Donor-Conceived Adults Face Unique Challenges

A recent review focused on donor-conceived people noted that the challenges faced by DC adults in particular have been largely overlooked.

Andrea Vumbaca Photo/Shutterstock

The centuries-old history of artificial insemination has its roots in animal experiments and in particular the breeding and genetic improvement of dairy cattle. The rapid leap from animal experiments to the first successful human pregnancy using frozen spermatozoa in 1953, to today’s burgeoning assisted reproductive technology (ART) industry—projected to reach $45.06 billion by 2026—is vast.

In the case of individuals conceived via donors (using donated sperm, eggs, or embryo), the majority of research has focused on the experience of the parents or the donor-conceived (DC) child, while the long-term well-being of donor-conceived adults has been largely neglected.

Many questions remain about the impact of ART technologies on the growing multitude of people who have resulted from them. A systematic review from the UK, published in June in the journal BJOG: an International Journal of Obstetrics & Gynaecology, turned its attention to adults who were donor-conceived.

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The review, which covered 50 studies including 4,666 donor-conceived participants, aimed to examine the psychological experiences of both DC children and adults. The participant population included people who were conceived using donor gametes (eggs or sperm) in any family structure (including single parents, same-sex, and opposite-sex couples). There were no controls based on the age at which the DC status was disclosed, whether before puberty, during or after puberty, or not at all.

Adult Voices Left Out

Overall, the researchers found that a majority of studies showed “equivalent or better” outcomes for DC people, but a “significant minority” found a higher rate of mental health problems and identity struggles. They noted that the studies and their results were “widely variable” and also varied substantially in terms of quality.

Significantly, 70 percent of the studies collected information on children under 18 years of age, leaving a gap in the data about the adult experience of being DC. The authors noted that “The results …. suggest that the experience of DC adults has largely been overlooked.”

These donor-conceived adults are the ones whose voices may be the most neglected in the ethical, legal, and philosophical discussions surrounding donor conception. A survey conducted by We Are Donor Conceived, in which 87 percent of donor participants were between the ages of 20 and 40, indicates that many of the issues that are most important to donor-conceived adults are not supported in the common practices of cryobanks (sperm/egg banks) and industry regulations.

Issues such as “All donor conceived people should have the option to know how many donor siblings they have”—which 94 percent of study participants agreed with, or “It is important for me to know the identity of my donor”—which 89 percent agreed with. In the United States, laws regulating the cryobank practices vary from state to state, and sperm donors have no legal obligation towards their genetic offspring.

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A number of Facebook groups created exclusively for donor-conceived people, along with websites including We Are Donor Conceived, U.S. Donor Conceived Council, and Donor Conceived Community, have risen in recent years to support adults who are DC by linking them to resources and communities where their experiences can be shared.

Who Am I?

Grappling with questions of identity, “Who am I?” is common among DC adults. Lynne W. Spencer, a masters level psychologist and author of “Sperm Donor Offspring: Identity and Other Experiences,” spoke with The Epoch Times about her own experience of learning, shortly after her dad’s death at age 35, that she was donor-conceived.

“My initial response was relief. So many things made sense all of a sudden ... all of the weird comments and innuendos, the conversations behind closed doors, etc. Over time though, the reality set in. I had been lied to the entire time of my relationship with my dad. We knew he had secrets, but didn’t know what, and had asked him as he was dying what he was keeping from us.

“I also became very angry ... at all of the lies, the secrecy, the inability to know who I was related to, how it affected the relationships in our family, etc. It was a process coming to terms with the reality of my situation, an intense grief process. I was in therapy for two years to help me through this time.

“Finding out who my biological father was was essential to me. I needed to know. I searched for a little over 20 years before I could figure out this puzzle …. An aside...the term ‘donor’ is inaccurate because gamete providers are not donors. In most cases, they earn money for providing their gametes (eggs, sperm).” A self-reported mental health study published May 31, 2021, by Cambridge University Press presented responses to an online survey received from 272 donor sperm-conceived adults and 877 spontaneously conceived adults from around the world.

In contrast to studies focussing on DC children, most of which have found “equivalent or better” psychological outcomes when compared to their non-DC peers, this study showed that responding adults conceived via donor sperm had higher rates of autism and attention deficit disorder, stress, panic attacks, identity formation disorders, nightmares, and drug/alcohol dependency as adults. DC adults also visited mental health professionals at higher rates than spontaneously-conceived adults.

Lack of Accurate Medical History

Another challenge facing DC adults who cannot access their donor information, or may not even be aware that they are donor-conceived, is the lack of access to accurate medical and genetic information. In some cases, the lack of information could be life-threatening.

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Dani Shapiro, author of “Inheritance: A Memoir of Genealogy, Paternity, and Love” described in detail her experience of learning via a DNA test at age 54 that her beloved father, who died when she was 23, was not her biological father. She wrote in her memoir:

“All my life I had been giving medical history that was 50 percent incorrect. Father: dead. Family history: heart disease, stroke, depression, alcoholism (paternal uncle), drug addiction (father), anxiety disorder. I had been carrying burdens that weren’t mine. I was careful with alcohol. I worried when I had a heart palpitation.

