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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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.
• 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 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…

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

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By Kara Rubinstein DeyerinUsually, when we think about people opening a Pandora’s box by taking a direct-to-consumer DNA test, we’re thinking about NPEs (not parent expected)—people who learn through such a test that their parent(s) is not genetically related to them. But now donor-conceived (DC) people are wondering if when they test they’re opening a different sort of Pandora’s box.

The decision in a legal case called Teuscher vs NW Cryobank in January 2020 caused some members of the DC community to pause before spitting into that little vial. If you’re considering a test for your DC child (under the age of 18), it’s important for you to know the ruling should not affect your decision.

First, let’s talk about terms. NPE is used here to broadly to include anyone who learns their parent(s) is not their genetic parent(s). This can be due to donor-conception, adoption, a tryst, or an assault. The term DC is used here because it’s the most widely used, even though the term “donor” conceived is very problematic. Most DC people were not conceived by a donation. Assisted reproduction is an industry. People were paid for their sperm or eggs. A better term hasn’t emerged yet. “Donor” disguises the complex issues that arise from creating a human in this fashion. Maybe “dealer conceived” is better if we try to stick with the DC initials. But I digress.

A short overview of the facts of the Teuscher case: Danielle Teuscher gave birth to a daughter after conceiving with the use of sperm (Donor #2744) purchased from NW Cryobank. She specifically requested an open ID donor so her child at 18 years old could know who her genetic father was. When her daughter was four, Teuscher purchased a direct-to-consumer DNA test with 23andMe to learn about her daughter’s genetic health factors as well as her ethnicity. While men who sell their sperm to fertility clinics are asked questions regarding their genetics (health and ethnicity), there are plenty of examples of misinformation or omission of information. In today’s legal climate, there are no consequences for such actions. As a mother, Teuscher should be allowed to have access to all of her daughter’s medical information to make informed decisions about her daughter’s health.

When the results arrived, her daughter matched with a close relative, likely a grandmother, who indicated she was open to contact by her matches. When Teuscher reached out to the possible grandmother, the match responded that she was unaware of Teuscher’s daughter’s existence and requested no further contact. Teuscher did not contact the grandmother again.

Shortly thereafter, as reported here previously, Teuscher received a “cease-and-desist” letter from NW Cryobank. The company demanded she stop reaching out to the donor and his family, as this was in violation of her contract. To add insult to injury, it also informed her she would no longer have access to its sibling registry and the other vials of sperm she’d purchased for future use. NW Cryobank seized Teuscher’s stored sperm because it believed she had violated the terms of the contract by connecting with Donor #2744’s family and, therefore, the remaining terms of the contract were void. Teuscher sued NW Cryobank to ensure Donor #2744 remained classified as an Open ID, since that was the term under which she purchased that specific sperm. She also wanted to regain access to the stored sperm, to Donor’s #2744 medical updates, and to the sibling registry. This case was brought in Spokane, Washington in Federal Court because that’s where NW Cryobank is physically located.

On January 31, 2020, Judge Thomas Rice ruled on the case. He dismissed Teuscher’s claims for emotional distress and violation of the Washington Consumer Protection Act for changing Donor #2744’s status after use of his sperm. However, the judge did not rule on claims for violations of the contract due to the seizure of the sperm Teuscher purchased for future use as well as all claims for wrongdoings against her daughter. This leaves the case open for Teuscher to argue for her daughter’s rights under the Consumer Protection Act and against what essentially is the seizure of her property. This case still is in the beginning stage and has many rulings to come. Once the judge has ruled on all claims made by Teuscher and her daughter, Teuscher may decide whether to appeal any of the rulings.

An appeal of the Consumer Protection Act ruling would benefit the DC community since NW Cryobank acted outside the scope of the contract by adding a penalty—the seizure of the stored sperm—that was not specifically outlined in the agreement. Leaving the verdict as is may embolden fertility clinics to add additional penalties for any similar breaches in the future.

Our legal system in the US is a common law system and, therefore, relies on court precedent in future decisions. When a person brings an action for breach of contract because one side added a penalty that was not enumerated in the contract, the judge will rely on previous judicial rulings with similar facts. Each side will cite prior cases to bolster its argument on why it should win. Both sides will also try and differentiate their cases from prior cases where the ruling does not support their arguments.

While there are many ways to differentiate this verdict, going to court is expensive. If Teuscher appeals her case and wins, this would let fertility clinics know they must remain strictly within the terms of the contract. In addition, NW Cryobank changed the donor’s designation after the contract was signed. If a seller in any other type of business acted in such a manner, it would be considered an unfair business practice.

So why did the judge’s ruling lead people to wonder whether DC children younger than 18 could still legally take a direct-to-consumer DNA test? Many are afraid of repercussions from the fertility clinic if they purchase tests for their DC children. The heart of the ruling is the judge’s discussion of whether Teuscher’s contract was unconscionable. A contract is unconscionable if it is so one-sided that one party has no real bargaining power or if some part of the contract is so unjust that it shocks the sensibilities of the court and society. Right to Know believes a contract such as that offered Teuscher is unconscionable.

Here’s what the judge had to say.

