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The era of functional genomics has allowed scientists to analyze huge amounts of data on cellular activity in disease and health. The more this data is shared between labs, the more power scientists have to find disease-related genes.
This widespread sharing of functional genomics data, however, creates an enigma as it also makes it more difficult to protect individuals’ genetic privacy.
In a new report, a team of Yale scientists has developed a way to protect people’s private genetic information while preserving the benefits of free exchange of functional genomics data among researchers.
The report, published November 12 in the journal Cell, was led by senior author Mark Gerstein, Albert L Williams professor of biomedical informatics and professor of molecular biophysics and biochemistry, computer science, statistics and data science, and first author Gamze Gursoy, postdoctoral researcher in Gerstein’s lab.
“Genetic information is the most fundamental information of all,” Gerstein said. “If someone has access to your financial information, you can still get a new credit card. But once a genome is in a database, you’re locked out, as are your children and grandchildren.”
The widespread use of genetic testing by services like Ancestry.com has already allowed people to identify relatives they were unaware of. However, the huge genetic databases collected by scientists can potentially be used for less favorable uses as well.
For example, a person with malicious intent and possession of DNA taken from a cup of coffee could theoretically identify a person who has HIV if that person had previously participated in an AIDS study. In addition to the potential threat of blackmail, life insurance companies may refuse coverage for that person. There are similar risks for others who are, for example, at a high risk of developing cancer.
The privacy risk spans generations. Since individual genomic data is never erased, the grandson of a man with schizophrenia may one day face discrimination due to his inherited genetic predisposition to develop the disease.
There are also risks to society. For example, hostile foreign governments could hack databases for potentially harmful genetic information on US citizens. Or authoritarian governments could use some data, as in so-called eugenic programs, to identify and harm individuals with “undesirable traits”.
“Genetics has a troubled history,” Gerstein says.
To overcome these privacy threats, Gursoy and Gerstein developed a method to quantify the amount of data from the studies that could “leak” or contain information that identifies the people in the study. They were then able to “sanitize” or block access to small amounts of individually identifiable genetic information, while preserving the vast majority of the data for use by researchers.
“We can protect individual privacy by encouraging people to participate in genetic studies that are undeniably good for society,” Gerstein said.
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