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

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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 Party's Policy Statement and trust that it will stimulate debate and meet the concerns of researchers and research participants alike.

MEDICIN OCH HÄLSOVETENSKAP Medicinska och farmaceutiska grundvetenskaper Medicinsk genetik hsv//swe
MEDICAL AND HEALTH SCIENCES Basic Medicine Medical Genetics hsv//eng
best practice
biorepository
embryonic stem cell
ethics
induced pluripotent stem cell
policy
return
genetic research
research participants
incidental findings
ethical
framework
working group
return
perspectives
information
duty
recommendations

Knoppers, B. M. (author)
Andrews, P. W. (author)
Bredenoord, A. (author)
Colman, A. (author)
Hin, L. E. (author)
Hull, S. (author)
Kim, O. J. (author)
Lomax, G. (author)
Morris, C. (author)
Sipp, D. (author)
Stacey, G. (author)
Wahlström, Jan,1939Gothenburg University,Göteborgs universitet,Institutionen för biomedicin, avdelningen för medicinsk genetik och klinisk genetik,Institute of Biomedicine, Department of Medical and Clinical Genetics(Swepub:gu)xwahja (author)
Zeng, F. Y. (author)
Göteborgs universitetInstitutionen för biomedicin, avdelningen för medicinsk genetik och klinisk genetik (creator_code:org_t)

By the author/editor: Isasi, R.; Knoppers, B. M.; Andrews, P. W.; Bredenoord, A.; Colman, A.; Hin, L. E.; show more...; Hull, S.; Kim, O. J.; Lomax, G.; Morris, C.; Sipp, D.; Stacey, G.; Wahlström, Jan, ...; Zeng, F. Y.; show less...

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MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Basic Medicine; and Medical Genetics

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