First, consider the bargaining power side of the discussion. The judge indicated that while Teuscher may have lacked bargaining power, the contract was simple, she had time to review it, she didn’t have to purchase the sperm, and she could purchase sperm elsewhere. Because she had a “meaningful” choice, could have consulted an attorney, and chose to enter into the contract, the judge found the contract was not unconscionable due to one-sided bargaining power. His discussion of the issues shows how little he understands infertility and the fertility industry. This could be pointed out in future cases to differentiate his ruling.

Those who are unable to conceive but who desire to have children may go to great lengths and spend thousands of dollars to find a way to have a child. Teuscher didn’t have a choice about whether to use fertility services because she wanted to have a child and was unable to do so without such services. Most, if not all, fertility contracts utilize the same language, restrictions, and penalties in their contracts. If Teuscher indeed had purchased her sperm from another fertility clinic, the contract likely would have been the same. This means consumers/buyers have no real choice when deciding to use the services of a fertility clinic. We must educate our lawmakers so they have a meaningful understanding of these issues.

If any part of Teuscher’s contract is so unfair that we as a society would say it goes against the public good, it would be considered unconscionable and, therefore, void. We are making humans here. A person has the right to know their genetic identity and history. In the world of adoption, over the years we’ve come to understand it’s in the best interest of children to know they are adopted as well know their genetic identities. Why should this be any different for DC children? The judge does not understand the psychological ramifications of not knowing where you come from.

The judge states, “The promise to honor the donor’s privacy interests is clearly reasonable given the contact.” But is it? Anyone who’s taken a direct-to-consumer DNA test knows you can figure out who matches are with little effort because even if your father hasn’t done a DNA test, it’s likely his uncle’s cousin has. With this information, you can determine your own matches. The court obviously does not understand this shift. And neither do fertility clinics. For the health and well-being of the child, we must move toward “open” use of sperm and eggs, because it is no longer possible to remain anonymous—that cat’s out of the bag.

The ruling states a DC child can discover genetically relevant medical information without seeking ancestry or other information that would destroy anonymity. Clearly, the judge does not understand how these tests work. You cannot separate medical and ancestral information. What is ancestral information? Teuscher’s daughter’s ethnicity? Clearly she should be entitled to this information. It’s likely the judge meant knowing who her relatives are when he referred to “ancestral information.” If a fertility clinic tries to rely on Judge Rice’s opinion here, opposing counsel should be able to easily differentiate the new case from Teuscher’s, since the judge’s language and use of terminology is not clear.

The judge’s ruling finds that Teuscher should not have reached out to the grandmother match since she agreed to not contact Donor #2744 directly or indirectly, but she had every right to the genetic information available. This means if you have a DC child, you can use a direct-to-consumer DNA test for your child. However, you cannot reach out to their relative matches. Remember, it’s only the parent(s) who are parties to fertility contracts, not the children. When a child is younger than 18, the parent is legally responsible for the child’s actions. When DC children become 18, they can reach out to any matches.

If we think Teuscher should have the right to reach out to her daughter’s relatives, then we need to change the laws to reflect this. At this time, the fertility industry remains relatively unregulated. There are no consequences for donor or fertility clinic fraud, which leaves DC children and their parents—as well as anyone seeking services from a fertility clinic—vulnerable. If someone lies about the color of a car they are selling, it’s not that big a deal. But if a seller lies about a medical problem and then sells his sperm and creates a child who develops a medical issue, that is a big deal. Parents using fertility services must have access to accurate information and all of the information our technologically advanced society can provide regarding donors and assurances they are receiving the agreed-upon goods.

Let’s not forget what we are talking about—the creation of human beings. We must do better as a society. We must work to change our laws to ensure the DC community has access to all relevant information and that there are consequences for failures to disclose, for providing false information, and for improper handling of specimens.

So, go ahead and open a Pandora’s box. See if you should be wearing lederhosen or a dashiki and find out what those health reports have to say.By Kara Rubinstein Deyerin, co-founder of Right To Know, a nonprofit organization that educates the public and professionals on the complexities of the intersection of genetic information, identity, and family dynamics. It advocates for people whose genetic parent is not their supportive parent—not the person who raised them or their legal parent.

By B.K. Jackson

Until recently, most people likely haven’t encountered someone who’s been knocked off balance by a DNA test result, so it’s understandable they might not appreciate the magnitude of the impact. But it’s just a matter of time. Mind-blowing DNA revelations are becoming so common that some DNA testing companies have trained their customer service staff representatives to respond empathetically. While those employees may know the right thing to say, here in the real world the people around us often haven’t got a clue how it feels — like a punch to the gut.

If you’ve become untethered from your genetic family, you might get a second surprise: some of your friends and loved ones may be remarkably unsympathetic, often infuriatingly judgmental, and sometimes even hostile. It’s clear that although DNA surprises have become ubiquitous, social attitudes haven’t kept pace, and a stigma remains.

When you’re in a free fall and looking for something to grab hold of, negative reactions can set you spinning off your axis.

It shouldn’t be surprising that people may not know what to say to someone who’s received shocking DNA results. After all, few know how to comfort someone who’s experienced the death of a loved one, even though grief is a universal experience.

If your world has been rocked by a DNA surprise, let those around you know what helps and what doesn’t. And if you haven’t been so affected but want to help and support someone who has, it’s worth trying to put yourself in their place and imagine what the experience has been like. Or better yet, simply ask. But think twice before adding to their distress with one of these unhelpful yet commonly heard responses.

