How DTC genetic testing spells the end of donor anonymity

I have written an article with two UCL colleagues, Joyce Harper, and Dan Reisel about the end of donor anonymity. The article has now been made available online prior to publication in the print edition of the journal Human Reproduction. The full title of the article is "The end of donor anonymity: how genetic testing is likely to drive anonymous gamete donation out of business". Here is the abstract:

Thousands of people worldwide have been conceived using donor gametes, but not all parents tell their children of their origin. Several countries now allow donor-conceived offspring to potentially know their genetic parent if they are informed of their donor-conceived status. At the same time, personal genetic testing is a rapidly expanding field. Over 3 million people have already used direct-to-consumer genetic testing to find information about their ancestry, and many are participating in international genetic genealogy databases that will match them with relatives. The increased prevalence of these technologies poses numerous challenges to the current practice of gamete donation. (i)Whether they are donating in a country that practices anonymous donation or not, donors should be informed that their anonymity is not guaranteed, as they may be traced if their DNA, or that of a relative, is added to a database. (ii) Donor-conceived adults who have not been informed of their status may find out that they are donor-conceived. (iii) Parents using donor conception need to be fully informed that their children’s DNA will identify that they are not the biological parents and they should be encouraged to disclose the use of donor gametes to their children. Together, these concerns make urgent a wide-ranging societal conversation about how to best safeguard and promote the interests of donor-conceived offspring and protect the rights of donors. Specifically, there is a need to ensure that new genetic information is communicated in a way that promotes both the safety and the privacy rights of offspring and donors alike. All parties concerned must be aware that, in 2016, donor anonymity does not exist.

The full article is currently behind a paywall but will be made available on the UCL website twelve months after publication.

Despite the rise in the take-up of direct-to-consumer genetic testing there seems to be little awareness outside the genetic genealogy community of the implications of such testing. As we explain in the article DNA tests are increasingly being used to solve unknown parentage cases for adoptees and donor-conceived persons. People are finding half-siblings and even biological parents in the consumer databases. A sperm donor does not have to be in the database to be identified as identification can be made from matches with other close relatives such as second or third cousins.

The article highlights the need to ensure that new genetic information is communicated in a way that promotes both the safety and privacy needs of offspring and donors. Fertility clinics need to develop robust guidelines and procedures that enable them to integrate subsequent genomic data into their existing consent agreements. All parties concerned must be aware that, in 2016, donor anonymity does not exist.

Further reading

- Ten years since the end of donor conception: have we got it right? My report from a Progress Educational Trust meeting held in November 2015.