"If I could in a small way help": motivations for and beliefs about sample donation for genetic research

J Empir Res Hum Res Ethics. 2011 Jun;6(2):57-70. doi: 10.1525/jer.2011.6.2.57.

Abstract

Human genome research depends upon participants who donate genetic samples, but few studies have explored in depth the motivations of genetic research donors. This mixed methods study examines telephone interviews with 752 sample donors in a U.S. genetic epidemiology study investigating colorectal cancer. Quantitative and qualitative results indicate that most participants wanted to help society, and that many also wanted information about their own health, even though such information was not promised. Qualitative analysis reveals that donors believed their samples contributed to a scientific "common good"; imagined samples as information rather than tissues; and often blurred distinctions between research and diagnostic testing of samples. Differences between African American and White perspectives were distinct from educational and other possible explanatory factors.

MeSH terms

  • Adult
  • African Americans
  • Aged
  • Aged, 80 and over
  • Attitude to Health*
  • Case-Control Studies
  • Colorectal Neoplasms
  • Culture*
  • Diagnostic Techniques and Procedures
  • Epidemiology
  • European Continental Ancestry Group
  • Female
  • Genetic Research*
  • Health
  • Helping Behavior*
  • Humans
  • Information Seeking Behavior
  • Interviews as Topic
  • Male
  • Middle Aged
  • Motivation*
  • Social Justice
  • Social Values*
  • Tissue Donors / psychology*
  • United States