This well-meant platitude isn’t comforting to those who didn’t feel loved and nurtured by the dads who raised them. It’s like pressing a bruise. They wonder whether their biological fathers would have given them the love their dads didn’t or if the dads who raised them loved them less because they weren’t true progeny. And those of us lucky enough to have had precious relationships with our dads don’t need that reassurance. It’s like telling the bereaved their loved ones are in a better place. It’s what people say when they don’t know what to say. It doesn’t soothe our roiling emotions or patch the holes in our origin stories.A more cynical take on the same idea, this attempts to make light of those roiling emotions. If we were lucky, we know our dads are the men who loved us, bandaged our knees, held us, worried about us, sacrificed for us. Our love for them and theirs for us is ineffable, immutable, inseverable. But it doesn’t make us any less curious about the men whose not insignificant sperm gave us life and gifted us with half our genetic makeup.This tries to mollify us and discount our feelings at the same time. Blood is exactly what makes family, consanguinity being the first definition of kinship. Certainly there are also families of affinity, but the familial love we feel for them doesn’t alter the fact that our blood relatives exist and they matter to us.Of course we’re the same people! And yet we’re not. We may feel diminished, less of who we thought we were, or, if we always knew deep down something was amiss, more at ease, more authentically ourselves. All the cells in our bodies are different than we thought they were. Each contains the DNA of someone unexpected that encoded the traits that are the foundation of who we are.No, we can’t. But missing is akin to longing. We can wonder what we missed and long for what never was. “What you don’t know can’t hurt you” — the flip side of this comment — is equally untrue. It’s precisely what we don’t know that does hurt us. We don’t know where we came from, what genetic landmines could detonate our health, or the biological relatives who may be out there, somewhere, not even realizing we exist.Letting loose the family skeletons tends to be frowned upon. But just as grief is too heavy to be carried alone, keeping secrets is a lingering burden that feeds isolation and loneliness. It’s a comment that whispers, “You’re a dirty little secret.” It’s not our shame, but it is our truth to tell. As Anne Lamott famously wrote in “Bird by Bird,” “You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.”Wonder and longing often fuel a desire for reunion with biological relatives, which may be perceived as an affront by our families or as a threat by biological relatives who fear the shame exposure of their long-kept secrets would arouse. Discouraging a search for biological family sends the message that our need to know fundamental truths is insignificant compared to others’ needs to protect their secrets.That millions take DNA tests to see where they come from and millions more trace their lineage seems evidence enough that knowing about one’s pedigree matters. But tracing a family tree isn’t an option for NPEs (non-parental events or not parent expected) who can’t establish filiation, nor is protecting themselves against collateral damage — invisible health risks. For example, I worried my whole life about birth defects, cancers, and other genetic diseases that were the legacy of my Russian ancestors. Fortunately, I discovered I descend from robust Sicilians who lived long, healthy lives. Not so lucky is the ticking time bomb of a 40-year old NPE who doesn’t know he has a father and four half-brothers who all died of heart disease before 45. We simply want the same knowledge everyone else has.Having a good life doesn’t make us immune to despair, confusion, or grief. Ask anyone who’s lost a parent. Comments such as these disregard the sense of dislocation we feel after having been unceremoniously severed from our family trees. And lack of ceremony is key, because when something is lost, even if it’s something we didn’t know we had, there’s grieving to be done, whether the unknown father is dead or yet living. But there are no ceremonies, rituals, or social supports for this particular bereavement.We likely won’t get over it unless we’re able to grieve our losses and gain answers to the questions that others never have to ask about the things they take for granted — knowledge that is their birthright, but, they believe, not ours.Understand it’s complicated. The issues and feelings a DNA surprise give rise to are numerous and diverse. The most meaningful thing you can do is listen and acknowledge the feelings, but withhold judgment. Sometimes a willing ear and kind silence is the best response. Consider how you might feel if you learned you’ve been a secret for decades and what it’s like to see your family tree pruned by half. Erase everything you know about your father: his name, appearance, forebears, and medical history. Erase everything you share with him: his surname, religion, ethnicity. If you didn’t know all this, would you still be who you are? Would you not feel stripped bare and dispossessed? As Michael Crichton wrote in “Timeline,” “If you didn’t know history, you didn’t know anything. You were a leaf that didn’t know it was part of a tree.”Return to our home page to see more articles about NPEs. And if you’re an NPE, adoptee, donor-conceived individual, helping professional or genetic genealogist, join Severance’s private facebook group.BEFORE YOU GO…

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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?”

Amber van Moessner, Aubrey Smyth, and T.J. Raphael, Alison Luntz Photography

When Amber van Moessner was 29 years old, she was shocked to learn through taking a 23andMe DNA test that she’d been donor conceived and that the father she’d grown up with was not her biological father. To try to make sense of this bewildering and distressing news, she took a deep dive into the research on the subject. “I was doing a ton of reading and interviewing anyone I could talk to about this issue — doctors, medical historians, other donor conceived folks.”

