World Privacy Forum files public comments and recommendations on pharmacogenomics privacy: all patient-specific PGx research should require certificates of confidentiality

Genetic privacy | PGx – The World Privacy Forum believes that the capability of identifying individuals from subsets of genetic information will expand greatly in the future. In public comments filed with the National Institutes of Health on pharmacogenomics (PGx) research, or research using genetic information to create highly personalized medicine, the World Privacy Forum recommended that all research activities that involve any type of patient-specific genetic information be required to have certificates of confidentiality, whether that information appears identifiable or not. The WPF also urged the NIH to require strong data use agreements to protect individuals’ privacy. The WPF also urged NIH and the Department of Health and Human Services to reinstate the position of “privacy advocate” so as to provide oversight in this area.

Related:

  • For more information, see the genetic section of the WPF Medical Privacy Page.
  • Related note: Executive director Pam Dixon will be speaking about genetic research and privacy at the Institute of Medicine on June 7.