"If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.

Title"If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.
Publication TypeJournal Article
Year of Publication2022
AuthorsGordon, DR, Koenig, BA
JournalNew Genet Soc
Volume41
Issue1
Pagination23-46
Date Published2022
ISSN1463-6778
Abstract

Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual's genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant's genetic results, since prevailing U.S. practices treat these as private, controlled by the individual. These individual-based ethics contrast with the family-based ethics- in which genetic information, privacy, and autonomy are considered to be familial- endorsed in UK genomic medicine and by participants in a multi-method study of U.S. research participants presented here. The dilemma reflects a conflict between U.S. legal and ethical frameworks that privilege "the individual" and exclude "the family" versus actual human genetics that are simultaneously individual familial. Can human genetics succeed in challenging bioethics' hegemonic individualism to recognize and place the family at the center of the room where bioethics happens?

DOI10.1080/14636778.2021.2007065
Alternate JournalNew Genet Soc
PubMed ID36090688
PubMed Central IDPMC9454889
Grant ListP20 HG007243 / HG / NHGRI NIH HHS / United States
R01 CA154517 / CA / NCI NIH HHS / United States