Anonymity 2.0 Direct to consumer genetic testing and donor conception

Capsule:
Direct-to-consumer genetic testing services for genealogical or ancestry purposes increases the risk 31 of inadvertently finding out that someone was conceived using gamete donation as well as 32 discovering the identity of the gamete donor(s).

Authors:
Pascal Borry, Ph.D., Olivia Rusu, M.Sc., Wybo Dondorp, Ph.D., Guido De Wert, Ph.D., Bartha Maria Knoppers, Ph.D., Heidi Carmen Howard, Ph.D.

Volume 101, Issue 2, Pages 630-632, March 2014

Abstract:

Genetic and genomic services for genealogical or ancestry purposes is a relatively new
development that can undermine the privacy and confidentiality of the participating customers and their relatives. The objective of this article is to discuss how such tests could have an impact on the issues of (i) disclosure of donor conception to donor-conceived offspring (ii) the anonymity debate in donor conception, and (iii) the information available to donor-conceived offspring. Although the number of individuals who have been able to find first degree relatives by using the services of personal genomics companies is still limited, the relative risk of finding out inadvertently that someone was conceived using gamete donation has increased, as well as the risk of identifying family members of a gamete donors or the gamete donor. The distinction between non-identifying and identifying information is becoming increasingly blurred. Once genetic testing enables individuals to infer potential surnames to which they are related, matching this information with the limited nonidentifying biographical information of a donor might drastically reduce the number of individuals that might be the potential donor. Fertility clinics have an important responsibility in informing and guiding recipient couples and donors with regard to privacy risks in the context of donor-assisted conception. The latter deserve to be properly informed about the level of privacy protection they can expect in the era of personal genome testing.

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