At the same time, filmmaker Aubrey Smyth was casting about for subject for a new film. After her short film about surviving cancer, “The Bout,” won the grand prize at the Moët Moment Film Festival, Smyth was given tickets to the Tribeca Film Festival, where she learned that Tribeca Studios and DNA testing company 23andMe had partnered to make “Identity” — a series of short, impactful stories about journeys of personal discovery.

van Moessner mentioned her story and her research project to T. J. Raphael, a journalist and producer at Slate, who knew that Smyth was in search of a documentary subject that might be a good match for the Tribeca-23andMe project. After Raphael (a consultant on the film) connected the two women, van Moessner invited Smyth to her support group for donor conceived people, where Smyth was shocked to learn that some donor conceived people had inherited genetic disorders from their donors and had no legal ability to access information about their donors’ medical history. “Almost all of the support group members had been lied to by their parents about their conception,” recalls Smyth, who was inspired by the way van Moessner and the other group members were advocating for change at the state and federal level. “It made a big impression on me because the only stories I heard on the news were about the big, happy family reunions and how everyone looked alike — end of story. I wanted to give Amber the platform to reveal the realities of being a donor conceived person and raise awareness about the lack of regulation in the fertility industry,” she says.

The result of this serendipitous connection is “The Need to Know,” a powerful documentary film that premiered on Vimeo during the 2019 Tribeca Film Festival. Filmed in a total of 5 days in Brooklyn, Chicago, and Sacramento, the documentary, which took six months to complete, manages in a mere 11 minutes to express the range of complicated emotions experienced by donor conceived people and the messy web of issues arising from ethically dubious fertility industry practices.

In the film, van Moessner recalls her surprise when a DNA test reveals that she’s primarily Jewish, yet no one in her family is Jewish. In an emotional phone conversation, she confronts her parents, who acknowledge the truth, telling her they chose to believe it was her father’s sperm, not the donor’s, that resulted in her conception. “How do you think about who you are,” van Moessner asks, “when you don’t know who you are?” At 23 weeks pregnant and concerned about the health of her future child, van Moessner, along with her newfound half-sister, Kaitlin Thompson, begin to act on their need to know who their father is. What unfolds is a striking synopsis of the costs of donor anonymity. Smyth follows van Moessner to Chicago, where she meets Nick Isel and his attorney, Michelle J. Rozovics, to discuss Isel’s FDA Citizen Petition requesting an end to donor anonymity, increased duration of record retention, and record redundancy. As Smyth interviews several other donor conceived individuals, advocates, and an egg donor, their stories speak to the need for ethical oversight and regulation of an industry that’s almost entirely ungoverned. More than their words, van Moessner’s expressive face communicates the pain and frustration of finding herself in an untenable position over which she has no control.

Smyth, who at 21 created her own production company, Gingersnap NYC, has been a film and commercial director for nine years, with a background in narrative filmmaking and documentary-style branded content. “I was so moved by Amber’s story that I decided to direct my first documentary, and I wanted to tell Amber’s story with strong intention.” She describes the narrative techniques she used in the composition and framing to symbolize and accentuate the content of a scene and tell van Moessner’s story:

“In a scene in which Amber’s biological father tells her and her half-sister that they have 75 siblings, we frame only half of their faces and leave negative space between them. This is juxtaposed with an angle on the father, who is centered and fills the empty space. Later, the camera lingers outside his house on a charm of hummingbirds he cares for, symbolizing in an unforeseen way the 75 children he’s fathered. The group scene shows each person stationary and centered in the frame so the audience must concentrate on what they’re expressing. When Amber is interviewed, she’s placed against a black and white background to convey how this issue is not one-sided. The prisms and distorted faces at the end symbolize the donor conceived people who discover the truth and question their identity, many of whom told me they would stare into the mirror and not recognize the person looking back at them.”

“Documentary film,” Smyth says, “has the unique ability to change minds. ‘The Need to Know,’ she adds, “treats conflicting perspectives fairly, and we were able to reach people with emotion and logic. We cover the ethical and legislative issues that donor conceived people have with the business of creating people, and it was important for the film to uphold integrity. We relied on facts while simultaneously conveying very difficult emotions.”

It wasn’t easy for van Moessner to speak so candidly and publicly about something so new, shocking, and painful. “I think a lot of people wonder why I would share something so personal and really drag my family through that. But, ultimately, if I can stop one family from lying to their child, or make someone reconsider being, or using, an anonymous donor, it will all be worth it,” she says. “I don’t want anyone else to go through the pain I went through.” Because a lot of people in her family didn’t know her story, she describes the film as being a “bit of a coming out. I was able to rip off the Band-Aid of ‘telling’ without having to individually tell dozens of people. My parents were hesitant about being involved, but they were ultimately supportive as well.”

However difficult it was to tell her story, van Moessner believes it also proved to be healing. “It was a way to process my grief, confusion, anger, and frustration,” she says. “It made me feel like I could manage all of that if I could do something about it.” Doing something required increasing awareness, and she remembered well how little aware she had been about these issues until the subject hit home. “Before I found out I was donor conceived, sperm or egg donation was never something I thought twice about,” she says. “I had friends who’d considered being egg donors, and I knew sperm donation existed, but I had never thought about the implications or the industry behind it. And now that I’m telling my story, so many people have said to me, ‘I never thought about this!’ So I really wanted to raise a flag and say, ‘hey, have we as a society really thought this through?’” She points to a meme that turns up often in the donor conceived community — a quote from “Jurassic Park”: “Your scientists were so preoccupied with whether or not they could, they didn’t stop to think if they should.”

