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

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

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

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

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

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

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

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

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

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 Gregory LoyIn 2013, Danielle Teuscher, of Portland, Oregon, gave birth to a daughter, Zoe, who’d been conceived with sperm donated by an “Open ID” donor—a donor who’s open to contact when his donor-conceived offspring turn 18 years of age. Teuscher acquired the sperm from NW Cryobank, a Spokane, Washington sperm bank. Like other children conceived through donor sperm, Zoe not only lacked information about her ethnicity and ancestry, but she also lacked complete access to half of her medical history.

In hopes of learning more about Zoe’s heritage and any health risks she might face, Teuscher ordered a direct-to-consumer DNA test from 23andMe for her daughter. She had not attempted or intended to learn the identity of the donor, but when the results came in, there was apparently a close match on 23andMe who was willing to be contacted by matches. Teuscher sent a simple message through the 23andMe website indicating that the match’s son may be her child’s donor and that she, too, was receptive to contact. The match was puzzled, so Teuscher apologized and moved on. But the matter didn’t end there.

Soon she received a cease and desist letter from NW Cryobank threatening her with a $20,000 legal action for two breaches of a clause in an electronic agreement—one, having given her daughter a DNA test, and the other having contacted the donor’s mother. The letter warned her not to contact the donor or make attempts to discover his identity or background. Further, the sperm bank informed Teuscher that it had rescinded her access to four vials (she has five vials) of gametes that she’d paid for so that she might one day have another child who would be a genetic match to Zoe. What’s more, the company refused to allow Teuscher access to medical information updates from the donor or to be in touch with parents of other children conceived from that donor’s sperm, and it changed the status of the donor from “Open ID” to “Anonymous.” Should Teuscher use other DNA tests or try in any way to identify the donor, the letter said, the company would seek a restraining order or an injunction. Since NW Cryobank sent the cease and desist letter to Teuscher, it’s taken down its donor sibling registry, an action that harms all recipients of donor sperm and their children by preventing them from being able to connect with relatives and make other important connections for the children’s wellbeing.

In this age of widespread availability of DNA testing, many would argue both that anonymity is no longer sustainable and that a child couldn’t possibly consent to donor anonymity and waive her right to know where she came from. Still, NW Cryobank—arguing that a breach of donor anonymity could jeopardize the personal relationships of donors—took the punitive step of denying Teuscher access to her gametes and the promise of being able to bear future children genetically related to Zoe.

Not willing to sign an agreement that restricted her access and her rights, and refusing to accept that she’d not be able to conceive another child who would be a genetic sibling to Zoe, Teuscher became determined to fight back against an unregulated industry and argue for Zoe’s rights and, in the process, those of all donor-conceived offspring.

In June 2019, she struck back, filing a lawsuit in federal court in the Eastern District of Washington against NW Cryobank. In their complaint, the Teuschers’ make many claims. NW Cryobank has moved for dismissal of only three of these claims. The first of these claims that might be dismissed by the Court is that which seeks damages for violation of Washington’s Consumer Protection Act (CPA). “Washington has a strong policy through the enforcement of the CPA to protect consumers against business practices that are unfair and harm the public,” says Jill H. Teitel, Esq., of Law Offices of Jill H. Teitel, PLLC, New York, New York, the Teuschers’ lead counsel. “Teuscher has alleged that NW Cryobank’s practices were and are unfair and deceitful and negatively affect the public interest because they harm or have the capacity to injure persons,” says Teitel, adding that “Teuscher further alleges that at no time did she contract away her rights to her gametes.” Penalizing Teuscher for testing her child’s DNA was unfair. Changing the donor’s  identity designation from “Open ID” to “Anonymous” was unfair. Taking away the Teuschers’ ability—and that of all other donor recipients and donor-conceived offspring—to make contacts through a sibling registry that was promised by NW Cryobank was unfair. And masking the donor’s health updates by taking down the donor’s profile from NW Cryobank’s website was unfair. This donor had already stopped selling his sperm to the bank by the time Teuscher had purchased his sperm to use to get pregnant with her daughter, Zoe.

