Genetic ancestry testing and the end of donor anonymity, Debbie Kennett - ESHRE 2020

Over 30 million people around the world have now taken a direct-to-consumer genetic test with companies such as AncestryDNA and 23andMe. These tests can provide information about an individual’s genetic ancestry and health but they also allow the user to opt in to receive matches with genetic relatives. As a result, donor-conceived individuals can now take a DNA test to search for their DNA relatives and identify their genetic parent. Identities can be inferred through networks of genetic cousins even if the donor is not in the database. The chances of success are increasing all the time and sometimes people are matched at the outset with a half-sibling or genetic parent. Donor origins can also be discovered unexpectedly through genetic testing if the child has not been told that they were donor conceived. The massive growth of the consumer DNA databases in the last few years has important implications for everyone working in the fertility industry and for parents who are considering using egg or sperm donation to start or complete their family. DNA testing has effectively ended anonymity for all donors regardless of the legislation in place at the time. How do we deal with the challenges of this new reality? Whose responsibility is it to provide support and counselling for those affected? How should the fertility sector adapt?