Returning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks

J Law Med Ethics. Fall 2015;43(3):523-8. doi: 10.1111/jlme.12294.

Abstract

Research biobanks are heterogeneous and exist to manage diverse biosample types with the goal of facilitating and serving biomedical discovery. The perspectives of biobank managers are reviewed, and the perspectives of two biobank directors, one with experience in institutional biobanks and the other with national cooperative group banks, are presented. Most research biobanks are not designed, nor do they have the resources, to return research results and incidental findings to participants or their families.

Publication types

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

MeSH terms

  • Databases, Genetic*
  • Disclosure / ethics*
  • Family*
  • Genetic Research / ethics*
  • Genomics / ethics*
  • Humans
  • Research Subjects*
  • Surveys and Questionnaires