Scientists' perspectives on consent in the context of biobanking research

Zubin Master, Lisa Campo-Engelstein, Timothy Caulfield

Research output: Contribution to journalArticle

24 Citations (Scopus)

Abstract

Most bioethics studies have focused on capturing the views of patients and the general public on research ethics issues related to informed consent for biobanking and only a handful of studies have examined the perceptions of scientists. Capturing the opinions of scientists is important because they are intimately involved with biobanks as collectors and users of samples and health information. In this study, we performed interviews with scientists followed by qualitative analysis to capture the diversity of perspectives on informed consent. We found that the majority of scientists in our study reported their preference for a general consent approach although they do not believe there to be a consensus on consent type. Despite their overall desire for a general consent model, many reported several concerns including donors needing some form of assurance that nothing unethical will be done with their samples and information. Finally, scientists reported mixed opinions about incorporating exclusion clauses in informed consent as a means of limiting some types of contentious research as a mechanism to assure donors that their samples and information are being handled appropriately. This study is one of the first to capture the views of scientists on informed consent in biobanking. Future studies should attempt to generalize findings on the perspectives of different scientists on informed consent for biobanking.

Original languageEnglish (US)
Pages (from-to)569-574
Number of pages6
JournalEuropean Journal of Human Genetics
Volume23
Issue number5
DOIs
StatePublished - Jan 1 2015
Externally publishedYes

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Informed Consent
Research
Tissue Donors
Research Ethics
Bioethics
Interviews
Health

ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)

Cite this

Scientists' perspectives on consent in the context of biobanking research. / Master, Zubin; Campo-Engelstein, Lisa; Caulfield, Timothy.

In: European Journal of Human Genetics, Vol. 23, No. 5, 01.01.2015, p. 569-574.

Research output: Contribution to journalArticle

Master, Zubin ; Campo-Engelstein, Lisa ; Caulfield, Timothy. / Scientists' perspectives on consent in the context of biobanking research. In: European Journal of Human Genetics. 2015 ; Vol. 23, No. 5. pp. 569-574.
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