News Release: WPF asks National Institutes of Health for Changes to Its Draft Genomics Data Sharing Policy


San Diego, November 18, 2013 —  WPF filed comments today asking The National Institutes of Health to make changes to its draft Genomic Data Sharing Policy for sharing, for research purposes, of large-scale human and nonhuman genomic data. The World Privacy Forum comments focus on human genomic privacy.

“We are most concerned in our comments that the NIH find a full range of privacy protections for genomic data to be used for research. We are interested in a full arsenal from encryption to certificates of confidential to civil and criminal penalties for misuse. Consent — as alluring as the idea is — cannot by itself carry all of the privacy water,” said Pam Dixon, executive director of the World Privacy Forum.

Our key points in the comments are:

  • Certificates of confidentiality should be required for all genetic researchers, as well as the repositories the genomic data is held in. We request that the policy be amended to say that.
  • We observe that there are many available methods that protect the confidentiality of data subjects, including encryption, certificates of confidentiality, criminal and civil penalties, data use agreements or contracts that give a data subject the ability to pursue legal remedies against those who misuse data, denial of research funds to data misusers, and other measures. These other methods may in some circumstances provide better options and strike a better societal balance between privacy and research interests than a sole reliance on explicit consent.
  • In the comments, we note that we have considerable concerns about the long-term identifiability consequences of open repositories of genomic data. The trend toward greater identifiability of smaller and smaller portions of an individual genome will continue and may accelerate. We anticipate the eventual creation of a central databank with genomic information on everyone. Informed consent should not act as a privacy fig leaf of protection when other measures would be more effective, particularly in the long run.

We also make several technical suggestions regarding systems of records and other items. The World Privacy Forum the leading privacy organization in the United States working on substantive genetic privacy issues.

Document links:

For more information contact: 
World Privacy Forum
(760) 712-4281