Gaia Barazzetti1,2, Samuele Cavalli1, Lazare Benaroyo3, Alain Kaufmann4. 1. 1 Institute of History of Medicine and Public Health, University of Lausanne-CHUV University Hospital , Lausanne, Switzerland . 2. 2 Faculty of Biology and Medicine, University of Lausanne-CHUV University Hospital , Lausanne, Switzerland . 3. 3 Faculty of Biology and Medicine, and Ethos-Interdisciplinary Ethics Platform, University of Lausanne , Lausanne, Switzerland . 4. 4 Science-Society Interface, University of Lausanne , Lausanne, Switzerland .
Abstract
AIMS: 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. MATERIALS AND METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
AIMS: 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. MATERIALS AND METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
Entities:
Keywords:
biobank; broad consent; return of results
Authors: Ryan Pysar; Courtney K Wallingford; Jackie Boyle; Scott B Campbell; Lisa Eckstein; Rebekah McWhirter; Bronwyn Terrill; Chris Jacobs; Aideen M McInerney-Leo Journal: Eur J Hum Genet Date: 2021-08-26 Impact factor: 4.246
Authors: Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Mwenza Blell; Isabelle Budin-Ljøsne; Lorraine Cowley; Stephanie O M Dyke; Clara Gaff; Robert Green; Alison Hall; Amber L Johns; Bartha M Knoppers; Stephanie Mulrine; Christine Patch; Eva Winkler; Madeleine J Murtagh Journal: PLoS One Date: 2021-11-08 Impact factor: 3.240