The second claim NW Cryobank seeks to dismiss is that the company’s contracts are unconscionable. “The complaint alleges that NW Cryobank presented Teuscher with an on-line ‘click-wrap’ agreement that didn’t permit review by a lawyer,” Teitel says. “Further, the agreement included many provisions that are biased toward NW Cryobank, for instance that any attorneys’ fees spent by the sperm bank on any court action shall be paid by the customer, which is against Washington law.”

The third claim NW Cryobank seeks to dismiss is the assertion that the company refused to acknowledge the severe emotional distress its actions have caused. The bank apparently cannot fathom that Teuscher’s rights have been trampled and that their conduct was outrageous and caused unconsionable injury to the Teuschers. It brashly questions why Teuscher would be emotionally harmed by its actions and completely denies the reality that she lost her gametes and, along with them, the hope of bearing children genetically related to Zoe.

Subsequent to the filing of the Teuschers’ lawsuit, NW Cryobank had filed a partial motion to to dismiss two of the complaint’s claims. The Teuschers’ legal team opposed that motion. When NW Cryobank failed to get that dismissal, Teuscher amended her complaint, mostly to clarify the damages and injuries. NW Cryobank recently filed its new partial motion to dismiss the three claims outlined above, including in this second motion the dismissal of Teuscher’s claim of intentional infliction of emotional distress.

An important aspect of this case is whether any outcome will have broader repercussions. Right to Know, a nonprofit organization in Washington State, is following the case closely because it’s a lightning rod, igniting issues that are central to the “Right to Know” movement. Further, this case, in effect, will shape the law on the boundaries of what a company can get away with in regard to a person’s genetic material and potential separation from relatives. The “violations” claimed by NW Cryobank appear to lend weight to the idea that it views itself as the de facto owner of Zoe’s genetic information. Adding insult to injury, NW Cryobank insists that Teuscher has no right to test Zoe’s DNA and also might be claiming that Teuscher pay for monetary damages, which begs the question, what monetary damages does it believe it has incurred?

Additionally, the contract that promised donor anonymity, as NW Cryobank interprets it, effectively restricts the rights of all of his extended relatives with regard to communication with donor-conceived individuals. It removes their rights to know or be known by all of their genetic family. Does a corporation or individual have the power to own this information without the consent of all parties involved? The courts will have to decide this and other interesting questions posed by this case, but if this is interpreted in the favor of NW Cryobank, it likely will have consequences extending beyond the Teuscher family and the donor-conceived community.

As previously noted, NW Cryobank has filed a second motion to dismiss Teuscher’s three claims. Based on the case file and discussions with lead counsel from Teuscher’s legal team, the Eastern Washington Federal Court will hear the case on January 30th to determine whether Teuscher’s three claims will be dismissed.

Teuscher also recently filed a motion to become her daughter’s representative for purposes of this lawsuit, and this issue should be decided soon by the Court.

Right to Know is following the case closely as it’s the first in the nation to fight back in this manner and challenge NW Cryobank’s aggressive practices and unfair policies. Because this ruling could have such a broad effect, we urge everyone to care and become involved. Join us in supporting Danielle and Zoe Teuscher and standing up for everyone’s right to know and own their genetic identities.

What can individuals do to help? Contribute to Teuscher’s GoFundMe campaign to help her keep her lawsuit alive. There are many expenses involved in an ongoing lawsuit, and she needs the support of our community to make a change and challenge the practices of NW Cryobank. Click here to donate.— Gregory Loy is a cofounder of the Washington State nonprofit organization Right to Know.For More Information

Read previous media reports about the case—from the CBS This Morning here and the New York Times here.

Click here to learn more about Right to Know.

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

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

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

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

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

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

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

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

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

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

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

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

As the new network television season begins this week, adoptees, NPEs (not parent expected or non-parental events), and donor conceived individuals are among the casts of characters on primetime programs. But will the series’ writers and producers bring a level of reality and depth to the depictions or simply exploit their experiences for dramatic purposes without accuracy, nuance, and sensitivity?

On October 2, the first show with a high-concept premise about donor conception premieres on Fox. The plot of “Almost Family” unfolds as it becomes known that renowned fertility doctor Leon Bechley boosted his clinic’s success rate by using his own sperm to help clients conceive—a practice that led to the conception of dozens of children.

