research

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

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

Did your upbringing influence your desire to be a social worker and if so, in what way?

I expected to become an elementary teacher growing up and had no idea what social work was until I was in my 20s. However, once I discovered social work, I knew that was what I needed to do. My upbringing was full of moments when I was a little social worker (counseling, advocating, and educating) but I did not know it until later. I was raised by a single father who worked hard to be sure we could pay the rent. All the moms in the neighborhood helped to raise me.

You were already a social worker and well into your doctoral studies when you decided to change the topic of your dissertation. Can you explain why you chose to align your scholarly interests with your NPE experience?

I was. That was quite the detour. I trust my gut with most everything I do. I could not find a way to study school social work (my profession) in a way that felt interesting to me. Once the NPE event happened, I brought it to my committee and they helped me determine that this was the path that fit better for me. Knowing there was little to no scholarly research at that time was a huge attraction to me as well. I agreed and was willing to do the extra work.

How, specifically, did you design your thesis—what were you looking to discover and how did you propose to accomplish that?

I knew I would do interviews for qualitative research. The idea of secrets kept was fascinating. Also, the impact that this discovery had on me and how off balance I felt at middle age got me interested in the impact on identity. The obvious path was discussing the impact on family of origin relationships—living or deceased and on the new family relationships—living or deceased.

You interviewed 51 people. Can you describe those interviews—how you selected subjects and what the interviews involved?

I was a part of one of the private NPE Facebook groups that agreed to work with me then backed out. Another Facebook group offered assistance then stalled. Finally, a woman who was starting another NPE Facebook group offered to assist. I was a member but did not participate for a long time. The process was an advertisement of the study and a link for those interested. The criteria for interviews included having discovered paternity through a direct-to-consumer DNA Ancestry test, living in North America, being over 18.

The first round of interviews was in the fall of 2019, the second round of interviews was in the fall of 2020. Unfortunately, the first round interviews were not used in the final study. It’s a complicated story but every one of those interviews mattered significantly to me and, interestingly, my findings were the same. The interviews were incredible. People were so willing to share their personal stories, so interested in helping other NPEs, and were so vulnerable and lovely. I feel incredibly lucky to have shared some time with all of these amazing individuals.

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.