My colleague, Dr. Jennifer Schneider has been conducting an egg donor survey, working with Wendy Kramer, head of the Donor Sibling Registry organization. An article on their study is posted here along with some of their recommendations for egg donation practices:
1. Maintain donor records indefinitely.
2. Develop protocols to contact the donors regularly to update medical information on the donor’s health and information of interest to recipients.
3. Educate the egg donors about the importance of contacting the IVF clinic, even years later, to provide such information
4. Contact recipient families with relevant information provided by the egg donor.
5. Notify donors if any IVF-conceived children are born with genetic abnormalities or potentially inherited diseases as the woman may already have or someday want to have children of her own.
6. Make egg donors as well as recipients, and eventually egg donor children aware of resources for updating and sharing medical information. Until there is a mandatory record keeping system, the Donor Sibling Registry is successfully allowing thousands of families formed via donor conception to establish mutual consent contact and share important genetic, ancestral and medical information.
No more reckless endangerment of egg donors I say! And no more genetic secrets.
- Jennifer Lahl, MA, BSN, RN, is founder and president of The Center for Bioethics and Culture Network. Lahl couples her 25 years of experience as a pediatric critical care nurse, a hospital administrator, and a senior-level nursing manager with a deep passion to speak for those who have no voice. Lahl’s writings have appeared in various publications including Cambridge University Press, the San Francisco Chronicle, the Dallas Morning News, and the American Journal of Bioethics. As a field expert, she is routinely interviewed on radio and television including ABC, CBS, PBS, and NPR. She is also called upon to speak alongside lawmakers and members of the scientific community, even being invited to speak to members of the European Parliament in Brussels to address issues of egg trafficking; she has three times addressed the United Nations during the Commission on the Status of Women on egg and womb trafficking.