results of gene expression
In a provocative article published this week, researchers say they have found a way to link a person's DNA to their anonymous genetic data in some type of public research database. But the National Institutes of Health (NIH), which hosts one of the largest such databases, said that it does not take new measures to prevent someone from using the method of violating privacy. This contrasts with the response of NIH 4 years ago when a similar study prompted the agency to extract genetic information from its public websites.
The question then the relevant studies that compared the DNA variations called single nucleotide polymorphisms (SNPs) in people with and without disease to find disease risk markers. NIH began publishing online SNP results grouped hundreds of people, thinking privacy is not violated. But scientists reported in PloS Genetics as if they had a sample of the DNA of an individual, they could link it to SNP results of that person in a public DNA pool. (NIH and the Wellcome Trust) removed the data from public sites; NIH now only allows researchers to download data pooled studies approved SNP diseases.
These access barriers are less common for a different type of genetic data derived measurements of gene activity by analyzing the levels of RNA in a tissue sample. Because these gene expression data was not thought to be traceable to an individual, the researchers regularly filed RNA results in public databases. An example is Omnibus (GEO) the gene expression database of NIH, which holds nearly 1,000 data sets for testing gene expression on human tissue. Anyone can search for data for people who participated in, say, a study of breast cancer or childhood obesity.
Now it seems that these RNA data may be linked to the DNA of a person after all. Eric Schadt and colleagues at Mount Sinai School of Medicine in New York reported this week Nature Genetics they have developed a technique for generating a SNP personal profile, or "bar code "DNA for an individual based on the results of gene expression. This means that, in principle, if someone had a DNA sample from a participant in a study stored in GEO, they could design a SNP barcode match a sample of GEO, and examine the biological data that participant.
Despite consequences similar to those of 08 PloS Genetics paper a remote but real possibility that the participants of the research could be identified NIH is not as concerned this time. In a statement, the agency said that while leaders of the NIH "examine the conclusions" and its implications, "NIH sees no need to change its data sharing practices at the time." spokesman for the Institut National Human Genome Research Larry Thompson explains that the risks appear low because the group did Schadt requires "a complex statistical tool" and "this is not an easy thing to do." the attitude of the NIH was different there 4 years, he said, because "it was the first time," the NIH and felt that he should "go to extreme caution."
Schadt said he did not expect NIH to impose new limits on access to data. His message, he said, was "to show that in fact there may be no way to protect the privacy" of individual genetic data. Instead of blocking access, said Schadt, NIH must educate people there is a chance that their data will remain confidential and will count on the protections "downstream" such as genetic discrimination laws instead.
Attorney Dan Vorhaus, who runs the blog Genomics law Report, should "the idea that we can promise a complete separation of data and identity is now largely discredited." Vorhaus said that NIH should update its data sharing policy to require that the study volunteers be told that the confidentiality of their genetic data can not be guaranteed. "Participants must understand the risk and be free to take that risk if they wish," said Vorhaus.
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