Genetic Privacy and Identity in Community Settings: CEER Final Meeting Administrative Supplement

Genetic Privacy and Identity in Community Settings (GetPreCiSe), is an NHGRI Center of Excellence in ELSI Research (CEER) that, in its first four years, established an environment for multi-disciplinary study that produced innovative ways of studying genetic privacy and identity. Specifically, the center 1) parsed the concept of genetic

privacy into its often conflated constituent components, including: the “right to be let alone,” control and governance of data, and concerns about downstream uses of data; 2) documented and critically assessed the privacy practices of direct to consumer genetic testing (DTC-GT) companies; 3) examined how and why people

trade off personal privacy for other social goods and services; 4) used new techniques to explore how film, television, and social media reflect and affect public perceptions of genetic privacy; and 5) refined understanding of the risk that people will be re-identified from their genomic information. During this time, many developments

raised new issues of privacy and identity for genetics. First is the growth of DTC-GT, which generates genetic information used to trace ancestry, acquire health information, find relatives, uncover parentage, and pursue law enforcement investigations, among other activities. Second, laws and regulations governing data privacy and

security, particularly with respect to genomics, are changing rapidly in the U.S. and abroad. These often conflict and present new challenges as genomic data move across state and international borders. Third, the creation of ever larger cohorts, such as the NIH’s All of Us Research Program, raises further dilemmas because some or

all of the genomic and other data participants provide will be made available to investigators working in a variety of settings and subject to different regulatory regimes. Moreover, participants in these studies may receive research results, which could be deposited in their electronic health records, making this data subject to clinical

regulation and compelling action by clinical providers who may not have the knowledge or infrastructure to respond. Thus, as our understanding of genomics increases, so, too, do its multifarious roles and implications for individuals, families, and society evolve. Given the evolving landscape, in its next four years GetPreCiSe will

address three complementary specific aims: 1) Apply multimodal methods to characterize how social practices affect, and are affected by, evolving notions of genetic privacy and identity and increased availability of data, 2) Characterize how emerging legal and regulatory frameworks influence genomic privacy and identity in the US

and abroad, and 3) Engineer and evaluate new technologies and quantitative frameworks that have potential to intrude on, but also protect, genetic privacy and identity. Recognizing that genetic data processing opportunities and threats are evolving, GetPreCiSe is designed to be a multi-disciplinary center, focused on training the next

generation of ELSI researchers, with sufficient agility to respond to emerging issues. We anticipate these aims will need to be refined, and possibly pivoted, over the next four years and so stand ready to seed new investigations into emerging issues and compose new teams for investigation as needed.