"If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.
New Genet Soc
; 41(1): 23-46, 2022.
Article
em En
| MEDLINE
| ID: mdl-36090688
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 and 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?
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Aspecto:
Ethics
Idioma:
En
Revista:
New Genet Soc
Ano de publicação:
2022
Tipo de documento:
Article
País de afiliação:
Estados Unidos