donor conception

When I was 49 years old, my stroke-recovering

The first Inconceivably Connected Retreat will be held at

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 lead 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 by 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.

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.

As 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 donor conceived people 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.

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 do individuals experience significant distress upon learning they were donor conceived, they 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 with questions about these issues and Dani Shapiro, author of the Inheritance: A Memoir of Genealogy, Paternity, and Love about her own discovery donor conception discovery, to help them recruit respondents. The response rate was 96.6, with 143 demographically diverse respondents, most from the United States, and 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% want to know more about their biological parent’s identity Highlights of the researchers conclusions are that increased attention to counseling is important, anonymous donation should be discouraged, and 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, took time to discuss the research.

Whenever I tell this story, there’s always the same reaction: “I don’t know what to say.” And who am I to blame them? How could they? I wouldn’t either. Sometimes, I still don’t. I’ve always known. From my earliest waking memories, I knew I was special; I knew that he was special too. Because he was a donor, and I was a donor child, in our unusualness I had a bond with this mystery man. But I didn’t know who he was, and he didn’t know I existed. When you’re a donor child with a single mother by choice, something can happen. There’s a certain void. An abyss. Not a crater, because that would imply something was once there. You feel empty. You feel lonely. You didn’t have a choice. In this situation, everybody but you had a choice. Let’s backtrack. It’s April 2018, and I’m lying on my stomach, stretched out on the stone-cold floor of St. Luke’s Episcopal Church, on a retreat. Only three months until my 18th birthday. We were told to take some time to write and meditate. I’d been meaning to write this letter. Now I finally have time to do it. “Dear Dad.” No, that’s not right. Wait, yes it is! “I love you!” “Please love me!” “Please…want me.” Want me, goddammit. I never sent the letter. My 18th birthday arrived. Finally. I reached out to California Cryobank. The deal is that you get three tries to reach out; if the donor never responds, you aren’t allowed to facilitate contact ever again. And the donor has a right to his anonymity. Anonymous until 18. But he still has a right to turn you down when you turn 18. Such a bright age, 18. Shiny, almost. Full of promise and potential. Hope for the future.

Usually, 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 you 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.

Until recently, most people likely haven’t encountered someone who’s been knocked off balance by a DNA test result, so it’s understandable they might not appreciate the magnitude of the impact. But it’s just a matter of time. Mind-blowing DNA revelations are becoming so common that some DNA testing companies have trained their customer service staff representatives to respond empathetically. While those employees may know the right thing to say, here, in the real world, the people around us often haven’t got a clue how it feels — like a punch to the gut. If you’ve become untethered from your genetic family, you might get a second surprise: some of your friends and loved ones may be remarkably unsympathetic, often infuriatingly judgmental, and sometimes even hostile. It’s clear that although DNA surprises have become ubiquitous, social attitudes haven’t kept pace, and a stigma remains.

Author Dani Shapiro has explored family secrets from every angle in an exceptional decades-long writing career that until now yielded five novels and four memoirs. Revisiting those works, it’s tempting to believe everything she’s experienced and written has been prelude to her 10th book, the bestselling “Inheritance: A Memoir of Genealogy, Paternity, and Love.” In an earlier memoir, for example, “Still Writing: The Perils and Pleasures of a Creative Life,” she describes herself in childhood as having been strangely aware unknowns were waiting to be discovered.

Infants and babies taken from their birthmothers tend to perceive that severance as a danger, a threat to their wellbeing. 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.