ELSIcon2022 • Paper • May 27, 2022
Amy McGuire, André Brock, Katrina Ellis, Lynette Hammond Gerido
Technology is changing the ways in which we relate to each other, create knowledge, and share family health history (FHH) but not without risk. FHH is a known risk factor for many common chronic diseases (e.g., cancer, diabetes, etc.). The clinical use of FHH is a low cost, validated, standard of care that captures the joint effect of inherited genetic susceptibility and environment. However, the utility of FHH degrades and becomes a barrier to effective diagnosis and treatment when FHH information is incomplete or inaccurate. Federally, the CDC offers My Family Health Portrait, an internet-based tool which allows the public to compile, update, and print their FHH. Although the tool has useful features, it is being eclipsed by health apps, social media platforms, and genealogy companies, many of which offer services for “free” or at a low cost.
This area is ripe for study of the ethical, legal, and social implications of FHH creation and management. In particular, the high demand for genetic genealogy services among those who identify as Black or African American, paired with sharing findings on social media requires critical inspection of the broader regulatory landscape. On one hand having a more complete family history may improve health care but it may also increase genetic discrimination, profiling, and surveillance through error-prone forensic uses of shadow DNA repositories or unlawful social media scraping. Our paper explores the ways in which Black technoculture addresses the use of genealogy information to help or harm.