While it would appear to be a plot line ripped from recent headlines, the show is based on the Australian Network 10 series “Sisters,” which premiered in October 2017 and may have been inspired by an earlier headline concerning an Indiana fertility doctor who in 2016 was sued for using his own sperm more than 50 times to inseminate patients. The show began streaming as a Netflix Original Series in September 2018.

As in “Sisters,” “Almost Family” focuses on the effect this bombshell has on Bechley’s daughter, Julia, and two women who discover that they were conceived from his sperm. One, Edie Palmer, has been a longtime friend of Julia. The other is a former Olympic athlete, Roxy Doyle.

Both shows purport to be about the redefinition of family and the issues that surface as these sisters face the facts of their conception, navigate the challenges, and encounter an ever-increasing number of siblings.

“Sisters,” with 7 episodes, begins promisingly enough. Dialogue suggests that feelings, experiences, and concerns arising from the characters’ discovery that they not only were donor conceived but conceived with the sperm of a fertility doctor will be on point. One of the sisters, for example, wonders if this secret has been the root cause of her lifetime of distress—if it explains why she’s never felt right, why she doesn’t resemble her father. Another sister tangles with a narcissistic mother who tells her she “didn’t miss out on anything” and insists that her life hasn’t changed as a result of this new knowledge. When her daughter tries to make her understand that it has everything to do with who she “is as a person,” the mother dismisses her feelings. Learning of the fertility clinic debacle, Julia Bechley feels as if it’s “just me in a car driving into a tidal wave of shit.” Another feels “shaking, spitting, fury.” One, looking on the brighter side, says, “we’re going to be the people we never knew we were supposed to be.”

If any of that resonates for donor conceived individuals and forecasts a sober exploration of the reality of the situation, what follows may be disappointing. “Sisters” takes a downturn after the first episode, steers away from reality, and devolves into silliness; the drama begins to seem more like an extended sit-com, with the premise as little more than a device for preposterous scenarios in which characters behave unrealistically as they become involved in complications that have little if anything to do with the ramifications of donor conception.

Will “Almost Family” handle the premise more seriously? At the Television Critics Association summer press tour, reporters, according to “TV Guide,” posed hard questions to the new show’s executive producer Jason Katims and writer Annie Weisman. One reporter questioned both an entertainment premise based on “insemination fraud” and the show’s depiction of Bechley as a sympathetic character. Katim asserted that the show focuses on the daughters more than on Bechley’s transgression and on how they connect after the public revelation of his wrongdoing.

Weisman assured reporters that the ramifications of Bechley’s actions and his breach of trust would be taken very seriously. The show, she insisted, will explore questions of identity and what makes a family while exploring the moral and ethical implications. At the same time, Weisman noted that more siblings will emerge over the course of the season, which she describes as “part of the fun of the premise.” Donor conceived individuals understandably might not only take issue with the premise being described as fun, but likely also will bristle at Weisman’s characterization of fertility doctors who broke the rules as outlaws with a visionary sense. It remains to be seen whether “Almost Family” will present a realistic depiction of donor conceived individuals, but the creators’ language doesn’t bode well for a nuanced presentation.Adoption is far from a new topic in network television, but what seems fresh is a departure from the stories in which adoption is the perfect, unblemished solution to babies in need and parents who desire them.

“This is Us”—a wildly popular tearjerker drama—follows Rebecca and Jack Pearson and their three children through flashbacks and flashforwards. It begins in the 1980s as Rebecca and Jack have conceived triplets. Rebecca delivers two healthy babies but the third doesn’t survive. By coincidence, another baby born the same day and whose mother died of an overdose has been abandoned at a firehouse by a drug-addicted father. The Pearsons adopt the child after overcoming obstacles in the legal system; a black judge refused to sanction the adoption of a black baby by white parents because the child would grow up deprived of his racial identity—this taking place decades before transracial adoption had become relatively commonplace and the adoptees’ unique needs were more widely recognized.

