Update: The study has closed and is no longer actively recruiting participants.

By Kara Rubinstein DeyerinThe 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.

An MPE belongs to one of three primary communities:

• Non-paternity event (NPE): those conceived from an extramarital affair, tryst, rape or assault, or other circumstance
• Assisted conception: those conceived from donor conception (DC), sperm donation, egg donation, embryo donation, or surrogacy; and
• Adoption: those whose adoption was hidden, orphans, individuals who’ve been in foster care or are who are late discovery adoptees (LDA), etc.

United, our communities have a stronger voice to effect change in society—to promote laws to protect our rights and encourage a better understanding of our experiences.

Right to Know focuses on three pillars to support people with an MPE: education, mental health, and legislation. Adoptees are trailblazers in many of these topics, but there’s still much work to be done. Many people with an MPE feel powerless, and through our work, we hope to empower them. Advocacy and helping others often facilitates healing.

People with an MPE often are not represented in lawmaking in the U.S. In fact, some of us clearly have no rights in the eyes of the law. Right to Know advocates for changes in laws to ensure people with MPEs are represented and our fundamental right to know our genetic identity is established legally. Our legal advocacy starts with your participation at a grassroots level. We are working to pass broad-based fertility fraud legislation with criminal penalties for all types of fertility fraud along with a civil cause of action allowing for both parents and offspring to bring a lawsuit. We also encourage an additional criminal penalty and a loss of licensure for doctors who use their own sperm to inseminate patients. We’ve teamed with legislators in Iowa, Michigan, New York, Oregon, and Washington to pass such legislation, with Nevada and Georgia soon to follow. We also partner with adoptee rights groups to see how we can help enact laws to ensure access to original birth certificates.

As part of RTK’s mental health initiative, we hold a monthly Community & Connection event on the first Sunday of the month at noon pacific time with a licensed therapist to discussed issues pertinent to MPEs. Past topics have included “A Look at Loss and Grief in MPEs,” “The Importance of Finding your Tribe and Feeling Supported,” and “Reaching Out to Bio-Family and Coping with the Response.” The next Community & Connection is “Identity and MPEs,” with Jodi Klugman-Rabb on Sunday, July 11. To register, send an email to RSVP@RightToKnow.us.

RTK also operates a hotline number, 323-TALK-MPE, to help people find resources to process their MPEs and pair them with someone who’s had a similar experience. To facilitate access to licensed professionals who have experience working with people with an MPE, we provide a directory so you can find a therapist to help you. We also work closely with DNAngels to help people find their genetic family.

Each month, usually on the third Sunday at noon Pacific time, RTK sponsors a webinar with world-class speakers on a topic related to MPEs. Past topics have included “Interacting with Narcissistic Moms” and “Family Members’ or Societal Perceptions of Ancestral DNA, Race, & Identity.” Find Information about upcoming webinars on the website.

RTK strives to educate the public on the complex intersection of genetic information, identity, and family dynamics through various media projects. In the fall it is launching an MPE Education website that will offer a variety of classes related to misattributed parentage.

Due to the newness of DNA testing and the surprising consequence of discovering misattributed parentage this way, there’s very little data available about MPEs, the rate of occurrence, demographics, and what we need to heal. Right to Know is excited to partner with Anita Foeman, PhD, and Bessie Lawton, PhD, from the DNA Discussion Project to gather information on MPEs through an online Institutional Review Board (IRB)-approved survey that aims to understand how MPEs affect individuals,  their family relationships (both preexisting and new), and their health and determine whether sufficient recourses and access to resources exist to cope with such a discovery. Your voice matters. Please participate in this groundbreaking research to ensure people with MPEs receive the help they need in the future. If you’d like to help or need more information about Right to Know’s initiatives, send an email to info@RightToKnow.us or find us online. Find us as well on Twitter and Instagram @righttoknowus.Deyerin is a non-practicing attorney and co-founder of Right to Know. She discovered three years ago that the man named on her birth certificate was not her biological father. With the click of a mouse, she went from being half black to half Jewish. She’s a mom, wife, writer, cook, knitter, and connoisseur of all things human. Follow her blog about her own journey, Unexpectedly Jewish. BEFORE YOU GO…

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

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Severance speaks with Gina Daniel, DSW, LCSW, whose personal experience—her discovery that she’s an NPE (not-parent-expected)—has redirected her professional goals, putting the spotlight on the challenges and needs of individuals with misattributed parentage experiences. She recently earned her doctorate, her dissertation a study of the NPE experience, and she’s working to help create awareness among mental health professionals and improve their knowledge about the specific needs of people who’ve discovered misattributed parentage.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.

