Privacy in Direct-to-Consumer Genetic Testing.

Abstract

Over the past decade, direct-to-consumer (DTC)6 genetic testing has grown from an intellectual curiosity to a mainstream technology. In 2018, the total number of US customers for DTC genetic testing has been predicted to exceed 20 million. There are many benefits to DTC genetic testing, including increased accessibility of testing at rapidly decreasing costs. A new powerful use of DTC genetic testing data is the identification and surveillance of persons of interest. In 2018, a suspect in the Golden State Killer murder cases was identified by use of DTC genetic testing information, 30 years after the last known crime was committed. Since the break in the Golden State Killer cases, >100 law enforcement investigations are now underway using DTC genetic data. Individuals providing DTC genetic data may not be aware their data are being used for law enforcement activity to identify links with distant relatives. There are currently minimal regulations and ethical standards to guide the appropriate use of consumer genetic databases by law enforcement.\n\nHow have you been involved in DNA testing, privacy, and/or the use of DNA in law enforcement? \n\nMichael T. Risher: I have been litigating challenges to laws that require people arrested on suspicion of a felony to provide DNA samples for inclusion in the government s Combined DNA Index System (CODIS) database since 2009, first as a staff attorney with the American Civil Liberties Union of Northern California and now in private practice. I have written and testified before Congress about the privacy and racial-justice implications of the increasing use of criminal DNA databanks and familial searching.\n\n\n\nTimothy Caulfield: Our team at the Health Law Institute at the University of Alberta has been looking at these issues for decades. This has included work on social issues associated with DTC genetic testing, the collection of samples …