The response to the “The Need to Know” has been overwhelming and positive. Not only was the film viewed 2,000 times in two days, but van Moessner received an outpouring of positive response from individuals in the donor conceived community. One person told her they posted the film on social media as a way of coming out to friends about having been donor conceived. Smyth believes the facts presented in the film offer a compelling argument for the need to know about family medical history. “I hope the film proves why it’s important for donor conceived people to have access to their medical information and to know who their biological parents are and shows the actions donor conceived people are taking to change the system. The American Society for Reproductive Medicine, Smyth observes, has acknowledged that anonymity of sperm and egg donors is no longer sustainable due to the advent and popularity of genealogical DNA testing. “This conversation urgently needed to happen because the law has not kept up with modern technology.”

Smyth hopes to extend the conversation by developing a docuseries that looks at the ethics of donor conception and the fertility industry and examines pertinent legislation. “There are many sides to this topic, and I want to explore the variety of perspectives.”

And van Moessner, though encouraged by the reception and pleased and proud to have raised so many important issues, acknowledges that there’s more work to do. “The struggle with creating a short film is that there are so many issues we left on the cutting room floor. I want to talk about donor fraud. I want to talk about the complicated ethnic/race/class issues that abound in the donor conceived world. I want to talk about older donor conceived people who have fewer resources when they find out and discuss the implications of that. I want to talk about LGBT issues and how they fit into this conversation. There are so many layers to this issue — we really just scratched the surface, but I hope it’s enough to pique people’s interest and let them do their own investigating.”“The Need to Know” is one of 23 equally compelling films that all explore feelings arising from a DNA journey. The project began, says Tracy Keim, VP of brand and consumer marketing at 23andMe, when the company was invited to be a sponsor of the Tribeca Film Festival. 23andMe suggested something a little different —  a more branded integrated sponsorship that would tap into Tribeca’s community of filmmakers for ideas about films concerning DNA stories. “They were excited,” Keim says, “because they’d never done anything like this and it was a cool challenge for the next level of cobranding and sponsorship.”

The project came together quickly. “We flew out last year to the Tribeca Film Festival and spoke to a group of filmmakers, took submissions, and looked at more than 50 treatments that were amazing.” They were looking for tension-filled stories with raw subjects that illustrate what’s at stake in these DNA journeys. They selected and commissioned 23 filmmakers — insisting that at least half be women — and set them loose with virtually no guidelines or restrictions except a requirement to show a rough cut and permit editing. “We were very light-handed,” Keim says. “We didn’t tell them how to make the films or what to do.”

Anticipating 3- to 5-minute films, 23andMe was surprised when many came in at closer to 13 minutes. “The filmmakers loved it because as they got into it they felt so passionate when they realized the humanity behind the science, so they wanted to do more.” To celebrate the launch of the films, the 23 filmmakers and their subjects were invited to the Tribeca Film Festival, and five of the female filmmakers took part in a panel moderated by filmmaker Dylan McGee, who runs Makers, a platform that aspires to assemble the largest collection of women’s stories.

What these extraordinary filmmakers captured are diverse stories of birthparents on quests to find the children they’ve longed for their whole lives, children looking for the parents they’ve never known, adoptees searching for siblings, NPEs (non-parental events or not parent expected) rocked by surprises, transracial adoptees exploring their lost cultures — all people reaching for the pieces of the puzzles of their lives, each seeking to understand how their past has influenced their present. These rich, captivating stories skate across issues of culture, ethnicity, race, human rights, shame, and truth. Each in its own way addresses how we make meaning of our histories and DNA connections and how we define or redefine ourselves.

Embracing knowledge of the past can be empowering, says Keim, whose aim is that the films serve as a platform that will embolden viewers and let them “look into their past to heal their pain, move forward, or discover something new that can lead to a more fulfilling life.” She hopes the films give viewers courage and help them realize they’re not alone.

View the trailer here and watch all the films on Vimeo. In addition, on YouTube you can view films about 23andMe customers created by documentarians from Transient Pictures, a NYC documentary production company. You can also watch customer-submitted stories — and submit your own — at the company’s Stories Page.

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.

Advocacy Snapshot is an ongoing feature that highlights the views and efforts of individuals working to raise awareness, amplify voices, and stand for rights. Here, Courtney Tucker, founder of the U.S. Donor-Conceived Alliance (USDCA) weighs in.There have been individuals and small groups around the world working for donor conceived people’s rights for many years, but there’s an issue with visibility. Even now, having been in the community for more than a year, I struggle to fully grasp what has happened and what is happening. My hope with the U.S. Donor-Conceived Alliance is to provide a platform where information and resources can be gathered and voices may be elevated. I saw what the Donor Conceived Alliance of Canada and organizations in other countries were building and was shocked to learn that the same hadn’t been done in the U.S. My background is in non-profit marketing and management, so while my strengths may not align with filing lawsuits or contacting representatives, I would love for our organization to support those who do choose to take those types of actions.

