An empirical examination of the management of return of individual research results and incidental findings in genomic biobanks

Gina Johnson, Frances Lawrenz, Mao Thao

Research output: Contribution to journalArticlepeer-review

Abstract

Purpose: The purpose of this study was to examine and document the management and return of individual research results and incidental findings to research participants among biobanks. Methods: A comprehensive Internet search was completed to identify biobanks and collect available documents about biobanks and their procedures and policies regarding the return of results. The Internet search was supplemented by an e-mail request to gather further such documents. A total of 2,366 documents were collected for analysis from a sample of 85 biobanks. Results: The major finding of this empirical work is that the majority of the biobanks in the sample do not address the return of individual research results and incidental findings in their publicly available documents. Conclusion: The results suggest that there is a need for more discussion and guidance about the most appropriate ways for biobanks to consider the return of individual research results and incidental findings and generate policies and procedures that address this issue.

Original languageEnglish (US)
Pages (from-to)444-450
Number of pages7
JournalGenetics in Medicine
Volume14
Issue number4
DOIs
StatePublished - Apr 2012

Keywords

  • biobank
  • genomic research
  • incidental findings
  • individual research results

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