Can you summarize your overall findings?

To summarize my research, there appears to be a significant psychological blow to participants discovering paternity/family secrets through a direct-to consumer (DTC) DNA ancestry test. There’s a struggle to incorporate the new information. Half of the participants in my research sought mental health counseling in order to cope. Personal identity is changed as a result (incorporating new family, concerns with previous family, health issues, and ethnicity changes); resemblance to family is a significant component within this experience; participants prefer the truth over not having the truth (despite the emotional difficulty); and social supports (e.g. Facebook groups) are helpful and after a certain point appear to become a ‘pay it forward’ place. In my research I called this ‘healing through helping.’

You’d already had an NPE experience, and although it was relatively new, you’d had some time to process your emotions. Was there anything revealed in the interviews that surprised you?

I had time to process and discussed with a therapist as well. The similarities in the emotions that most people shared mirrored my experience. I was surprised at the sense that some of this felt universal—deception, lies, shock/surprise, understanding, hurt—and all mostly at middle age.

What, if anything, would you describe as universal in the experience of your interviewees?

Similar emotions that erupt suddenly when the discovery is learned and then occasional eruptions of the same emotions, maybe less intensely, over time. Also, the idea that almost everyone feels alone at the beginning of this process—as if they are the only ones going through this.

If you had to choose the top three most difficult challenges or most difficult emotional issues experienced by NPEs what would they be?

Shock/surprise, anger, and feeling alone. Also the rejections from new family that happen for many.

Can you give an overview of the kinds of issues NPEs have with respect to identity and what are some strategies for dealing with them?

To be completely honest, I don’t feel I went as deeply as I should have for the identity questions. When I asked questions about if identity changed, the vast majority said yes. When I pressed the “yes” responses further with “how,” I was often met with pause in thought. However, ethnicity and health information were the most often described areas where identity shifts occurred. Seeking information about new family was necessary in order to understand more about self. I included resemblance into this section as this topic came up so often in interviews as related to not looking like family of origin, then looking like new family, children looking like new grandfathers, etc.

As far as strategies, I don’t think I have any to offer based on what was provided through the research outside of have a professional genetic counselor or mental health professional to talk with while processing these complex shifts.

This is a complex, multi-part question. I’ve noticed that for many NPEs, this experience seems to become central, becoming almost the centerpiece of their identity and front and center in their lives in an ongoing way. Is there a danger in that—in lives being overtaken in a sense by this experience?

Like with many things, it depends on how much it impacts your functioning in your typical life. I’m not sure how it can not become a central feature of a life when so much of what you’ve known about yourself is upended while doing a recreational activity. For some, how do you reconcile trust again after this occurs?

What can individuals do to help integrate the experience so it’s not overwhelming and doesn’t come ultimately to define them?

So, it can be overwhelming and create a new definition of themselves. However, the idea is that it is now an expanded definition. You are what you were and what you now know. It’s realizing that piece, I think, that’s helpful as people process the losses and grievances along the way with this experience.

Is there an end goal of assimilating this experience, or will it always be front and center? 

In my opinion, assimilating is the goal. What we cannot control, we cannot control. People may not choose to have us in their lives, and we have no option but to accept that. People may be deceased, and we get no answers to the questions we have about our existence. We again have to find a way to accept that. These are not easy tasks, but to remain in a place of anger and sadness only steals your life from you.

Many NPEs belong to support groups on Facebook and perhaps elsewhere. Can you comment on the benefits and also the limitations?

There are significant benefits belonging to a healthy group of people sharing similar experiences with something brilliant to offer us in the way of hope, support, or suggestion when needed. This is what it is to be a social human finding your ‘tribe.’ However, the limitations are when professional help is needed and people use Facebook—or when people on Facebook want to be professional mental health professionals doling out advice and are not qualified.

