European Journal of Human Genetics - Abstract of article: Stakeholders/' perspectives on biobank-based genomic research: systematic review of the literature

European Journal of Human Genetics - Abstract of article: Stakeholders/' perspectives on biobank-based genomic research: systematic review of the literature

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

Alma Husedzinovic^1,2, Dominik Ose³, Christoph Schickhardt¹, Stefan Fröhling²and Eva C Winkler¹

1. ¹Programme for Ethics and Patient-Oriented Care in Oncology, National Center for Tumor Diseases (NCT), Heidelberg University Hospital, Heidelberg, Germany
2. ²Department of Translational Oncology, National Center for Tumor Diseases (NCT), German Cancer Research Center (DKFZ), Heidelberg University Hospital, Heidelberg, Germany
3. ³Department of General Practice and Health Services Research, Heidelberg University Hospital, Heidelberg, Germany

Correspondence: Dr A Husedzinovic, Programme for Ethics and Patient-Oriented Care, National Center for Tumor Diseases (NCT), Heidelberg University Hospital, Im Neuenheimer Feld 460, Heidelberg 69120, Germany. Tel: +49 6221/5635022; Fax: +49 6221/567225; E-mail: Alma.Husedzinovic@nct-heidelberg.de

Received 28 July 2014; Revised 19 January 2015; Accepted 27 January 2015
Advance online publication 4 March 2015

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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 ethical questions 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.