Risk terminology in biobanking and genetic research: what's in a name?

Am J Med Genet A. 2013 Aug;161A(8):2095-8. doi: 10.1002/ajmg.a.36069. Epub 2013 Jul 3.


It is well established that the general public has varying interpretations of the term "risk" and the qualifiers associated with it, such as low, moderate, or high. What is less well known is how definition and application of this term impacts recruitment of individuals, particularly for biomedical and behavioral research designed to improve knowledge of and access to innovations in cancer genetics. This Commentary discusses the nomenclature used in bio-behavioral research and the potential for confusion due to divergent meanings of risk and its associated categorizations. We discuss both our experience with recruitment of familial cancer families for a study on perceptions of biobanking as well as lessons learned from published examples where divergent understanding of risk levels, genetic research processes, and interpretation of results between community members and researchers result in misunderstandings for both parties. Ultimately, a critical challenge remains to ensure that accurate and mutually relevant risk terms are used in recruiting research participants and providing genetic results. Achieving this goal requires that regulations, policy, education, and practice change in step with rapid discoveries in genetic research to reduce misinterpretations resulting from lack of common understanding and specificity in risk terminology.

Keywords: biobanking; bioethics; ethics; risk communication.

Publication types

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

MeSH terms

  • Biological Specimen Banks*
  • Genetic Research*
  • Health Communication / ethics*
  • Humans
  • Neoplasms*
  • Risk Assessment*
  • Terminology as Topic*