Broad Consent for Research on Biospecimens: The Views of Actual Donors at Four U.S. Medical Centers

J Empir Res Hum Res Ethics. 2018 Apr;13(2):115-124. doi: 10.1177/1556264617751204. Epub 2018 Feb 1.

Abstract

Commentators are concerned that broad consent may not provide biospecimen donors with sufficient information regarding possible future research uses of their tissue. We surveyed with interviews 302 cancer patients who had recently provided broad consent at four diverse academic medical centers. The majority of donors believed that the consent form provided them with sufficient information regarding future possible uses of their biospecimens. Donors expressed very positive views regarding tissue donation in general and endorsed the use of their biospecimens in future research across a wide range of contexts. Concerns regarding future uses were limited to for-profit research and research by investigators in other countries. These results support the use of broad consent to store and use biological samples in future research.

Keywords: biobanking; biospecimen donor; broad consent; ethical issues; informed consent; survey.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Attitude to Health
  • Biological Specimen Banks / ethics*
  • Data Collection / ethics
  • Donor Selection
  • Humans
  • Informed Consent / ethics*
  • Informed Consent / psychology
  • Living Donors / ethics*
  • Living Donors / psychology
  • Tissue Donors / ethics
  • United States