ELSIcon2024: Genomics Through the Eyes of Others

ELSIcon2024 • Panel • June 10, 2024 

Authors:

Corresponding Author: Ellen Wright Clayton, JD, MD (she/her/hers) – Vanderbilt University

Panelist: Zhijun Yin, PhD – Vanderbilt University Medical Center

Panelist: Jay Clayton, PhD (he/him/his) – Vanderbilt University

Panelist: Ayden Eilmus – Vanderbilt University

In this panel, we discuss different ways in which people, when unprompted, depict the effect of advances in genomics on families.
(1) The first speaker’s analysis of individuals’ posts about ancestry testing on Reddit showed that discovery of unknown relatives elicited more emotional response than either ancestral origin or health related issues.
(2) The second speaker explores first person narratives detailing their response when genetic testing reveals new, sometimes deeply desired, sometimes unexpected family relationships. We listen to their voices about adoption, assisted reproductive technology, and extramarital relationships, using autobiographical accounts by Dani Shapiro, Ricki Lewis, Linda Ketchum, Nicholas Casey, Eli Baden-Lasar, George Doe, and others.
(3) The third speaker discusses the positive depiction of genomics in two popular television genres, police procedurals and medical dramas. While genomics is an effective tool for diagnosing disease and catching criminals, the shows often emphasize its emotional and relational impact on families.
(4) The final speaker analyzes the 13 highest-grossing films by Black directors of the last decade with genomics content and finds that Black cinema has become a locus where oppression, aspiration, and resilience are depicted and often encapsulated in conventional narratives. Their paper calls for recognition of the presence of diverse perspectives on genetics from one of the most important cultural institutions—commercial films—which can raise consciousness and foster discussion of racial justice in multiple spheres, especially families, kinship, and ancestry. Seeing genomics through the eyes of others—particularly those who are marginalized or othered—rather than through the lens of interviewers’ questions and social surveys adds another layer to our understanding of how people view genomics.

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