Ethical dilemmas and data sharing in genetic genealogy

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Abstract

A number of events in 2018-19 have put the data-sharing methods of genetic genealogy into the public spotlight forcing into the open largely undiscussed issues about privacy and the ethics of publishing personal DNA data of oneself and relatives. There is an expectation of reciprocal sharing and genealogical purposes attached to use of these databases. Revelations that the databases have been used by law enforcement agencies, chiefly in the USA, to identify unknown murder victims and to apprehend suspects of violent crimes have led to a growth of anxiety among the customer base, which has been explored through focus group interviews on perceptions of the ethical hazards involved and what remedies may be found. The analysis covers: (1) whether privacy is actually compromised if the genomic data of individuals is not revealed; (2) whether social benefits might justify the actions permitted by certain database providers; (3) perceptions of the risk of ‘mission creep’ if tolerance of such usage for crimes of violence may see it extend to other forms of criminal behaviour, and consequent effects on public support.
Original languageEnglish
Publication statusPublished - 11 Apr 2019
EventPersonal Genomes: Accessing, Sharing and Interpretation - Wellcome Genome Campus Hinxton, Cambridge, United Kingdom
Duration: 11 Apr 201912 Apr 2019
https://coursesandconferences.wellcomegenomecampus.org/our-events/personalgenomes2019/

Conference

ConferencePersonal Genomes: Accessing, Sharing and Interpretation
CountryUnited Kingdom
CityCambridge
Period11/04/1912/04/19
Internet address

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