Informed consent: Biobank donors should have a say

Journal name:
Nature
Volume:
481,
Page:
443
Date published:
DOI:
doi:10.1038/481443c
Published online

Our findings from a qualitative survey of patients, health-care providers, researchers and other members of the public in Switzerland support suggestions that the views of prospective tissue donors should be taken into account in securing biobank samples (Nature 478, 312313; 2011).

In 2009–10, we interviewed 90 people in focus groups, using fictitious case studies to explore perceptions about the use of human tissue.

Those professionals who preferred blanket consent from donors commonly expressed fears that providing information on tissue use to patients could make them reluctant to donate samples. The general population and patient groups, by contrast, usually wanted to be informed and have the opportunity to give consent.

Among patients, the need to be informed was linked to a wish to be appraised of their medical condition and to be a partner in the therapeutic process. Cancer patients were particularly enthusiastic about the use of their tissues because it helped them to make sense of their illness and could potentially benefit others.

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Affiliations

  1. Lausanne University Hospital, Switzerland.

    • Brenda Spencer,
    • Daria Koutaissoff &
    • Hans-Anton Lehr

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