fight that societal pressure for certainty, for answer to all questions.” She likes the idea that we’re a can-do society, but there are some questions that have no answers and may never have answers.

The way forward isn’t controlling and overcoming, it’s surrendering. “It’s sort of a mind game to live with unanswered questions, but it helps to lower the stress or anxiety associated with the ambiguity,” Boss says. One method she recommends is meditation. “It’s always good, but it’s especially helpful when you’re faced with questions you can’t find an answer to. It helps you lower the need to control and find answers.” Searching for certainty has a lot to do with a need for control and mastery, which often serves us well, but when there are no answers it’s self-defeating. “I think we have to consciously, mindfully, say, ‘I will not be able to find the answer to this,’ or maybe, ‘I found the answer and I don’t like it, but I have to be able to make that less important so it doesn’t control my life.’”

Part of the solution is deciding to accept the ambiguity using both/and thinking, which Boss describes as holding two opposing ideas in one’s mind at the same time. It’s a way of acknowledging that there may be more than one way to look at something, and though the views may be contradictory, they are both true. A woman who was abandoned by her mother, for example, might say, “I both will never know my mother, and I have loving mother figures in my life.” Another example, Boss says, is, “I am both sad about my lost hopes and dreams, and happy about some new ones.”

In large part it’s a matter of “learning to live in the now, of acknowledging and recognizing for yourself that there’s a part of your past that you’ll never claim, and although that’s not okay, it’s something you can live with,” according to Kathleen R. Gilbert, PhD, professor emerita in the Department of Applied Health Science, Indiana University School of Public Health-Bloomington and an Association for Death Education and Counseling Fellow in Thanatology (FT).

If you’re in the grip of an ambiguous loss, these coping strategies may sound either far too difficult or much too simplistic, too paradoxical. It might be hard to hear that the solution to ambiguity is acceptance. But, as the experts indicate, there’s no way to create certainty in an inherently and invariably ambiguous situation. Continuing to obsessively question and wonder about things that can’t be known, says Gilbert, “trying and trying to find answers when there are none is like a fool’s errand.” It’s frustrating to hear, she admits, that the answer may be “mindfulness, centering, accepting, and giving yourself permission to be okay in this present moment with where you are and what you know.”  It may make you want to throw up your hands and scream, she says, but the only way to ease the suffering is to learn to react differently.

It’s also helpful to find creative outlets, both to reduce stress and help make meaning when meaning is difficult to grasp. Boss recommends arts-related activities and storytelling. Journaling and creative writing are extremely helpful, she says, as are painting and physical activity. “Movement is exceedingly important to work out stress. It’s a Western idea that you need to sit in a chair and face a therapist. It’s not always the best thing to do.” Sitting in a therapist’s office, for people who have been traumatized, may be less useful than if the therapist would go for a walk with them. You can explore these activities on your own or look for an arts, music, or movement therapist to guide you.

These activities, says Gilbert, may be among the ways you can make meaning when there seems to be no meaning, to make sense when things don’t seem to make sense. It’s about coming up with an explanation you can live with. “It’s not about a broader, deeper, more philosophical meaning — that’s what a lot of people think when they use the term meaning.” Instead, she says, “You’re looking for something that can help calm you and let you live your life in the world with the information you have. The question is, how can you reframe everything in a way that makes sense to you and that lets you go forward?”

Talking to other people who’ve had a similar experience is helpful as well, says Gilbert, “not necessarily to look for advice or direction, but just to toss around ideas and hear what other people have done, how they’ve made sense of things, and how they’ve functioned.” And in return, being able to help others is another way of making meaning.

Grieving, Gilbert concludes, “is really an external expression of an internal process of trying to get to be where you can live with the reality you’re in now.” When you boil it down, Boss agrees, adapting to ambiguous losses comes down to this: “We can’t always have what we want, and we can learn to live with that. Hopefully you get 90% of what you want, and I think we can adjust our coping style and build our resistance to live with even that 10% we can’t have.”

On an October day in 2016, Adrian Jones set out on what was for him a common pastime — a strenuous mountain bike ride with friends. Midway up a steep grade, Jones — who by all appearances was fit and healthy — began experiencing alarming symptoms including extreme fatigue, nausea, lightheadedness, and, ultimately, chest pain. His friends rushed him to Marin General Hospital, oddly the same place where the adoptee had been born almost 47 years earlier. There, he was diagnosed as having had a “widowmaker” heart attack, his left anterior descending artery having been 100% occluded.

