See Appendix for the list of contributors.
Funding considerations for the disclosure of genetic incidental findings in biobank research
Article first published online: 10 JUN 2013
© 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
Special Issue: Variant
Volume 84, Issue 5, pages 397–406, November 2013
How to Cite
on behalf of the Leucegene Project. Funding considerations for the disclosure of genetic incidental findings in biobank research., , , , ,
The authors declare that they have no conflicts of interest.
- Issue published online: 17 OCT 2013
- Article first published online: 10 JUN 2013
- Accepted manuscript online: 10 MAY 2013 08:22AM EST
- Manuscript Revised: 8 MAY 2013
- Manuscript Accepted: 8 MAY 2013
- Manuscript Received: 3 APR 2013
- Genome Quebec
- incidental findings;
The use of biobanks in biomedical research has grown considerably in recent years. As a result of the increasing analysis of tissue samples stored in biobanks, there has also been an increase in the probability of discovering—in addition to the research target—incidental findings (IF). We identified 23 laws, policies and guidelines from international, regional and national organizations that provide guidance or identify the need for the disclosure of IF to research participants. We analyzed these instruments to determine their contemplation of the funding considerations for the disclosure of IF, examining their guidance for who discloses and the extent of researcher responsibilities. We found that the available normative documents provide little guidance to researchers and biobanks for how they should address cost and funding concerns associated with IF disclosure. It is therefore essential that the research and policy communities think through the financial implications of imposing an ethical responsibility to disclose IF. Concerted efforts should be made by policymakers, ethicists, researchers, clinicians and research institutions to develop detailed funding recommendations, potentially universal in application, to aid in the disclosure of IF, and we provide recommendations on steps that can be taken to ensure full consideration of these issues.