In the U.S. specifically, I think one of our biggest hurdles is that many of the changes we hope to make need to happen at the state level. Even if you succeed at banning anonymity in one state, there’s nothing stopping anyone from driving over to the next (or even mail ordering!) for anonymous gametes. This has to be a coordinated effort. Adoptee advocates seem to be gaining traction in that regard, with many states making changes toward the opening of original birth certificate (OBC) records.Earlier this year, the USDCA polled 85 donor conceived people about where our priorities should lie. The vast majority would like to see an end to anonymity, caps on the number of offspring allowed per donor, better counseling for donors and commissioning parents, and stronger regulated record-keeping, including up-to-date family medical histories. There was slightly less emphasis placed on a central registry, such as Victoria, Australia’s Victorian Assisted Reproductive Treatment Authority (VARTA), and ending payment for gamete donations (an issue Canada is currently battling).The USDCA is still in the very early stages, but you can fill out this form to register as an ally and join our mailing list. If you are not in the U.S., we have a list of other organizations around the world here.  On a local level, I highly recommend finding an adoptee support group to join. Of course, ask first to make sure groups are comfortable with a donor conceived person joining. I’ve made some very good friends in my group who right away said, “of course, you are half-adopted.” While our online communities are essential, it can also be very empowering to make “real life” connections.I think this depends on the individual. Working to create change can be cathartic, but I think it can also serve as a distraction — a means to avoid the real healing. And that’s okay. This process is an ebb and flow, and if distraction through action is what’s getting you through the days, go for it. We just need to stay mindful that when the flow pulls us away from advocacy, that’s okay too. Look out for each other, check in on occasion. Burnout is very common in both the non-profit world I come from and the advocacy world I’ve just dipped my toe into. I recently started reading “In it For the Long Haul: Overcoming Burnout and Passion Fatigue as Social Justice Change Agents“ by Dr. Kathy Obear. The first couple chapters really resonate with what I’ve personally experienced and witnessed in others. Go into advocacy because you feel passionate about advocacy — if healing happens along the way, that’s just a bonus.Courtney Tucker is a 30-something donor-conceived individual living in Arkansas with her cat and a large collection of cameras and vintage clothing. She works as the marketing coordinator of a major local non-profit and in her spare time leads the U.S. Donor-Conceived Alliance. She found her “donor” father and four half-siblings in 2018 and is always happy to show off photos of her new nieces and nephews!

By B.K. JacksonWhen Julie Lopez was born, she was removed from her first mother and taken to an orphanage, where she lived without a primary caregiver for two months until she was adopted. She had a good upbringing in a loving home, yet for much of her life was troubled by puzzling symptoms. At one point, for example, she experienced dizzy spells and disorientation that made her feel “as if time moved out of space.” She went to a neurologist who prescribed medication for what he believed to be extra electrical activity in her brain. “My life was pretty great, so some of the symptoms I had were inexplicable to me.”

It’s a phenomenon she believes is common among people who believe their early lives were essentially carefree. After working with a therapist skilled in brain-based therapies, she came to know that some of her symptoms were triggered by behavior-influencing codes stored in her implicit memory — the memory that can’t be consciously accessed. As a result of that therapy, the symptoms dissipated. Lopez attributes much of her own personal therapeutic success to those early experiences with brain-based work.

Cracking those codes is the subject of her new book, “Live Empowered!: Rewire Your Brain’s Implicit Memory to Thrive in Business, Love and Life.” There, she explores how these memories, which normally help people function efficiently, can become tripwires, setting off cascades of negative emotions and destructive symptoms.How can you be affected by experiences about which you have no memory or that happened before you were able to understand and express them through language?

It all begins in the hippocampus, a part of the limbic system, which controls the autonomic nervous system. It’s the part of the brain “responsible for coding and putting date and time stamps on our explicit memory — the memory we can consciously recall,” says Lopez. There are four circumstances during which information is stored in implicit memory.

1. When an individual is in the first three years of life, before the hippocampus is fully developed
2. Following a physical brain injury that damages the hippocampus
3. When stress levels are high, cortisol levels rise, and the hippocampus shuts off
4. When bodies dissociate from the experience of extreme trauma and the hippocampus similarly shutters.

Implicit memory, says Lopez — founder of the Viva Center, a Washington, DC community of therapists specializing in brain- and body-based therapies and a trauma-informed approach to healing — is a concept developed in the early 1900s by a number of scientists in different disciplines to explain how our systems hold data that we don’t consciously remember.

Every human, says Lopez, has implicit memory, which she describes as a hidden control panel in the brain — not one you can consciously direct, yet which holds all the data that informs how we live. “Everything stored in implicit memory is there to help us in our most primary function, which is to survive and to excel.” Although we can’t directly tap into this vast reservoir of experiential data, it nonetheless influences our behavior and wellbeing, both positively and negatively.

Suppose, for example, there had been a time you felt unsafe during your infancy and that period of danger coincided with a terrible windstorm. Those experiences were encoded in your implicit memory. Now, when a strong wind blows, you may feel your heart rate rise, your palms sweat, and your breath quicken — reactions that may make you afraid of going outside. You don’t remember the inciting event or the windstorm. All you know is that when the wind kicks up, it stirs strong emotions. Or perhaps you were terribly frightened in infancy by a man with a big bushy moustache. Even now, without knowing why, you may recoil from anyone with similar facial hair. These implicit memories can be triggered by any sensory information — a scent, a color, a sound, or anything felt or observed.Infants and babies taken from their birthmothers tend to perceive that severance as a danger, a threat to their well-being. The physical sensations associated with being removed from their mothers and the consequent feelings of being unsafe are stored in the body and the mind as implicit memories — remnants of trauma that remain and can cause distress throughout life. But because individuals don’t understand these as memories — that is, as narratives they can express — they may not identify their experiences as traumatic or link their distress symptoms to these early preverbal experiences.