Grateful to have survived this typically lethal heart condition, Jones heeded a voice he heard when he was in the ICU. It said, “Find your birth parents!” With the help of a genetic genealogist, he did, and he discovered that heart disease runs — gallops — in his family, having killed an uncle at age 52 and both of his maternal grandparents, his grandmother at 65 and his grandfather at 71.

Jones’ story illustrates why having a family medical history is essential. Had he known what he now knows, he would have been able to undergo appropriate screening and might have been able to detect a problem before it had the potential to become lethal.

Although many of us are blocked at every turn when trying to gather information about our inherited health risks, continuing to do everything possible to obtain such information — including advocating for the right to have it — is crucial. But until you’re able to know more about the potential issues that may be a part of your family’s legacy, DNA testing may be the only path you can take to improve your awareness of your genetic risks and minimize them.For most humans, the bulk of our DNA is sequenced similarly. A small percent of our DNA — roughly 0.5% — differs. Within that 0.5% are the genes that influence our risks for various health conditions and diseases. Though knowledge of DNA sequencing and the human genome in general has advanced tremendously, making it possible to detect vulnerability to many heritable diseases, there remains much that’s unknown. Thus, while DNA testing can help indicate possible health risks, at worst it’s imprecise and can be misinterpreted and at best it doesn’t provide the full picture. Understand going into it that it won’t give you a road map to your future health, nor will it diagnose disease. But it may permit early detection of diseases and in some cases can be a lifesaver.Although there are now many companies that offer direct-to-consumer (DTC) DNA tests, the best known of these, 23andMe, was the first to receive FDA approval to market tests providing information about genes influencing health and disease. Recently, another of the leading genealogical testing companies, MyHeritage, has begun offering a health test. The tests look for genetic variants called single nucleotide polymorphisms (SNPs) that are associated with risk for developing a number of diseases, including Parkinson’s disease, age-related macular degeneration, early-onset Alzheimer’s disease, and breast cancer. They also show whether you have a genetic variant (once known as a mutation) that may contribute to diseases you can pass on to your children, such as sickle cell anemia or cystic fibrosis. If you have one copy of a gene variant associated with a condition, you are a carrier. A child whose parents both have that variant will develop that genetic disorder.

But these tests don’t tell the whole story and don’t examine all genes that influence disease risk.

Before selecting one of these tests, especially when considering one from a lesser-known business, research the company’s track record, look at the credentials of the team, and ensure that you’ll have access to representatives who will answer all your questions. Look for guidelines about choosing a DTC test from the National Institutes of Health’s National Library of Medicine.If you’ve taken an autosomal DNA test for genealogical purposes, you can download your raw DNA file, which contains a sampling of your DNA. Then you can download that information to any of a number of services, such as Promethease, LiveWello, or Sequencing, that will use that raw data to generate health reports, in many cases involving many more conditions and risks than those addressed by the major DTC tests and in far greater detail. The results, however, can be both bewildering and anxiety-provoking. I’ve uploaded my DNA to each of these companies and, despite having been a health journalist for many years, I find the reports both difficult to understand and somewhat alarming. Even if you have a science background as well as the time and motivation to learn to how to interpret the findings, you may believe you understand the results, but it’s likely that without the assistance of a genetic counselor you may misinterpret the findings, and the consequences can be serious.

In addition to these third-party tools, new programs and apps are appearing almost daily that purport to tell you how to best eat, exercise, sleep, and even age based on your DNA. These may offer results pertaining to such traits as metabolism, muscle strength, sleep, and nutrient absorption. They may be interesting and entertaining, but their science base is questionable and they’re of little use if you’re looking to fill in the gaps of your knowledge about health risks. And as with everything, it’s a question of buyer beware. It’s a caveat that’s especially important when these companies also aim to sell you supplements, programs, or other products they claim are individualized to your specific needs as indicated by your genes. The evidence for the effectiveness of the DNA analysis and of the associated programs and products in many if not most cases is lacking.All of these DTC approaches have benefits and limitations, the former being chiefly that they’re simple, noninvasive tests that may allow you to become aware of health risks before a condition develops and to take preventive measures or they may point to existing conditions and lead you toward prompt treatment. They generally are less expensive than medical-grade tests and typically do not require recommendation by a physician. However, the gap is closing, with some newer, more affordable medical-grade options, such as tests by Invitae, Color Genomics, and some of the Helix tests, says Kirkpatrick.

