Or, the panel said, DNA information might be posted on a social networking site “by a malicious stranger or acquaintance,” possibly hurting someone’s “chance of finding a spouse, achieving standing in a community, or pursuing a desired career path.”
The bioethics panel recommends a dozen forms of privacy protection, including that “surreptitious commercial testing” be banned: No gene sequencing or other genetic testing should be permitted without consent from the person the DNA came from, it said. About US 25 states currently allow such DNA testing.
Critics of the lack of genetic privacy thought greater urgency was needed.
“The report lays out a lot of important best practices and does endorse further state and federal regulations, but it doesn’t offer a timeline,” said Jeremy Gruber, president of the Council for Responsible Genetics, a private group that monitors genetic issues. “What will inevitably happen is whole genome sequencing will enter greater use and we won’t have proper regulations to ensure privacy.”
A bill introduced in California, home to many DNA testing companies, by state Senator Alex Padilla would ban surreptitious testing, requiring written authorization from the person the genetic sample was taken from.
It is not clear how many labs are willing to analyze DNA without that authorization. In practice, well-known genetic testing companies such as privately held 23andMe test only saliva samples that are too large to acquire surreptitiously, such as from a drinking glass or licked stamp. “A person would really know that they are spitting into a tube,” 23andMe spokeswoman Jane Rubinstein said.
The full report from the presidential commission is available at www.bioethics.gov.