Disclosure and management of research findings in stem cell research and banking: Policy statement

Rosario Isasi, Bartha M. Knoppers, Peter W. Andrews, Annelien Bredenoord, Alan Colman, Lee Eng Hin, Sara Hull, Ock Joo Kim, Geoffrey Lomax, Clive Morris, Douglas Sipp, Glyn Stacey, Jan Wahlstrom, Fanyi Zeng

Research output: Contribution to journalReview articlepeer-review

20 Scopus citations

Abstract

Prompted by an increased interest of both research participants and the patient advocacy community in obtaining information about research outcomes and on the use of their biological samples; the international community has begun to debate the emergence of an ethical 'duty to return research results to participants. Furthermore, the use of new technologies (e.g., whole-genome and -exome sequencing) has revealed both genetic data and incidental findings with possible clinical significance. These technologies together with the proliferation of biorepositories, provide a compelling rationale for governments and scientific institutions to adopt prospective policies. Given the scarcity of policies in the context of stem cell research, a discussion on the scientific, ethical and legal implications of disclosing research results for research participants is needed. We present the International Stem Forum Ethics Working Partys Policy Statement and trust that it will stimulate debate and meet the concerns of researchers and research participants alike.

Original languageEnglish (US)
Pages (from-to)439-448
Number of pages10
JournalRegenerative Medicine
Volume7
Issue number3
DOIs
StatePublished - May 2012
Externally publishedYes

Keywords

  • best practice
  • biorepository
  • embryonic stem cell
  • ethics
  • induced pluripotent stem cell
  • policy
  • return of research results

ASJC Scopus subject areas

  • Biomedical Engineering
  • Embryology

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