Sadly, the list of the limitations of DTC testing is much longer:

Genes are only part of the picture. Just because a condition may run in your family doesn’t mean it’s truly all in your genes. Your genetic inheritance is just one component of disease risk. Also influencing your risk are your environment, your lifestyle choices, and the interplay of multiple genes. Moreover, although your genes don’t change with time, the knowledge about them and available testing options do. “Most genetic variants that are associated with disease are actually not predictive, meaning we can test for a condition but it doesn’t mean that condition is going to develop because there’s a lot more complexity to disease development,” says Kirkpatrick. A condition such as type 2 diabetes, for example, “takes more than 1,000 different markers and environmental exposures to develop, so it’s not just a one-gene, one-condition situation, and most diseases involve multiple genetic variants in multiple different areas. Individually, each of the markers may only have a small impact on the risk, but all together they can influence a person’s risk to develop that condition,” she explains.

They may provide false reassurance and arouse unnecessary worry. Consumers typically lack adequate information to allow them to interpret the results accurately and may believe, incorrectly, that because a test doesn’t flag any variants for a particular disease, they have no risk for that disease. The opposite is also true. They may see one or more variants flagged for a particular condition and assume it means they will develop the disease, when in fact the results do not, and cannot, indicate that. Genetic testing may reveal information that might be alarming, confusing, or that you simply might rather not know. If your test reveals a gene that contributes to a deadly cancer, for example, without additional information and context, you might experience a great deal of anxiety. As noted earlier, that anxiety might be misplaced, since that gene alone is no real indication of your risk and because false positives are not uncommon.

They support confirmation bias. This is when a test appears to confirm something one is expecting or hoping for. It happens frequently, particularly with reports from third-party assessments, says Kirkpatrick. Almost all of those reports, for example, she says, will flag some gene entries for breast cancer, colon cancer, and dementia. “Everyone has variants in their reports for all of these hundreds of conditions, and if they have them in their family histories, they’re going to think these tests have identified the genetic reason, but it’s quite possible that the genetic reason in that family wasn’t even on the test.”

There’s a risk of discrimination. While the Genetic Information Nondiscrimination Act of 2008 prevents employers and health insurers from discrimination based on DNA findings, that protection is not automatically provided when it comes to life and long-term disability insurance. The Genetic Non-Discrimination Act similarly protects Canadians.

The tests are not comprehensive. Perhaps the most significant limitation of most DTC tests is that they only look for certain variants within the genome — a method called genotyping. Kirkpatrick describes it as being “like playing a game of hopscotch down the DNA, where it looks at spots here and there but isn’t really complete.” It might pick out a variant that influences your risk for a condition, but there may be thousands of others it doesn’t look at. The more comprehensive approach used in tests given by healthcare providers is known as sequencing, which looks at longer stretches of DNA or even the entire genome. This difference may be of particular concern when it comes to certain conditions such as breast cancer. For example, some DTC tests look at only a few of the thousands of variants in the two breast cancer genes called BRCA1 and BRCA2, variants that tend to be found in people of Eastern European descent.

Finding these variants is important, because both women and men with one of these variants have a higher risk of developing certain cancers. The danger is that if these DNA tests do not reveal the presence of one of these other variants, consumers might think they’re in the clear and not only may pass on further genetic testing but also may slack off on routine breast and prostate care.

Even if a woman doesn’t have one of the variants flagged by these tests, it doesn’t mean she won’t get breast cancer. She still might have one of the many variants not tested for, variants that might put her at increased risk for breast and ovarian cancers. Furthermore, genes are not the only factors that influence whether she might develop the disease. 23andMe explains these pitfalls to consumers and encourages women — and in fact all customers — to consult with a genetic counselor before testing, discuss findings with their physicians, and consider further genetic testing.

“I’ve seen people falsely reassured when they really aren’t understanding that the raw data files are not looking at the entire BRCA1 gene, for example.” They don’t realize they could still have a genetic variation that’s not included in that raw file, Kirkpatrick explains. Furthermore, she says, the raw data analyzed is different from one company to another, and even individual companies have more than one version of their test, so the information that’s extracted for download and then uploaded can vary and have different markers.

Furthermore, tests don’t yet exist for all conditions that can be genetic in origin or for all genes pertaining to a particular disease.Because of these limitations, it’s wise for everyone taking DTC tests to discuss their findings with a certified genetic counselor — an expert with deep training in genetics and counseling — before dismissing, worrying about, or acting on results. And in cases in which a test indicates a risk for a disease, it’s necessary to validate those findings through medical-grade testing. You might be tempted to bring your results to your next medical appointment, but in many cases primary care physicians aren’t aware of all the tests and aren’t necessarily able or willing to evaluate them.

Kirkpatrick advises everyone who gets results from third-party sources to work with a genetic counselor who specializes in DTC genetics. “If you’ve found a particular variant you’re anxious about, we always recommend doing confirmation testing — repeating the test, but in a medical-grade laboratory setting.” About half the time, she says, the finding will not be confirmed.