The loss of a primary care person, Lopez explains, is significant, and deprives a child of mirroring (when a parent reflects a baby’s emotions as expressed by voice or expression) and attunement (a sense of safety that develops when parents are responsive to an infant’s needs). Often, those who didn’t have those primal experiences have symptoms of anxiety related to friendships and intimate relationships. “That struggle can look like any part of the classic symptoms for PTSD,” says Lopez. “It doesn’t mean they meet the diagnostic criteria, but they’ll exhibit avoidance of things associated with vulnerability in relationships.” Other symptoms may include flashbacks, nightmares, dissociation (a sense of separation or disconnection from oneself), anxiety, and depression. They may rely on coping strategies to avoid having to be close, such as excessive drug or alcohol use or other types of behavioral addictions that help them avoid what they see as threatening.

“There may be codes that are put in our brains that tell us the way to get through life is not to attach to people, because when you really attach, you get hurt,” says Lopez. Many people who’ve had great losses in their lives or in relationships, she adds, have had those types of codes embedded without being consciously aware of it. She’s worked with clients who say they want a relationship, yet their behavior tells a different story because of those codes. Thus, for reasons they can’t understand, adoptees may fear being abandoned, be unable or afraid to securely attach to others, or find it difficult to trust people.

Similarly, those who were not raised by their genetic parents, even though they may not have been aware of that fact until adulthood — NPEs (non-paternal events or not parent expected), donor conceived people, late-discovery adoptees — also are likely to have been imprinted with memories about which they have no conscious awareness and which may cause dis-ease. They may react in ways they don’t understand to people, places, sights, sounds, smells, or other sensations associated with childhood experiences.

NPEs and others also may have stored sensory data from subtle or outright signals they observed that indicated they didn’t belong, were unwanted, or were a source of conflict between their parents — sensations that may stimulate feelings of disconnect, alienation, and inauthenticity. “When a child grows up without genetic mirroring and in situations in which there is deception — when the parents are actually sitting on a secret — the child picks up on data energetically, in a nonverbal way, and those pieces of information can be stored in implicit memory,” says Lopez.

Furthermore, she adds, “There are some physical and visceral experiences that go along with being disconnected from people that you’re related to.” Although in her practice she most often sees clients with expressions of anxiety, others may present with feelings of hopelessness and despair. There may be uncomfortable bodily sensations and symptoms such as those associated with obsessive-compulsive disorder, “where they have a compulsive drive to put things where they belong or keep things in order or a difficulty handling stress either personally or professionally. They may have overly controlling behavior because it feels scary to loosen the reins on relationships.”

They don’t grasp that they’re being triggered by unconscious memories. It’s as if they’re being sent signals that they can’t  see, hear, or understand. So the feelings their memories engender may seem to make no sense and to be incongruous to the situations in which they arise. And when symptoms occur, clients have no reason to suspect they’re linked to past experiences. But, says Lopez, symptoms are always telling a story. The question, she adds, isn’t what’s wrong with you, but what happened to you? When they don’t know the answer — when they’re unable to peg their symptoms to something in their past that was destructive — they may feel there’s something wrong with them, that they’re broken or defective.Lopez is dedicated to changing these destructive patterns and helping individuals realize that symptoms occur for a reason. Since traditional talk therapies are typically ineffective for treating issues arising from memories for which one has no words, she sees it as her mission to help people use more pinpointed techniques that have been advancing in the last 30 years. In “Live Empowered!” she describes three brain-based therapies — Eye Movement Desensitization and Reprocessing (EMDR), Brainspotting, and Neurofeedback — through which therapists can access the mind’s hidden control panel, explore the root causes of obstacles, and reprogram responses and behaviors.

Developed by clinical psychologist Francine Shapiro to mitigate symptoms linked to traumatic memories, EMDR is an evidence-based therapeutic method that relies on bilateral brain stimulation, whether through eye movements, sound, or touch, to target and process memories stored in the nervous system and manage maladaptive behaviors that stem from them.

David Grand, PhD, who discovered Brainspotting, describes a brain spot as a “a point in visual space that a client has a strong reaction to.” With his technique, a therapist uses a pointer to guide clients’ eye movements across their fields of vision to help identify those points, which, Lopez writes, “hold an active memory (explicit and implicit) tied to an undesired symptom or corresponding to the neural pathway you want to modify.” Brainspotting helps them process and let go of the stored emotions.

Neurofeedback, or electroencephalogram biofeedback, is a therapeutic strategy that that tracks brainwave activity and teaches clients to modify their brainwaves. When those modifications move in a direction that influences the brain to function more efficiently, clients receive visual, auditory, or other types of feedback that reinforce their efforts.

Each of these techniques is effective due to neuroplasticity — the brain’s ability to adapt, reorganize, and form new neural connections. These aren’t the only approaches to accessing implicit memory and treating trauma. Other approaches falling under the umbrella of somatic therapy are used by some therapists to target the encoded memories through the body rather than the mind. And therapists can use many additional nonverbal approaches outlined in “Live Empowered!” to decode implicit memory.

