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Genet Med. 2012 Apr;14(4):461-6. doi: 10.1038/gim.2012.5. Epub 2012 Mar 8.

Taking aims seriously: repository research and limits on the duty to return individual research findings.

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1
Morgridge Institute for Research, Madison, Wisconsin, USA. pnossorio@wisc.edu

Abstract

Most discussions of researchers' duties to return incidental findings or research results to research participants or repository contributors fail to provide an adequate theoretical grounding for such duties. Returning findings is a positive duty, a duty to help somebody. Typically, such duties are specified narrowly such that helping is only a duty when it poses little or no risk or burden to the helper and does not interfere with her legitimate aims. Under current budgetary and personnel constraints, and with currently available information technology, routine return of individual findings from research using repository materials would constitute a substantial burden on the scientific enterprise and would seriously frustrate the aims of both scientists and specimen/data contributors. In most cases, researchers' limited duties to help repository contributors probably can be fulfilled by some action less demanding than returning individual findings. Furthermore, the duty-to-return issue should be analyzed as a conflict between (possibly) helping some contributors now and (possibly) helping a greater number of people who would benefit in the future from the knowledge produced by research.

PMID:
22402758
PMCID:
PMC3940279
DOI:
10.1038/gim.2012.5
[Indexed for MEDLINE]
Free PMC Article
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