"I don't want to be Henrietta Lacks": diverse patient perspectives on donating biospecimens for precision medicine research.
Biobanking
Diversity
Informed consent
Precision medicine
Research ethics
Journal
Genetics in medicine : official journal of the American College of Medical Genetics
ISSN: 1530-0366
Titre abrégé: Genet Med
Pays: United States
ID NLM: 9815831
Informations de publication
Date de publication:
01 2019
01 2019
Historique:
received:
04
01
2018
accepted:
21
03
2018
pubmed:
12
6
2018
medline:
13
3
2019
entrez:
12
6
2018
Statut:
ppublish
Résumé
To determine whether patients distinguish between biospecimens and electronic health records (EHRs) when considering research participation to inform research protections. We conducted 20 focus groups with individuals who identified as African American, Hispanic, Chinese, South Asian, and non-Hispanic white on the collection of biospecimens and EHR data for research. Our study found that many participants did not distinguish between biospecimens and EHR data. However, some participants identified specific concerns about biospecimens. These included the need for special care and respect for biospecimens due to enduring connections between the body and identity; the potential for unacceptable future research, specifically the prospect of human cloning; heightened privacy risks; and the potential for unjust corporate profiteering. Among those who distinguished biospecimens from EHR data, many supported separate consent processes and would limit their own participation to EHR data. Considering that the potential misuse of EHR data is as great as, if not greater than, for biospecimens, more research is needed to understand how attitudes differ between biospecimens and EHR data across diverse populations. Such research should explore mechanisms beyond consent that can address diverse values, perspectives, and misconceptions about sources of patient information to build trust in research relationships.
Identifiants
pubmed: 29887604
doi: 10.1038/s41436-018-0032-6
pii: S1098-3600(21)00097-6
pmc: PMC6289900
mid: NIHMS955666
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
107-113Subventions
Organisme : NLM NIH HHS
ID : R01 LM012180
Pays : United States
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