"Still Rather Hazy at Present": Citizens' and Physicians' Views on Returning Results from Biobank Research Using Broad Consent.

Details

Serval ID
serval:BIB_CB6789506CD8
Type
Article: article from journal or magazin.
Collection
Publications
Title
"Still Rather Hazy at Present": Citizens' and Physicians' Views on Returning Results from Biobank Research Using Broad Consent.
Journal
Genetic testing and molecular biomarkers
Author(s)
Barazzetti G., Cavalli S., Benaroyo L., Kaufmann A.
ISSN
1945-0257 (Electronic)
ISSN-L
1945-0257
Publication state
Published
Issued date
03/2017
Peer-reviewed
Oui
Volume
21
Number
3
Pages
159-165
Language
english
Notes
Publication types: Journal Article
Publication Status: ppublish
Abstract
Informed consent and return of research results are among the most debated topics in the biobank literature. We discuss ethical, social, and policy issues associated with returning results in the context of biobanks using a broad consent approach, in the light of data from a qualitative survey of citizens' and physicians' views.
Data were collected through interviews and focus groups to investigate stakeholders' perspectives about a large-scale hospital-based biobank designed to foster biomedical research, including prospective genomics research, and "personalized" medicine.
Both physicians and citizens considered psychosocial impacts as crucial in the assessment of benefits expected from a return of results to biobank participants. In particular, physicians highlighted the possible consequences on the patient-doctor relationship and discussed implications for the concept of "personalized" medicine. Citizens held ambivalent attitudes toward returning individual research results: they defended the "right not to know," while they also considered a sort of "responsibility to know" because of potential implications of results for family members. Moreover, physicians and citizens raised questions about the broad consent model used for inhospital biobank recruitment and expressed their needs for more training in genomics and more information on the biobank initiative.
Stakeholders such as citizens and physicians, who may be concerned as potential biobank participants or as healthcare professionals involved in the management of clinically relevant research results, provide useful insights into several aspects of broad consent and return of results, related in particular to the interface between research and the clinic.

Keywords
Biological Specimen Banks, Biomedical Research, Female, Humans, Informed Consent, Male, Physicians, Precision Medicine
Pubmed
Web of science
Create date
14/02/2017 11:10
Last modification date
03/03/2018 21:26
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