This Comment advocates for a comprehensive solution to achieve the balance between privacy rights and availability of information. In particular, a strong ban on malicious re-identification and broader anti-discrimination and privacy legislation are necessary to ensure the participants' privacy protection and encourage participation in genomics projects. In addition, the scientific community should establish data standards that can aid in implementation of protective measures to minimize privacy violations. Part II provides an overview of recent developments in genomic technologies and public and participatory genomics. Part III summarizes the privacy issues present in public genomics. Part IV reviews current legislation on genetic information and research participation, including their limitations. Part V proposes a multi-faceted solution, including legislative and research governance solutions to adequately balance participants' privacy with information availability.
Whose Genome Is It Anyway?: Re-identification and Privacy Protection in Public and Participatory Genomics,
San Diego L. Rev.
Available at: https://digital.sandiego.edu/sdlr/vol52/iss3/7