EXECUTIVE SUMMARY

Ethical considerations regarding disclosure of donor-assisted conception must balance the rights of the parents, donors, and children.

• Parents reluctant to disclose due to social stigma risk children learning the information on their own.

• Providers don’t always raise the issue, feeling it’s beyond their expertise.

• Some countries have laws mandating information be disclosed to donor-conceived children.


Should parents inform their children that they were conceived by gamete or embryo donation? A position statement from the American Society for Reproductive Medicine (ASRM) examines the ethics of this issue.1

“The ASRM Ethics Committee systematically reviews each of our opinions every three to five years, to keep current with the fast-paced nature of reproductive medicine,” explains Judith Daar, JD, chair of ASRM’s ethics committee.

The newly updated opinion on the ethical implications of disclosure to donor-conceived offspring notes the growing use of donor gametes and embryos. It strongly encourages parents to inform donor-conceived children about their genetic provenance.

“Today, 12% of all [assisted reproductive technology] cycles involve the use of donor eggs or embryos, making donor-conceived offspring a significant part of the community of children born of reproductive medicine,” notes Daar.

Increasing sophistication and access to ancestry tracing and sibling identification “alter the disclosure dynamic,” adds Daar. Donor-conceived persons now have the ability to investigate their genetic heritage independent of information provided by their parents.

Fertility counselors are obligated to discuss with clients the importance of disclosure in donor-assisted conception, including the risk they are taking if they choose not to disclose it to their offspring, according to Linda D. Applegarth, EdD, clinical associate professor of psychology at the Ronald O. Perelman and Claudia Cohen Center for Reproductive Medicine at Weill Cornell Medical College in New York City.

“There’s probably no such thing as anonymity anymore, from a genetic standpoint. Anybody can go to the drugstore and buy a DNA test,” says Applegarth. Children might find out the information in ways that are more harmful than if the parents had told them.

“Technology is changing, and so are cultural views that openness is better and secrecy is potentially harmful,” says Applegarth.

Some research suggests that telling children earlier is better.2 “The sooner the child knows about this, the better they manage. It’s something that is part of their story and their history,” says Applegarth.

Some providers don’t address the issue of disclosure, believing it’s outside their realm of expertise. “It behooves providers to get very well-informed on the issues of disclosure and the pros and cons,” says Applegarth.

Many recipients struggle with disclosure due to persistent social stigma. Other important factors also contribute to nondisclosure. “A lot of parents are hesitant to disclose because they might not be perceived as the child’s ‘real’ parent,” says Applegarth. For some, the infertility experience brought on feelings of personal shame and inadequacy that parents don’t want to acknowledge or revisit through disclosure.

Donor conception remains stigmatized largely because it’s rarely discussed openly. “It’s secret, just like adoption used to be secret. But things are changing on this front,” says Lisa Campo-Engelstein, PhD, associate professor at the Alden March Bioethics Institute at Albany (NY) Medical College.

Increasing numbers of gay and lesbian couples using donor conception is one reason, since children will want to know the identity of their genetic mother or father. “We have diverse groups of parents tapping into this, and that’s going to normalize it more and more,” says Campo-Engelstein. “It will become commonplace.”

A number of countries, including Sweden, Austria, and Germany, have prohibited egg and sperm donor anonymity. The laws make it mandatory to disclose at least certain information about donors to children who were donor-conceived. “Before, we were prioritizing the rights of the social parent who wanted to keep it secret. But we are seeing movement toward equaling the playing field,” says Campo-Engelstein.

There is growing recognition that the rights of donor-conceived children are at least as important as the rights of the parents. The mandatory disclosure legislation passed by Australia’s Victoria province was named after a donor-conceived woman who died of a genetic bowel cancer, who was unable to find information on the donor. Another issue that could affect the health of donor-conceived children is the inability to know family medical history. “They may provide incorrect information because they don’t realize that their social parent is not their genetic parent,” says Campo-Engelstein.

The right of the donors who don’t want their information shared also needs to be considered. “One of the reasons we have so many donors in the U.S. is that not only do we pay them, but we also keep the information secret,” says Campo-Engelstein. This is unlikely to change, she adds: “I don’t think we will have laws like that, because we prize individual liberty.”

Other countries struggle to find enough donors in part because potential donors don’t want their identity disclosed down the road or to be contacted by a genetic child. “It’s a question of whose rights we are going to elevate over others. It’s hard, because they are in competition with each other,” says Campo-Engelstein.

Louise P. King, MD, JD, an assistant professor of obstetrics, gynecology, and reproductive biology at Harvard Medical School in Boston, says, “We have slowly come around to the importance and potential benefit of disclosure to children.”

What remains unanswered in the U.S. is whether donors can, and even should, expect anonymity. “Our laws are protective of donor anonymity, but there is a trend toward favoring open donation,” says King. “Leaving the door open for contact once a child reaches majority, as is done in the U.K., is likely the best option.”

The ASRM statement includes this language: “Counseling recipient parents about disclosure and sharing of information is important even for prospective parents who do not intend to disclose the donor conception to their offspring, because the parents may change their plans in the future.”

“The primary ethical consideration, especially in our age of burgeoning genetic knowledge, is a child’s fundamental interest in knowing their biological origins,” says King.

The only argument against disclosure that might overcome the child’s interest is that disclosure could be harmful. “Yet studies have shown disclosure is not harmful,” says King. “A parent’s desire for privacy about the genetic nature of their parentage should not trump the child’s interests here.”

REFERENCES

1. Ethics Committee of the American Society for Reproductive Medicine. Informing offspring of their conception by gamete or embryo donation: an Ethics Committee opinion. Fertil Steril 2018; 109(4):601-605.

2. Hertz R, Nelson MK, Kramer W. Donor conceived offspring conceive of the donor: the relevance of age, awareness and family form. Soc Sci Med 2013; 86:52-65.

SOURCES

• Linda D. Applegarth, EdD, Clinical Associate Professor of Psychology, The Perelman/Cohen Center for Reproductive Medicine, Weill Cornell Medical College, New York City. Phone: (646) 962-3315. Email: lia2004@med.cornell.edu.

• Lisa Campo-Engelstein, PhD, Associate Professor, Alden March Bioethics Institute, Department of Obstetrics & Gynecology, Albany (NY) Medical College. Phone: (518) 262-0239. Email: campoel@amc.edu.

• Judith Daar, JD, Clinical Professor of Medicine, School of Medicine, University of California, Irvine. Phone: (714) 444-4141 ext. 113. Email: jdaar@law.whittier.edu.

• Louise P. King, MD, JD, Assistant Professor of Obstetrics, Gynecology, and Reproductive Biology, Harvard Medical School, Boston. Phone: (617) 667-4030. Email: lpking@bidmc.harvard.edu.