- David Wendler, staff scientist (dwendler@nih.gov)1
- 1 Department of Clinical Bioethics, NIH Clinical Center, Bethesda, MD 20892, USA
- Accepted 6 December 2005
Clinicians and clinical researchers routinely obtain human biological samples and store them for future research. Previously, samples were often stored and used without informed consent. Most investigators thought that the protections in place for research with human participants were not needed for research with human samples.
Recent commentators recognise the importance of informed consent for research with biological samples, but they disagree about when it is required and what types of consent should be obtained. Some argue that people should provide consent for each new study, at the time the study is proposed. Others support prospective consent, but they endorse different sets of options regarding the storage of samples, which investigators can use the samples, and what types of research can be performed.
This profusion of guidance has led to divergent practices,1 2 with one study finding that institutional review boards in the United States recommend “various consent options, all of which are different.”3 Such variation may undermine the scientific value of patients' contributed samples and greatly increase the costs of such research. Assessing whether people's views support one of the recommended options for consent could provide a solution to these problems.
Methods
I searched PubMed (see appendix 1 on bmj.com) for studies published in English that reported the views of individuals on consent for research with human biological samples. This search identified 30 eligible studies.
Results
Individual willingness
The 30 studies provide data on the views of more than 33 000 people (table).4–32 The studies assessed the views of patients, research participants, family members, religious leaders, and the public. The studies yield consistent …
Sign in
Personal subscribers, sign in here:
Article access
Article access for 1 day
Purchase this article for £20 $30 €32*
The PDF version can be downloaded as your personal record
CiteULike
Connotea
Del.icio.us
Digg
Facebook
Reddit
Technorati
Twitter
Stumbleupon
Rapid responses
Latest Responses
The decline in the breast cancer incidence is 1.2% and it is not significant.
Published 10 February 2012
'twas ever thus
Published 10 February 2012
The value of historic human remains
Published 10 February 2012
In Praise of British Literature
Published 10 February 2012
Is real shared decision making possible?
Published 10 February 2012
Most responses
Does anyone understand the government’s plan for the NHS? (17 responses)
Published 17 Jan 2012
Bad medicine: medical nutrition (15 responses)
Published 18 Jan 2012
Shared decision making: really putting patients at the centre of healthcare (7 responses)
Published 27 Jan 2012
Why legislation is necessary for my health reforms (7 responses)
Published 1 Feb 2012
Search for evidence goes on (5 responses)
Published 17 Jan 2012