Looking back to look forward: Revisiting the debate on disclosure in donor conception

Reflections on five commentaries from 1997

In 1997, the Journal of Assisted Reproduction and Genetics featured commentary from five researchers on the “controversial” debate of privacy versus disclosure in donor conception.

• Golombok found no clear evidence that either secrecy or disclosure harmed children and called for more longitudinal research on outcomes.

• Weil argued that it's impossible to predict the long-term psychological impact of anonymous donation on all parties involved.

• Shenfield questioned whether a child's theoretical "right to know origins" should supersede parents' privacy rights.

• Klock emphasized the need for comprehensive counseling that explores the advantages and disadvantages of both options and argued that mental health professionals should maintain neutrality.

• Daniels characterized disclosure as assisted reproduction's most contentious issue and noted growing advocacy from donor-conceived individuals seeking access to information about their origins.

The authors raised several concerns that reflected the context of their time. They worried about forcing parents to disclose personal medical information, especially given the stigma around male infertility. They questioned whether disclosure could create additional family tension and anxiety. They feared that disclosure would undermine non-genetic parents' relationships with children. They expressed concern about the difficulties in explaining complex concepts to young children. They noted the intricacy of managing information within extended family networks. They recognized that the quality of parenting matters deeply regardless of disclosure status. They saw the importance of maintaining detailed records about donors. They predicted ongoing tension between offspring rights and donor privacy.

While acknowledging the potential benefits of openness, the authors generally concluded that mandating disclosure for all families would be premature given the limited evidence base and complex individual family circumstances. Instead, they advocated for supporting parents in making informed choices while conducting more research on outcomes about impacts on children's wellbeing.

A Trip Back in Time

It’s worth remembering that their world nearly 30 years ago was radically different from ours now. Sperm donation had been practiced for decades but egg donation was still relatively new. The first "test tube baby" was less than 20 years old. There was very limited longitudinal research on the psychological outcomes of disclosure versus non-disclosure. Most countries practiced donor anonymity, prioritizing the privacy of donors and the autonomy of parents. In the United States, the largely privatized fertility industry operated without federal regulation, allowing clinics to set their own policies, most of which favored anonymous donation. (Fun Fact: The Food and Drug Administration did not begin regulating gamete banks until 2005.)

Technology also shaped disclosure practices. Genetic ancestry testing was non-existent, leaving most donor-conceived people without a means to independently discover their origins. The internet was in its infancy, meaning donors, intended and recipient parents, and donor-conceived people had limited ways of connecting with each other. The voices of donor-conceived people themselves were largely absent from policy and practice discussions.

In the US, a cultural shift toward openness and authenticity in parenting was beginning to gain traction. In the 1990s, single women and lesbian couples were increasingly using donor conception and couldn’t hide the use of donor sperm. This contrasted with the practices of many heterosexual couples, highlighting a divide in disclosure practices based on family type. The adoption community’s push for open records and transparency was beginning to influence conversations about donor conception. Activists highlighted parallels between adoptees and donor-conceived individuals, questioning why donor-conceived people were often denied access to their origins when adoptees were gaining such rights.

In 1985, Sweden had become the first country to ban anonymous donation, a groundbreaking move that framed the rights of donor-conceived people to access information about their genetic origins as a priority. In 1998, the state of Victoria in Australia would enact legislation that mandated the registration of donors and record-keeping to support donor-conceived individuals' access to information upon reaching the age of majority. Thirteen years later, in 2010, only eleven other jurisdictions across the globe would enact similar legislation.

A Plot Twist

What none of these authors could anticipate was how the internet and direct-to-consumer genetic ancestry testing would fundamentally change the context of their debate. In 2000, a donor-conceived child and his mother founded the Donor Sibling Registry, the first mainstream platform for donor-conceived people and their families to find genetic relatives.

When 23andMe launched in 2007, followed by AncestryDNA and others, the possibility of maintaining lifelong non-disclosure essentially disappeared. Suddenly, the question wasn't whether donor-conceived people would learn about their origins but when and how. Parents' ability to control this information evaporated as DNA databases grew and connections between people who share genetic origins became common.

As donor-conceived adults who learned about their origins in childhood, adolescence, and adulthood began sharing their experiences, they illuminated diverse perspectives on donor conception. Some described profound impacts from learning about their origins, while others viewed it as relatively insignificant to their identity and life story. Some sought access to information, while others expressed little interest. Some pursued relationships with genetic relatives, while others preferred to maintain distance.

These varied experiences highlighted that there is no universal donor-conceived experience - each person processes and integrates this aspect of their story in their own way. However, a growing body of research consistently shows that secrecy and late disclosure about donor conception can be harmful to family relationships and psychological wellbeing.

A Reminder for Looking Forward

As we look to the future, perhaps the most important lesson from these papers is humility about prediction. Just as these researchers couldn't anticipate how the internet and genetic testing would transform their field, we must remain humble about the influences of politics, technology, and culture on how our current "best practices" may be viewed by future generations.

Doing everything "right" doesn't guarantee our children won't face challenges or complex emotions about their origins. Parents can create open, loving environments for discussing donor conception while still acknowledging that their children may wrestle with questions of identity, genetic connections, and belonging in ways we cannot fully predict or prevent.

Soon, we will begin to hear from more donor-conceived people who grew up with early disclosure, open discussion of their origins, and sometimes contact with donors and genetic siblings from childhood. These experiences might offer new insights into the impact of transparency, destigmatization, and validation on identity development and might require space for expansive, fluid dialogue about our understanding of family and kinship. Rather than viewing nature and nurture as competing forces, donor conception nudges us to acknowledge and embrace both.

Perhaps the wisest path forward is to continue listening, learning, and adapting. As Goethe reminds us, 'Knowing is not enough; we must apply.' In donor conception, this means not only seeking to expand the evidence base through rigorous research but also using that knowledge to shape ethical practices and compassionate policies. Above all, it requires us to honor the complexity of donor conception and respect the varied ways donor-conceived people process and navigate their identities.

References

Daniels, K. (1997). The controversy regarding privacy versus disclosure among patients using donor gametes in assisted reproductive technology. Journal of Assisted Reproduction and Genetics, 14(7), 373-375. https://doi.org/10.1007/BF02766141

Golombok, S. (1997). Parenting and secrecy issues related to children of assisted reproduction. Journal of Assisted Reproduction and Genetics, 14(7), 375-378. https://doi.org/10.1007/BF02766142

Klock, S. C. (1997). The controversy surrounding privacy or disclosure among donor gamete recipients. Journal of Assisted Reproduction and Genetics, 14(7), 378-380. https://doi.org/10.1007/BF02766143

Shenfield, F. (1997). Privacy versus disclosure in gamete donation: A clash of interest, of duties, or an exercise in responsibility? Journal of Assisted Reproduction and Genetics, 14(7), 371-373. https://doi.org/10.1007/BF02766140

Weil, E. (1997). Privacy and disclosure: The psychological impact on gamete donors and recipients in assisted reproduction. Journal of Assisted Reproduction and Genetics, 14(7), 369-371. https://doi.org/10.1007/BF02766139