Patient perspectives on group benefits and harms in genetic research

A. J. Goldenberg, S. C. Hull, B. S. Wilfond, R. R. Sharp

Research output: Contribution to journalArticle

21 Scopus citations

Abstract

Background: It is unclear how the possible effects of genetic research on socially identifiable groups may impact patient willingness to donate biological samples for future genetic studies. Methods: Telephone interviews with patients at 5 academic medical centers in the U.S. examined how patients' beliefs about benefits and harms to ones racial or ethnic group shape decisions to participate in genetic research. Results: Of the 1,113 patients who responded to questions about group harms and benefits, 61% of respondents indicated that potential benefits to their own racial or ethnic group would be a big or moderate part of their decision to donate a sample for genetic research. 63% of black respondents and 57% of white respondents indicated that they were 'very' or 'moderately concerned' about genetic research findings being used to discriminate against people by race or ethnicity. 64% of black and 34% of white respondents reported that their willingness to donate a blood sample would be substantially reduced due to these concerns. Conclusion: Our findings suggest that a key factor in many patients' decisions to donate samples for genetic research is how those studies may impact identifiable racial and ethnic groups. Given the importance of these considerations to many patients, our study highlights a need to address patients' concerns about potential group benefits and harms in the design of future research studies and DNA biobanks.

Original languageEnglish (US)
Pages (from-to)135-142
Number of pages8
JournalPublic health genomics
Volume14
Issue number3
DOIs
StatePublished - May 1 2011

Keywords

  • Biorepositories
  • Community consultation
  • Ethics
  • Genetic research
  • Group harm
  • Human subjects
  • Informed consent
  • Stored tissue

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

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