Gamete Donations: To Tell or Not To Tell

As new technologies become more prevalent, parents’ decisions around telling or not telling their children about their conception become more complicated

Out of approximately 8 million IVF children presumed to have been born worldwide, likely at least 2 million can be expected to be the result of gamete and embryo donation cycles, involving either donor eggs or donor semen (and sometimes both). Sperm donations long preceded IVF and were already reported in classical times.

Ever since gamete and embryo donations were used in modern reproductive medicine, the question whether the resulting offspring should be advised of how they were conceived has been under discussion. Like so many other issues affected by ethical considerations, morality and Zeitgeist of the moment, opinions evolved and often changed: Before IVF became a clinically successful treatment, intrauterine inseminations (IUIs) with anonymous donor semen was the most commonly used treatment for male infertility. As sperm banks did not exist in those days, semen donor were usually medical students and residents, privately recruited by gynecologists performing the IUIs in their offices. In those days, disclosures about how donor-IUI children were conceived were the exceptions.

With the ascent of IVF, donations became more transparent to the public. Not only did egg donations, suddenly, become possible, and quickly routine, but embryo donation also became standard practice in many IVF centers. And with increasing popularity of all forms of third party donations, the discussion on whether offspring should be informed of their methods of conception gained further urgency.

The Ethics Committee of the American Society for Reproductive Medicine (ASRM) now published a formal Committee Opinion on this subject, which is worthwhile reviewing (Ethics Committee of the ASRM, Fertil Steril 2018;109(4):601-605). The committee reached consensus on a number of points:

  • Disclosure of the use of donor gametes or donor embryos in their conception to donor-conceived individuals is strongly encouraged, though ultimately the choice of the recipient parents.
  • Donors and recipients must receive adequate counseling and provide adequate informed consent about disclosure and information sharing.
    IVF centers must expect inquiries from donor-conceived persons and should develop policies how to respond to such inquiries.
    IVF centers should gather, maintain and permanently store medical and genetic information about donors used in their programs and inform donors and recipient parents in advance how donor information will be released to recipients and offspring.

CHR has been discussing this issue internally for many years. Indeed, especially over the last year, and especially egg donor confidentiality has come up repeatedly, as new face recognition technologies increasingly allow for the identification of individuals from posted photographs on the Web. In one incident, an anonymous third party, for example, identified one of CHR’s egg donors because she used the same photo on CHR’s donor database and another website. Because the other website listed her name (CHR, of course, does not), this third party was able to identify the donor.

New technology also intrudes into the donor process through the many companies that now offer genetic profiling and genealogy information. Only 10 years ago, the likelihood that an offspring would submit to such testing was remote; now, the likelihood that he/she will do this is considerable, thereby greatly increasing the probability that an offspring who was not informed that his/her conception involved a donation will find out in rather undesirable ways.

In view of these highly significant changes in new genetic technologies and capabilities freely available to the public, we consider the newly published Ethics Committee opinion of the ASRM very timely and largely agree with the committee’s consensus. There can be no question that, considering these new developments, couples who conceived with the use of donations, and have not told their offspring how they were conceived, one day, may find themselves in the uncomfortable situation of having their children ask them, why not?

In the meantime, CHR is ready to receive and welcomes inquiries from individuals who were conceived with the help of either gamete (egg or sperm) or embryo donations, and will gladly answer questions, as long as the identity of the donors can remain protected.

Norbert Gleicher, MD, leads CHR’s clinical and research efforts as Medical Director and Chief Scientist. A world-renowned reproductive endocrinologist, Dr. Gleicher has published hundreds of peer-reviewed papers and lectured globally while keeping an active clinical career focused on ovarian aging, immunological issues and other difficult cases of infertility.