You wish to help educate mental health professionals about how to better treat NPEs. What are the biggest needs in that education?

Awareness of this experience to start with.

Therapists are trained to work with clients with issues related to grief, loss, shame. What are they lacking that prevents them from being able to better help NPEs?

We all hope the therapists we work with understand how to work with grief, loss, and shame, but judging from my research, many NPEs seeking mental health help were met with flippant comments minimizing their experiences. That tells me that perhaps they are not viewing this experience from the lens of grief, loss, and shame. The impact of secrets on families is an area to understand more, as well as all the ways an individual can become an NPE. This isn’t as simple as ‘mom had an affair’ in a lot of situations. I also think we are still learning the best ways to help NPEs therapeutically, so I am not in any way indicating this answer as a full and complete response to your question.

Until therapists are better trained or until there’s truly a network of therapists specializing in these issues, what advice do you have for individuals who are seeking mental health care?

Just meet with a professional you’re comfortable talking to, who is listening and seeking to understand and help. If the first one doesn’t fit, move on until you find one that clicks for you.

What should people look for in a therapist and how might they be able to tell when a therapist will not be right for them?

Someone who is not minimizing your experience. It’s completely ok to interview a therapist prior to meeting them. Ask them if they have heard of NPEs, ask if they have worked with someone who has been adopted, ask about their experience with family therapy and family secrets in therapy. If you don’t like them on the phone, move on. I suggest if you’re on the fence with a therapist (after meeting once), try them three times. If after three times it’s not helping anything, move on.

I understand you’re interested in doing research on siblings who are discovered by NPEs. I’m wondering if you have a sense yet of what reasons might keep those siblings from being accepting of NPEs?

So this is personal. I did not indicate my interest in this in my research study and am not 100% I am going to do this, but I think about it a lot. Siblings, at this age, are typically peers and have information that can help us better understand the new parent and health information. We can potentially grow old with them and have that extra layer of familial connection. However, they’re not always willing to accept the new sibling no matter what the situation was, and this can be very difficult for an NPE to cope with. Inheritances, sibling positions within the family, and loyalties to other family appear to be reasons to keep away. Like I said, this is a personal one for me so I will tread lightly as I move forward. It may also be a challenge to find siblings willing to open up unless I were to go through an NPE, so I imagine the information would be skewed toward acceptance. Still, it could be interesting to get their perspective. Maybe I am totally off base and am taking my rejection of two younger siblings too hard!

 Can you tell me about the support guide you’re working on and your hopes for it?

Well, it’s currently evolving into a blog I believe. Perhaps the blog will develop into the support guide in paper form one day. Another NPE and I are working on it currently. Our hope is that it is a helpful tool for everyone—NPEs new and existing, family members, mental health professionals. You’ll hopefully be hearing about it soon. We hope to get it really moving this summer.

 What are the most important aspects of this experience that researchers need to explore?

Well, I just completed someone’s study questionnaire from West Chester University in Pennsylvania that looks like quantitative research, so that makes me excited thinking we can get some of that info out there. Within my study, I suggest future research considerations to include qualitative research with biological mothers, longitudinal studies with NPEs, and consideration of if/how the new medical information changes behavior once misattributed paternity is uncovered.

What haven’t I asked you that you think people should know either about the NPE experience or about the work you’ve done related to it?

This experience has a spectrum of response. NPEs are many in our world, always have been, and will continue to occur. Learning about your NPE status through a direct-to-consumer DNA ancestry test is perhaps an unintended consequence to a recreational test for a most popular hobby. This is also a first world issue accessed primarily by Caucasian individuals who can afford to test for fun. The impact on identity is significant.Gina Daniel is a licensed clinical social worker. She has worked in public education as a school social worker for more than twenty years and also works in her private practice in central Pennsylvania primarily focused on individual and family work. Daniel discovered her NPE status in June 2018 and subsequently completed her doctoral dissertation with a focus on unexpected paternity discoveries through direct-to-consumer DNA ancestry testing.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.

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.