Incidental findings of therapeutic misconception in biobank-based research

Genet Med. 2012 Jun;14(6):611-5. doi: 10.1038/gim.2011.50. Epub 2012 Jan 26.

Abstract

Purpose: This article explores expressions of therapeutic misconception (TM) in a deliberative-engagement project focused on the return of aggregate and individual genetic results from biobank-based research.

Methods: We enrolled 45 self-described African Americans in a deliberative-engagement project to explore their attitudes regarding the return of results from biobank-based research. Four groups of individuals participated in four sessions over 2 days that included both educational and focus-group components.

Results: TM was expressed by individuals from both clinics on each day that they met. Three main typological categories of TM were noted: (i) the reasons for consenting to participate in a biobank, (ii) the conflation of research with clinical care, and (iii) mistrust about the meaning of biomedical research findings.

Conclusion: Although trust may explain why some research participants express TM, it was also fueled by mistrust (e.g., a disbelief that a condition described as untreatable was truly untreatable). We also found that TM is not due solely to research participants' misunderstandings but is a bidirectional phenomenon that can be exacerbated by researchers. This finding raises questions about how to engage prospective research participants in the long-term goals of biobank-based research without unintentionally overstating possible short-term clinical benefits.

Publication types

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

MeSH terms

  • Adult
  • Attitude
  • Biological Specimen Banks*
  • Biomedical Research / ethics*
  • Black or African American
  • Educational Status
  • Female
  • Focus Groups
  • Humans
  • Incidental Findings*
  • Male
  • Middle Aged
  • Prospective Studies
  • Research Subjects / psychology
  • Therapeutic Misconception / psychology*
  • Trust / psychology