“But what was starker and more upsetting was that I had also been unwittingly supplying incorrect medical information for my own son. When he was stricken with a deadly disease as an infant—a seizure disorder so rare that its origins were unknown—I confidently told the doctors that there was no history of seizures in my family. But was that true? Had there been? An entirely different genetic world existed within me - and within my son.” (pp. 87-88)

Anonymous No More?

Legislation regarding sperm donation and other assisted reproductive technology has historically prioritized the rights of the donor and the intended parent(s), over those of the donor-conceived person. The industry has long been shrouded in secrecy. Sperm donors were generally promised anonymity, and according to the BJOD review, for decades parents were advised against telling their child the truth.

An online survey published by We Are Donor Conceived found that, among the 481 survey participants, “80% believe they have been harmed by not knowing the donor’s medical history,” and nearly all (99%) believed DC individuals should have access to their donor’s medical history. Eighty-eight percent believe that “it is a basic human right to know the identity of both biological parents.”

These days, with easy access to commercial DNA testing from organizations such as 23andMe and Ancestry, the situation is rapidly changing, and the promise of donor anonymity can no longer be guaranteed. The likelihood exists that a donor may be identified and contacted by one or more of his or her offspring, even against their wishes.

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ART legislation, which varies from state to state, is slowly evolving to better reflect the current situation. Washington state, for example, passed a law in 2011 requiring that “children who are conceived using gametes from a Washington sperm bank or agency will, upon turning 18, have access to their donors’ medical histories and full names—unless the donor has specifically opted out of being identified.”

How Many Siblings?

Another reality that commercial DNA testing has brought about is the possibility that a donor-conceived person may discover half-siblings that he or she had been unaware of growing up. For some, this may be an exciting and welcome revelation, but for others—especially those whose half-siblings may number into the dozens or even hundreds, and according to U.S. Donor Conceived Council, the revelation can be mentally and emotionally harmful, and may also put the DC person at risk of accidental incest.

Ms. Spencer describes her experience of finding half-siblings, saying:

“[A]s more people did at-home consumer DNA testing, using, for example, 23andMe and Ancestry.com, the half-siblings started rolling in. At this point, we have 74 DNA-confirmed half-siblings in our group. It is a mixed blessing for me. I have met about half of my siblings, and they are sisters and brothers to me.

“They are amazing people, a very interesting group of people ... It is a mixed blessing because I truly enjoy this group of people, but it is also overwhelming to have so many relatives. It is difficult to keep up with that many people and to remember nieces and nephews, and now grandnieces and nephews, names and characteristics. There is the risk of consanguinity because most of the siblings and their progeny don’t know about the sperm donor and who their relatives are.

“I had many conversations with a sperm donor from Detroit who was familiar with my parent’s fertility doctor and is very involved with donor practices in Detroit. He told me that among the donors this doctor used, there was one donor who donated for 30 years and had over 3000 offspring and 15 donors with over 1000 offspring.

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“Yes, that is thousands. And yes, the group with over 3000 offspring would be my group of siblings as we cover 30 years. This is not right. It is totally overwhelming. There need to be regulations limiting the number of offspring from each donor.”

Lynne Spencer (third from left) and five of her 74 DNA-confirmed half-siblings. Courtesy Heather Hundt.

In response to the deep desire of many DC people to identify and, in many cases contact, their half-siblings, the Donor Sibling Registry was founded by donor-recipient mom Wendy Kramer and her son Ryan in 2000 to assist DC people with making genetic connections and has already helped more than 26,000 people connect with their half-siblings and/or donors.

Early Disclosure May Help

In contrast to the culture of secrecy that permeated the early decades of ART, when doctors recommended the child never be told about the circumstances of his or her conception, the discussion has tilted towards favoring early disclosure and openness.

The systematic review cited above included three studies that examined the age of disclosure and concluded that “earlier disclosure was associated with improved psychological well-being and less negative emotions,” and We Are Donor Conceived survey feedback from donor-conceived adults supports these findings, concluding that very early disclosure—before age three—“reduces trauma but not curiosity.”

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Ms. Spencer adds:

“Being donor conceived is like being half-adopted (when one donor gamete is used). Research on adoption and the limited research on donor conceived individuals available, show that it is psychologically healthier to ‘always know’ that you are donor conceived.

A parent can tell their child about who they are, about being donor conceived as one aspect of who they are, in age-appropriate discussions. There are now many children’s books available to help with these discussions. It should just be a part of the child’s narrative.

“Our children are always their own unique beings, whether we use donor conception or not. With donor conceived children, there might be even more characteristics that are different from the family. I encourage all parents to accept and nurture their children for the individual, unique beings they are.”