Heads-Up from GenomeWeb: GWAS Data Being Closed from Public View

This was just NOT a headline I was expecting to see as I read my latest GenomeWeb email:

Forensic Breakthrough Stirs NIH to Close GWAS Data from Public View

I mean, so much of what I have been reading and seeing in resources lately is a push to make GWAS data available and possible to analyze. And all the enthusiasm we all felt after GINA finally passed. The headline took me by surprise. But now that I’ve gotten past my initial response, I’ve had some time to look into this a bit more & it isn’t an early April Fool’s joke. Researchers at the Translational Genomics Institute (TGen) and at UCLA used high-density SNP genotyping microarrays to accurately determine if an individuals DNA was included in a mixture of DNA from 200 people or more, even when the individual’s DNA accounted for less than 1% of the total DNA. Before this study, it has largely been assumed that pooled allele frequency data was too complex for any one individual to be identified as a member of the group contributing the DNA. The research and results are beautifully presented in the PLoS Genetics paper that I’ve reference below.

But the privacy implications of this research are huge & already causing major changes in the way that GWAS data is being presented – as indicated by the title of the GenomeWeb article. NIH has altered their GWAS data access policies, and today it was announced that the data from two such studies have been removed from the the UCSC Genome Browser. I am glad that the authors of the research raised their concerns with NIH well in advance of publication, and I’m glad that NIH and other resources are taking the privacy concerns so seriously – I just hope everyone (read popular media) reacts as calmly and intelligently and that this doesn’t cause an unwarranted back-pedaling on all GWAS efforts. I am very anxious to see the public reaction (if any) to this, and how this all turns out. Where do you think this will take us? Do comment with your thoughts!

Here’s where I got my information:
Jiali Han, Peter Kraft, Hongmei Nan, Qun Guo, Constance Chen, Abrar Qureshi, Susan E. Hankinson, Frank B. Hu, David L. Duffy, Zhen Zhen Zhao, Nicholas G. Martin, Grant W. Montgomery, Nicholas K. Hayward, Gilles Thomas, Robert N. Hoover, Stephen Chanock, David J. Hunter, Gonçalo Abecasis (2008). A Genome-Wide Association Study Identifies Novel Alleles Associated with Hair Color and Skin Pigmentation PLoS Genetics, 4 (5) DOI: 10.1371/journal.pgen.1000074

2. National Institutes of Health: Modifications to Genome-Wide Association Studies (GWAS) Data Access (August 28, 2008) http://grants.nih.gov/grants/gwas/data_sharing_policy_modifications_20080828.pdf

3. Forensic Breakthrough Stirs NIH to Close GWAS Data from Public View

(August 29, 2008 By Matt Jones, a GenomeWeb staff reporter) http://www.genomeweb.com/issues/news/149097-1.html?type=pf


4. TGen, UCLA Scientists Reveal Approach for Finding Needle in Genetic Haystack (August 29, 2008 By Andrea Anderson, a GenomeWeb staff reporter) http://www.genomeweb.com/issues/news/149084-1.html


5. TGen scientists uncover new field of research that could help police in crime scene forensics (PHOENIX, Arizona – August 29, 2008) http://www.tgen.org/news/index.cfm?newsid=1204#


6. [Genome-announce] GWAS data access removed from UCSC website (Donna Karolchik, Tue Sep 2 09:06:57 PDT 2008) https://www.soe.ucsc.edu/pipermail/genome-announce/2008-September/000138.html

2 thoughts on “Heads-Up from GenomeWeb: GWAS Data Being Closed from Public View

  1. Pingback: What does GINA mean? | The OpenHelix Blog

  2. Pingback: NHGRI webinar coming up: GWAS | The OpenHelix Blog

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