The child, Randall, grows up to be a big-hearted, anxious, highly emotional over-achiever. He’s torn between his love for Jack and Rebecca and his longing to know about his biological parents. In his thirties, he discovers his biological father, who’s nearing the end of his life, and learns that Rebecca knew who he was from the start yet kept that knowledge to herself. Plot lines are devoted to Randall’s fury over this betrayal and his ultimate joy in getting to know his biological father—joy tinged with anger about all the years they weren’t able to be together and the sorrow of knowing their time will be short. Oddly, Randall’s biological mother, so far, has been essentially absent from the drama’s flashbacks.

In later episodes, Randall and his wife, Beth, foster and hope to adopt a troubled black adolescent, Deja. Randall, thinking his experience will allow Deja to relate to him and holding firm to a belief that his love will conquer all, comes to learn that good intentions aren’t enough. Deja, seething and self-protective, educates and challenges him at every turn. The story lines highlight conflicted emotions—those of the characters and the audience—about whether the girl best belongs with Beth and Randall or her own mother who loves her.

“This is Us,” the new season of which premieres September 24, has inspired devotion among legions of viewers who believe the adoptee experience portrayed aligns with their own and has scored criticism from a smaller number who find the depiction too simplistic or unrealistic.

Across more than a decade, “Grey’s Anatomy” has highlighted issues related to adoption with a view that’s far from rose-colored. Throughout the seasons of the show—the 16^th of which premieres September 26—conflicts related to adoption are featured frequently. Early on, lead characters Derek Shepherd and Meredith Grey adopt Zola, a six-month old orphan whom Derek had treated at a clinic in Malawi, a process complicated by upheavals in their relationship.

In season 10, a brilliant new cardiovascular surgeon, Maggie Pierce, comes to work at Seattle Grace Hospital. She’s learned that her birthmother, Ellis Grey, a world-famous surgeon, had worked there years ago. What she doesn’t know is that Ellis’ daughter, Meredith, is her half-sister, or that the chief of surgery, Richard Webber, is her father. Webber figures it out first and, to keep the affair he’d had with Ellis from becoming common knowledge, he fails to inform Maggie. As the truth emerges, Maggie’s reunion with her biological family is anything but idyllic. It’s fraught at every turn with issues of trust and betrayal. As Maggie becomes a more prominent character in the drama, her loneliness and lifelong struggles to fit in, her awareness of having missing pieces, and her difficulty with relationships become apparent.

Jo Wilson, another surgeon at the hospital (now called Grey-Sloan Memorial) had been abandoned by her mother shortly after her birth. Story lines make evident that everything in Jo’s experience has been difficult—that her life’s beginning has created heartaches and challenges few can understand. She’s thought about her mother every day of her life and wondered about her own genetic identity. She wrestles with shame and fear of abandonment, which cause her to leave others before they leave her and fuels feelings of inadequacy and otherness. Despite a traumatic upbringing in foster care and an adolescence on the streets, she managed to become a doctor and to flee an abusive husband, creating a new identity for herself. In the most recent season of the show, Jo, having no medical history, is afraid to have children for fear of passing on genetic illnesses. To learn more about her health risks, she takes a DNA test and subsequently discovers the identity of her birthmother. She tracks her down and is devasted to discover that she’s not welcome in her life and, worse, is deeply traumatized by the reason for her mother’s rejection—that she was conceived as a consequence of rape.

These programs may not deal with the full complexity of adoption and foster care and may leave viewers with much to praise and much to criticize, but the characters register emotions that seldom have been expressed in previous screen portrayals. There’s grief, anguish, fear, heartache, conflict, guilt, shame, anger, and rage. There’s acceptance and rejection and happy reunions and bitter disavowals. There are identity crises and traumas associated with the loss of biological family and genetic identity. And in each situation, adoption and foster care aren’t events characters get beyond. They’re shown, instead, to have deleterious effects that persist throughout life.While adoption has been a through line in many television shows, NPEs probably haven’t had a significant presence on a network hit since “Peyton Place” in the 1960s. Until now. With a “Big Chill” vibe, ABC’s drama “A Million Little Things,” is about the friendships among a circle of individuals linked by their relationship to Jon Dixon, the group’s linchpin who died by suicide in the first episode. While the series hasn’t yet focused long and hard on issues of genetic identity, it appears to be poised to do so in the second season. The first season episodes set the stage for the potential development of a non-parental event, depicting the way an NPE situation can arise and how the secrets and lies begin.

