An empirical reappraisal of public trust in biobanking research

rethinking restrictive consent requirements.

Wendy Lipworth*, Bronwen Morrell, Rob Irvine, Ian Kerridge

*Corresponding author for this work

Research output: Contribution to journalArticle

23 Citations (Scopus)

Abstract

Collections of human tissue removed from patients in the course of medical diagnosis or therapy are believed to be an increasingly important resource for medical research (biobank research). As a result of a number of tissue-related "scandals" and increasing concern about ownership and privacy, the requirements to obtain consent from tissue donors are becoming increasingly stringent. The authors' data show that members of the general public perceive academic biobank researchers and their institutions to be highly trustworthy and do not see the need for recurrent, project-specific consent. They argue, on the basis of their empirical findings, that we should question the trend, at least in some settings, toward ever more stringent consent requirements for the use of tissue in research. They argue that this approach, while perhaps counterintuitive in the current regulatory environment, can be both ethically and legally sound so long as channels of communication are maintained and third-party relationships are tightly controlled.

Original languageEnglish
Pages (from-to)119-132
Number of pages14
JournalJournal of Law and Medicine
Volume17
Issue number1
Publication statusPublished - Aug 2009
Externally publishedYes

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