Eur J Hum Genet. 2015 Mar 4. doi: 10.1038/ejhg.2015.27. [Epub ahead of print]

Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.

Husedzinovic A1, Ose D2, Schickhardt C3, Fröhling S4, Winkler EC3.

Author information

• 11] Programme for Ethics and Patient-Oriented Care in Oncology, National Center for Tumor Diseases (NCT), Heidelberg University Hospital, Heidelberg, Germany [2] Department of Translational Oncology, National Center for Tumor Diseases (NCT), German Cancer Research Center (DKFZ), Heidelberg University Hospital, Heidelberg, Germany.
• 2Department of General Practice and Health Services Research, Heidelberg University Hospital, Heidelberg, Germany.
• 3Programme for Ethics and Patient-Oriented Care in Oncology, National Center for Tumor Diseases (NCT), Heidelberg University Hospital, Heidelberg, Germany.
• 4Department of Translational Oncology, National Center for Tumor Diseases (NCT), German Cancer Research Center (DKFZ), Heidelberg University Hospital, Heidelberg, Germany.

Abstract

The success of biobank-based genomic research is widely dependent on people's willingness to donate their tissue. Thus, stakeholders' opinions should be considered in the development of best practice guidelines for research and recruiting participants. We systematically analyzed the empirical literature describing different stakeholders' views towards ethicalquestions with regard to type of consent, data sharing and return of incidental findings. Patients are more open to one-time general consent than the public. Only a small proportion desires recontact if the research aim changed. A broad consent model would prevent only a small proportion of patients from participating in research. Although professionals are concerned about a risk of reidentification, patients and the public support data sharing and find that the benefit of research outweighs the potential risk of reidentification. However, they desire detailed information about the privacy protection measures. Regarding the return of incidental findings, the public and professionals focus on clinically actionable results, whereas patients are interested in receiving as much information as possible. For professionals, concrete guidelines that help managing the return of incidental findings should be warranted. For this it would be helpful addressing the different categories - actionable, untreatable and inheritable diseases - upfront with patients and public.