Before Jon dies, his wife, Delilah Dixon, had begun an affair with Eddie Saville. Delilah and Eddie had planned to tell Jon, but before that could happen, Jon had taken his own life. Soon after, Delilah discovers she’s pregnant. Delilah tells Eddie there’s no question she’s carrying his child—that she and Jon had drifted apart and hadn’t been intimate since before the baby was conceived. As Delilah and her two children are reeling in the aftermath of Jon’s death and Eddie is trying to rebuild his relationship with his wife, Katherine, the two agree the child “must be Jon’s.” This pact—the beginning of a family secret—is seen in part as an act of love and protection. In light of the timing, while everyone is mourning Jon’s death, these characters are meant to appear sympathetic and selfless. This agreement is made to protect Delilah’s children and Eddie’s marriage. Clearly, of course, it’s also an act of self-protection—a means of avoiding the revelation of their affair and sidestepping their shame. It’s a promise of secrecy that, by the first season finale, is on the edge of being broken. But there’s more than one NPE situation at play in this drama.

The finale not only teases the eventual revelation of that secret but it also suggests that Delilah and Eddie may be influenced to come clean when they encounter an NPE and become aware of the trauma he experienced as a result of not knowing about his origins. In a complicated plot twist in this pivotal episode, it becomes apparent that a troubled and possibly depressed young man named Patrick—the son of a woman who had been a friend of Jon’s—is an NPE. As this revelation unfolds, Jon, in a video, appear to foretell the struggle that will play out over whether Delilah and Eddie keep their pact or tell the truth and prevent their child from becoming an NPE. “The more you try to push away the past, the more it haunts you,” Jon says. “And sometimes, as hard as it may be, you tell the truth,” he adds. The second season premieres September 26 on ABC.In the end, what does it matter if the shows get it right? It’s just television, and no one expects reality from network programs. That may be true, but television depictions drive cultural perceptions for good or for ill and form the basis for tropes that live on indefinitely unless they’re challenged. If you’re an adoptee or NPE or were donor conceived, you can influence the way you and others like you are represented in the media. It’s a long game, but raising your voice can be effective over time. At the highest level, you can change the media and control the narrative by contributing to it—by trying to get your voice and vision out there. If you have a gift for writing, research television writing and learn how the business works. Get a foot in the door by writing spec scripts. There’s an abundance of excellent books on the process, for example, Alan Heuth’s “Scriptwriting for Film, Television, and New Media,” and courses in television writing are widely available, for example at UCLA Extension, NYU, and Columbia School of the Arts. There’s even a free course from Coursera.

True, getting a script out in the word is easier said than done, but it’s not impossible. And it’s not the only way to influence the media. If you believe that issues related to genetic identity are misrepresented on network television or that characters are unrealistic or lack dimension, raise your voice. Media is influenced by the public’s reaction. Write to the networks and detail your objections. Send letters to the editors of national and local newspapers or write opinion pieces for these publications. Tell them what the media are getting right and what they are getting wrong and why it matters. The more you are able to control the narrative about the issues that matter to you, the more the public will reject the tropes, see dimensional human beings, and understand their experiences.

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!

Nick Isel doesn’t take no for an answer. When at 15 years old he learned that the distant man with the hair-trigger temper who raised him wasn’t his father, he confronted his mother, demanding details. He learned that he’d been conceived with sperm from the infamous Repository for Germinal Choice, popularly known as the Genius Sperm Bank, a eugenics experiment carried out by an eccentric millionaire, Robert Graham, who believed the quality of American genetic material had gone to hell. The repository was responsible for the births of 229 children from 1982 until it closed in 1999. At least 30 of those children are Isel’s half-siblings.

Isel was determined to find out the identity of his biological father, but his mother couldn’t recall the details about the donor she’d chosen so many years earlier and didn’t know what had become of the paperwork. It seemed like a closed door, but Isel refused to be stopped. He tore through boxes and boxes of records, bent on finding something that would provide a clue to his origins. He persisted until he obtained a document that contained the donor’s code name — Coral 36 — and little else.

