title: The end of donor anonymity: how genetic testing is likely to drive anonymous gamete donation out of business.
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.
authors.affiliation: Embryology, IVF and Reproductive Genetics Group, Institute for Women's Health, University College London, London, UK joyce.harper@ucl.ac.uk.
authors.forename: Joyce C
authors.initials: JC
authors.lastname: Harper
authors.affiliation: Research Department of Genetics, Evolution and Environment, University College London, London, UK.
authors.forename: Debbie
authors.initials: D
authors.lastname: Kennett
authors.affiliation: Centre for Ethics in Women's Health, Institute for Women's Health, University College London, London, UK.
authors.forename: Dan
authors.initials: D
authors.lastname: Reisel
mesh_terms: D000328:Adult; D003219:Confidentiality / Q000331:legislation & jurisprudence / Q000523:psychology / Q000639:trends*; D030541:Databases, Genetic; D030881:Disclosure; D005260:Female; D005820:Genetic Testing; D005854:Germ Cells; D006801:Humans; D007316:Insemination, Artificial, Heterologous; D018587:Oocyte Donation; D010290:Parents; D014019:Tissue Donors / Q000523:psychology*
keywords: anonymity; disclosure; donor conception; gamete donation; genetic testing