NIH Unperturbed by New Way of Peering into Personal Genomic Data
By Jocelyn Kaiser,
Science Insider
| 04. 10. 2012
In a provocative paper published this week, researchers say they have figured out a way to link a person's DNA to their anonymous genetic data in a certain kind of public research database. But the National Institutes of Health (NIH), which hosts one of the largest such databases, says it's not taking any new steps to prevent someone from using the method to breach privacy. That contrasts with NIH's response 4 years ago, when a similar study prompted the agency to pull genetic data from its public Web sites.
The issue then involved studies that compare DNA variants called single nucleotide polymorphisms (SNPs) in people with and without an illness to find disease risk markers. NIH had begun posting online pooled SNP results from hundreds of people, thinking privacy would not be breached. But then scientists reported in PloS Genetics that if they had a sample of an individual's DNA, they could link it to that person's SNP results within a public DNA pool. NIH (and the Wellcome Trust)
removed data from public sites; NIH now allows only approved...
Related Articles
By Anna Rogers, Mother Jones | 06.19.2026
By Rebecca Simkin, BioNews | 06.29.2026
The US Food and Drug Administration (FDA) is allowing biotech company Regenxbio to reapply for licensing of a gene therapy for Hunter syndrome, in a reversal of its previous decision. Hunter syndrome, or mucopolysaccharidosis type II (MPS II), is a...
By Marisa Flook , BioNews | 06.29.2026
An anti-ageing gene therapy not approved by the US Food and Drug Administration (FDA) is set to be offered by an American company at overseas clinics outside of US jurisdiction.
The treatment, developed by Minicircle from Austin, Texas, uses a...
By Georgia Michelman, Science | 06.18.2026