Having that piece of paper gave him some measure of peace and even optimism, but there was little he could do with it. There was no longer a repository he could contact and no records he could access. When he became aware that journalist David Plotz was writing an article about the notorious sperm bank for Slate, he tracked him down and asked for his help. Plotz — who eventually wrote “The Genius Factory: The Curious History of the Nobel Prize Sperm Bank,” based in part on conversations with Isel — came through and provided Isel with the donor’s name. Just a teenager, Isel piled his family — his wife and baby son — into a car and drove from Illinois to Florida to meet his elusive father.

Isel brings this same tenacity and refusal to accept anything less than “yes” to his mission to persuade the government to protect the rights of donor-conceived people and force the mighty fertility industry — valued last year at $5.87 billion — to be accountable and bend to the needs of the individuals born from the genetic materials in which it trades.

Isel’s advocacy was spurred by the knowledge that like him, his 30 half-siblings from the sperm bank — thanks to the longstanding sway of donor anonymity — had no access to medical records that might allow them to assess their health risks. Nor did they have a way to obtain basic information about their genetic identities. Casting around for a way to make a difference, he lit on the idea of filing a US Food and Drug Administration (FDA) Citizen Petition to influence policy about donor anonymity and record retention, something that had never been done before.Isel researched online for about an hour and discovered that the FDA “already has an entire division dedicated to the regulation of biological and related products including blood, vaccines, allergenics, tissues, and cellular and gene therapies.” He then invested a full week’s time into reviewing the general process of submitting a Citizen Petition and developing his three-page document.

He took a pragmatic approach, not aiming to address all the ills of donor conception, but instead to target several of the most significant issues, setting a precedent and foundation for future action and creating a record state policymakers could draw on when proposing legislation.

Isel’s triple-pronged approach was designed primarily to ensure that donor conceived people are able to obtain their medical histories. It called for an end to donor anonymity, an extension of the record-keeping period from 10 to 50 years to allow individuals adequate time to obtain this critical information, and record redundancy — the retention of records in duplicate locations.

Like virtually all advocates, Isel believes an end to anonymity — which is being hastened by the advent of inexpensive DNA testing — is critical. “The environment of toxic secrecy created by the practice of donor anonymity places an unnecessary shame and stigma on all parties involved. Informed consent is not adequately provided to the donors or recipients when the unfulfillable promise of anonymity is made prior to donation,” Isel says. “Donor conceived people are divested of half of their biological identity and family medical history by design prior to conception and they are treated more unfairly by the practice than any of the other parties involved, despite the fact that by nature they are the only ones unable to provide any shape or form of consent,” he adds.

A 50-year record retention policy is essential, Isel says, “because many genetic diseases do not present until later on in life, and their transmission is not monitored.” Record redundancy, he adds, is crucial in case of the inadvertent destruction of records. “In the event of a catastrophic natural disaster, human error, or corruption of data by computer malfunction, records would still be preserved,” he says. “There also exists the potential for a breakdown in the lines of communication between the fertility establishment and donors, recipients, and donor conceived individuals — for example, if they go out of business or the donor conceived people don’t know which fertility establishment holds their records.” This, he adds, can be addressed by appointing a regulatory agency to maintain a duplicate copy of all records.

Once Isel began this fight, he knew he’d see it through no matter what it took. If the FDA denied his petition, he’d explore any legal recourse available.

The FDA accepted his petition in September 2016 and opened  a comment period during which the public added positive responses and arguments for proposed changes to public health policy. In March 2017, the FDA announced that it needed more time to review the petition, and in September 2018 the petition “was denied on the erroneous grounds that the FDA doesn’t believe genetic diseases act as communicable diseases and, therefore, it has no reason to regulate the spread and transmission of genetic disease,” Isel says.

Not surprisingly, Isel adamantly disagreed. Undeterred, he hired a licensed federal district attorney to draft a petition for reconsideration, which, he explains, “addresses the issue in great detail, explaining why and how the FDA misinterpreted the language of its own code of federal regulations.” In the petition for reconsideration, Isel’s attorney stated, “The failure of the existing regulations to contemplate the difficulties of progeny such as Isel is precisely why new regulations must be promulgated, particularly when the old regulations divest this new group of their Constitutional Rights to receive and maintain their own personal, health, and genetic information.” She notes that donor conceived individuals weren’t capable of opting in or out of the destruction of their genetic information.