It’s advice that even the leading DTC testing companies give. 23andMe, for example, advises all customers to seek such genetic counseling before taking an at-home DNA test and to follow up with medical-grade testing when findings indicate a risk. If costs are an issue, first talk with your doctor and your insurance company to see if you may be covered.

To find a genetic counselor, ask your physician or visit the National Society of Genetic Counselors, which has a directory of more than 3,300 practitioners.While DTC tests may give you some information about your health risks, they are less complete and in many cases less reliable than those you’d get from medical-grade tests chosen with the help of a genetic counselor. Unfortunately, many consumers aren’t aware there’s another type of DNA testing available to help assess their risks. Unlike most DTC DNA tests, medical-grade tests must be recommended or ordered by a healthcare provider and in many instances are covered by insurance. For individuals without a family medical history who suffer from mysterious symptoms or have developed health conditions, such medical-grade diagnostic tests can provide valuable information that will help physicians explore additional testing and target treatment methods.

For those who take medications for certain conditions, pharmacogenomic testing (PGx) examines genes that contribute to the way you will respond to a particular medication and whether you’re likely to have adverse reactions. This is helpful, for example, to guide dosages for people taking warfarin to reduce risk of stroke or to predict adverse effects in those taking statins to lower cholesterol.

Another type of testing, proactive screening, as the name suggests, looks for variants in genes known to be linked to diseases about which individuals can be proactive — those that can be influenced by behaviors or treated when detected early. This newer type of testing, which is largely not covered by medical insurance, is not yet widely used. “Most people don’t know how to navigate the system to access the testing, and the tests haven’t been around long enough for there to be widespread understanding of their value,” says Kirkpatrick.A potential game-changer in testing is a new program called My Gene Counsel, which, according to Kirkpatrick, is trying to help people access reliable genetic information and receive confirmation testing on a mass scale. According to the company’s website, its team of “genetic counselors, scientists, and patient advocates have created streams of information to answer the questions you and your doctor have about your genetic tests results and how to use them.” The company links your results to those streams of information and shares reports with you and your healthcare provider, updating you as new information emerges and recommendations change.

According to the company’s president and CEO, Ellen Matloff, the program “allows people who have had DTC testing and have a personal or family history of cancer to get information about their health results and do verification testing in a medical-grade laboratory, if needed.” It’s recently expanded, she adds, to include people who either have a personal and/or family history of cancer and have not had DTC testing, or who have no such history but who have had a cancer-related finding via DTC testing. The program includes genetic counseling by phone by a certified genetic counselor. This program is also innovative because as the science of genetic testing evolves and results shift, it will keep consumers up to date about what these changes mean to their health.

Another company, Invitae, says Kirkpatrick, is “helping push medical-grade testing into the DTC sphere. According to the company, “The new service allows consumers to initiate and order tests themselves, and then be paired with a trained, independent clinician who reviews health history and determines the medical appropriateness of their test. Once results are available, the service provides support on next steps, including genetic counseling as appropriate, and also makes it easy for consumers to share their results directly with their personal physician.” This approach is similar to MyHeritage’s decision to include healthcare providers in ordering and helping return results regarding medical information to customers, says Kirkpatrick.Genetic testing, when results are interpreted correctly, may be a boon to individuals who don’t know who their biological families are and who, thus, are in the dark about their health risks. However, it gives only a partial picture of the risks. Melanoma, Kirkpatrick explains, is an example of a condition for which family medical history is as important, if not more important, than the genetic testing. There are several types of melanoma, she explains, some of which run more strongly in families than others, but testing hasn’t yet been developed for all cases of familial melanoma. “So if you have a family history of melanoma, it’s important to know that so you can have annual skin checks and pay more attention to any concerning skin findings, not putting it off if something develops.”

Family medical history matters, and Kirkpatrick encourages everyone to take all steps possible to learn about it. Adoptees, for example, can attempt to gain non-identifying information from the agencies or states responsible for their adoptions. And those who were adopted in the minority of states that allow access to original birth certificates can use the information those certificates contain to try to track down their biological parents. Donor conceived individuals who don’t have access to family medical history and NPEs (non-parental events or not parent expected) who also lack information may have no means other than DNA testing for searching for their biological families. Kirkpatrick offers step-by-step strategies for using DNA to find family along with a thorough discussion of medical DNA testing in her new book, “The DNA Guide for Adoptees: How to Use Genealogy and Genetics to Uncover Your Roots, Connect With Your Biological Family, and Better Understand Your Medical History.” The tips she and coauthor Shannon Combs-Bennett offer, although targeted to adoptees, will be useful as well to help donor conceived individuals and other NPEs find family.