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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Panel: Privacy, Agency, and Relationships in the Genomic Era: Views from the Public


ELSIcon2022 • Panel • May 27, 2022

Ellen Clayton, Sarah Hagaman, Ayden Eilmus, Zhijun Yin

This panel highlights the transdisciplinary approach our Center for Genetic Privacy and Identity in Community Settings (GetPreCiSe) employs to explore what privacy and identity mean for individuals and groups in the genomic era. While many investigators have asked people their opinions about the implications of advances in genomics using an array of social sciences methods, this panel focuses on the views people volunteer about genetic privacy and identity in a variety of settings—social media, fan culture, and autobiography. Highlighting the work of younger scholars in our Center, we begin with Sarah Hagaman, a Ph.D. student in English, who writes about the challenges to privacy and identity experienced by women with heritable mental disorders in prominent examples of life-writing that span the 20th century. Ayden Eilmus, a recent Vanderbilt graduate in philosophy, anthropology, and Medicine, Health, and Society, writes about the prominence of bodily autonomy as an ethical concern in the fan culture that emerged around the genetics-themed television series, Orphan Black. Zhijun Yin, an Assistant Professor in Biomedical Informatics and Computer Science, analyzed 157,000 comments in subreddits about 23andMe and, finding that the most common and emotionally laden questions involved ancestry, discovering new relatives, and undercutting existing family ties – not health. These innovative approaches to understanding public attitudes toward genetics allow researchers to analyze responses that are unmediated by the hypotheses embedded in surveys, interviews, and focus groups, while enabling us to analyze the cultural assumptions about genetic identity revealed in literature, television, and social media.


genetic identity
Genetic testing and screening

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