The Emotional Life of Donor Conceived People

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

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

Among the findings:

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

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

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

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

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

Could you summarize the most significant finding of the research?    

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

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

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

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

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

What if anything surprised you about the findings? 

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

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

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

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

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

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

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

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

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

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

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

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

This research is challenging because many folks who find out late in life that they were conceived through donor technologies are hurting and their sense of self has been turned on its head. Given the levels of pain and suffering so many people have experienced, you have to tread very lightly in order to not exacerbate their pain in any way.

J. Wesley Boyd, MD, PhD, is a professor of psychiatry and medical ethics at Baylor College of Medicine. He is also a faculty member in the Harvard Medical School Center for Bioethics. He obtained an MA in philosophy and a PhD in religion and culture, along with his medical degree, at UNC Chapel Hill. He’s taught extensively in the humanities, bioethics, human rights, and psychiatry. His areas of interest include social justice, access to care, human rights, asylum and immigration, humanistic aspects of medicine, physician health and well-being, the pharmaceutical industry, mass incarceration, and substance use. Visit his website at jwesleyboyd.com and follow on Twitter @JWesleyBoydMD @BCMEthics @HMSBioethics. 

BEFORE YOU GO…

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

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