The FDA accepted the petition for reconsideration as “timely and cogent” and opened a new six-month comment period. When that ended on March 18, 2019, the public was no longer able to provide feedback. Once again refusing to be stopped, Isel requested and was granted a reopening of the comment period until the agency reaches a decision. Donor conceived people and allies can support his efforts by taking advantage of the extended comment period and weighing in with their own experiences. These comments are key to persuading the FDA to acknowledge the deleterious effect genetic illnesses may have on donor conceived individuals and the importance of access to records. Individuals who’ve inherited genetic health risks can take this opportunity to educate the agency about the personal cost of lack of access to medical histories. Others, including allies, can voice their concerns as well. Comments can be made anonymously. Access the petition and comment here. (If you have questions about the petition or need help navigating the document, send Isel a message at nick.isel@gmail.com or call him at 630-923-2745.)

In addition to supporting the petition, Isel says, advocates should speak with their state representatives about sponsoring bills in their respective states, as he did in his state of Illinois. Isel lobbied his state representative, Keith Wheeler, who filed Illinois House Bill 2140 in February. If passed, it would require sperm banks in Illinois to retain records, including the name and contact information of every donor, for 50 years following the donation of sperm. It further calls for a sperm donor to “agree in writing that he has no expectation of anonymity with regard to his donation and that his biological child may be provided with his contact information upon request of the child or the child’s parent or guardian if the child is under the age of 18.” The bill is currently in committee.

Although he advocates for state legislation since the FDA has been slow to act, Isel insists that donor anonymity should be banned on the federal level in the interest of public health and wellness. In addition, he says, a federal prohibition would align the FDA’s Code of Federal Regulations “with the FDA’s stated mission and congressional mandate to regulate the fertility industry.” If it were to happen at the state level, he adds, “it would need to be done in every state to prevent ‘reproductive tourism.”Isel has called his efforts to petition the FDA “a game of inches,” acknowledging that there are many additional aspects of donor conception that must be regulated. He notes that there exist no screening procedures as there are with adoption. Furthermore, “There are no limits on the number of offspring sired per donor and no federal civil or criminal penalties established for fertility fraud,” he observes. “There are many more steps that can be taken to make the practice of donor conception more ethical and reduce the systematic injustices inherent in the status quo. Preservation of family medical history is the low-hanging fruit.” He identifies the following additional needs:

Limiting the number of times a donor’s sperm can be used. “Using the same sperm or egg to produce an excessive number of offspring increases the eventual chances of consanguineous unions, lowers the genetic diversity of our species, and, by extension, survivability during a global pandemic or other catastrophe.”

Requiring stricter comprehensive medical and genetic testing of donors. “There are more than 7,000 different types of rare disease, and only about 200 to 300 of those are commonly tested for at the more thorough fertility establishments.”

Mandating reporting of births resulting from donor sperm. “This is the only way to ensure that proposed limits on the number of offspring per donor are adhered to.”

Developing a national registry that keeps track of donors. This is necessary “to prevent reproductive tourism. Base universal guidelines and best practices must be established and agreed upon by all countries.”

Tracking donors’ health and updating parents about changes. “This information has the potential to be life-saving.”

Educating sperm banks and clinics about those impacts and the needs of donor-conceived people. More information about these issues is needed so recipients and donors can be better informed prior to their participation. “The job of the fertility establishment should not be over after a recipient achieves pregnancy; rather its responsibility for the person it helped create should extend throughout that person’s lifespan.”In addition to commenting on the petition, speaking out in other ways can be equally effective. According to Isel, the personal is political. “In a community as underrepresented as this one, simply sharing your own personal story is a form of advocacy because it increases the visibility of the donor conceived community and pushes other people to ask questions they’ve never considered before,” he says. This type of advocacy, he adds, elicits empathy from people who weren’t previously aware of the experiences and concerns of donor conceived people. It doesn’t take a megaphone and a soap box to make a difference. “Many members of the community are performing advocacy work without even realizing it when they casually tell their friends about their backgrounds.”

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.