Working with implicit memory, Lopez observes, is a great opportunity to clear troubles or roadblocks that might otherwise impede individuals for the rest of their lives. “It’s about changing the codes that are driving what’s going on now so that people can live more productive lives, be successful, and feel good about themselves.”

Check back for more in-depth explorations of these individual brain-based therapies as well as somatic therapies that may also be helpful for problems arising from trauma stored in implicit memory.In addition to reading her book, you can learn more about Lopez and the techniques she uses at her website and in this episode of the Adoptees On podcast.

By Laura McMillianAs a teen, I’d once imagined I had a secret identity. Little did I know that I was right.

All my life, I’d learned to live with what could be described as a pervasive form of impostor syndrome — a sense that I was never fully able to know or be myself, whoever that was. Sure, I recognized certain stable personality traits in myself, such as kindness, rationality, humble priorities, and interest in the well-being of others. But they weren’t enough for me to fully know who I was on a gut level. I could also list all the factual pieces of information about myself, including the good, the bad, and the neutral — my ethnicities, behavioral and emotional tendencies, intellect, biases, tastes, political and religious views, and personal principles. But the sum of these facts never quite added up to me feeling like a full person.

I craved an understanding of the core aspects of myself and sought it by asking my parents about themselves and their family histories and by trying to understand my psychology and physiology through clinical testing and professional feedback. Still, something was always missing. Why? How could I fill it in and gain the self-confidence I should have had? The mysterious identity gap had me grasping at straws for all my young adult and adult life.

As I became older, the identity gap closed a little bit, and by the time I was in my mid-thirties, I might have felt as if I were 80% of a complete, knowable person. That missing 20% remained like a chronic pain I’d learned to live with and was resigned to always having. I still suffered from confusion in my career and relationships, and there seemed to be no answer or solution. But being stubbornly genuine, I never put up a false persona so that others could more easily grasp me. Those who did grasp and befriend me seemed to share a similar sense of alienation.

When I was 34, a 23andMe DNA test revealed that I was not genetically related to my dad, leading me to conclude that I had likely been donor conceived. Once I overcame the initial shock and denial, I felt as if a new door had opened. Finally, there was hope for a way out of my inexplicably confused sense of self. I’d always loved my dad and never suspected or hoped not to be related to him, but I chose to view this development in as positive a light as possible. This new knowledge offered me the chance to get answers about why I was the way I was — why I was different in personality and thinking style from the parents who raised me. Generational difference was never a sufficient explanation. Being donor conceived absolutely was.

The drive to identify half of my origins came over me like a tornado; this new and all-consuming obsession swept up everything in my world. The human mind naturally seeks completion, and mine very badly wanted it. For three years, I underwent trials and tribulations that failed to give me definite answers.

Finally, when my biological father appeared in my AncestryDNA test match list, I was able to walk through the door that had opened three years earlier. His four daughters, who didn’t know he’d been a sperm donor, had purchased the test as a gift, ironically, for Father’s Day. He hadn’t been expecting to discover offspring; he’d simply been looking to further explore his genealogy. Just as I had done, he reacted with denial and skepticism. But once the reality settled in, he was very excited to have found me and happy to get to know me.

The hopes that had been raised by deducing that I’d been donor conceived were fulfilled by getting to know my biological father. It’s been a wonderful and remedial experience, not only because he’s an incredibly kind and warm person, but also because learning about my genetic paternal origins has changed me for the better. After first spending time with him, I immediately felt a shift at my core. At age 37, that ineffable part of myself that had always felt missing finally appeared in its proper place. It felt as if something at the back of my mind was finally healing. There was both emotional relief and a physical sensation of calm — an unprecedented feeling of serenity and wholeness. I think my levels of oxytocin (the cuddle hormone) went through the roof during that trip, just from being with him. Before, I’d felt like a house with only half a foundation. Now, with a whole foundation, I feel complete and stronger than ever.

One of the clearest changes relates to how I deal with difficult people. In the past, when people were at odds with me in any way, my sense of self felt threatened, as I was easily thrown off balance. I avoided confrontation at almost all costs, with the exception of those rare occasions when I was completely confident about my position. I was afraid of being tongue-tied due to all the second-guessing and self-doubt, too easily believing others’ insulting statements or comments intended to correct my errors, at least until I later analyzed the situation. Speaking out usually wasn’t worth the risk, and I missed out on some important opportunities to stand my ground. I thought I’d always be that way, no matter how much therapy or self-development work I did. But now that I’m certain of who I am, my sense of self is tethered in place, allowing me to stand firmly when I’m challenged or mistreated. Or, if I really am wrong about something, I’m more comfortable accepting and admitting it, then moving on. This actually makes me more relatable and likable to others. While I try to choose my battles wisely and to be tactful, I’m no longer frightened by challenging conversations. For the first time, expressing myself is starting to feel completely natural and comfortable. I’m unafraid to be fully assertive, and even my professional confidence has improved. Putting myself out there isn’t so scary anymore. The self-consciousness and excessive self-inhibition have evaporated.

Not only were these changes instantaneous, but they’ve also been enduring and will likely last for the rest of my life. I’ll always be grateful for my biological father’s warm reception, alongside my upbringing by loving parents.Laura McMillian, PhD, CPC, ACC, is 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.