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Citing privacy concerns, U.S. panel urges end to secret DNA testing

By Sharon Begley

NEW YORK (Reuters) - They're called discreet DNA samples, and the Elk Grove, California, genetic-testing company easyDNA says it can handle many kinds, from toothpicks to tampons.

Blood stains from bandages and tampons? Ship them in a paper envelope for paternity, ancestry or health testing. EasyDNA also welcomes cigarette butts (two to four), dental floss ("do not touch the floss with your fingers"), razor clippings, gum, toothpicks, licked stamps and used tissues if the more standard cheek swab or tube of saliva isn't obtainable.

If the availability of such services seems like an invitation to mischief or worse - imagine a discarded tissue from a prospective employee being tested to determine whether she's at risk for an expensive disease, for instance - the Presidential Commission for the Study of Bioethical Issues agrees.

On Thursday it released a report on privacy concerns triggered by the advent of whole genome sequencing, determining someone's complete DNA make-up. Although sequencing "holds enormous promise for human health and medicine," commission chairwoman Amy Gutmann told reporters on Wednesday, there is a "potential for misuse of this very personal data."

"In many states someone can pick up your discarded coffee cup and send it for (DNA) testing," said Gutmann, who is the president of the University of Pennsylvania.

"It's not a fantasy to think about how, without baseline privacy protection, people could use this in a way that would be really detrimental," such as by denying someone with a gene that raises their risk of Alzheimer's disease long-term care insurance, or to jack up life insurance premiums for someone with an elevated genetic risk of a deadly cancer that strikes people in middle age.

"Those who are willing to share some of the most intimate information about themselves for the sake of medical progress should be assured appropriate confidentiality, for example, about any discovered genetic variations that link to increased likelihood of certain diseases, such as Alzheimer's, diabetes, heart disease and schizophrenia," Gutmann said.

The commission took on the issue because whole genome sequencing is poised to become part of mainstream medical care, especially by personalizing medical treatments based on a patient's DNA.

$1,000 GENOME

That has been driven in large part by dramatic cost reductions, from $2.5 billion per genome in the Human Genome Project of the 1990s and early 2000s to $1,000 soon. Several companies, including Illumina Inc. and Life Technology's Ion Torrent division, sell machines that can sequence a genome for a few hundred dollars, but that does not include the analysis to figure out what the string of 3 billion DNA "letters" means.

A three-year-old federal law prohibits discrimination in employment or health insurance based on someone's genetic information but does not address other potential misuses of the data. Without such privacy protection, said Gutmann, people may be reluctant to participate in genetic studies that do whole genome sequencing, for fear their genetic data will not be secure and could be used against them.

Recommendations from such panels are not binding but have been used as the basis for policy and legislation.

One scenario the panel offers is a "contentious spouse" secretly having a DNA sample sequenced and using it in a custody battle "as evidence of unfitness to parent," perhaps because the DNA showed a genetic risk for mental illness or alcoholism. There are no federal laws against that.

Or, the panel said, DNA information might be posted in 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 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 insure 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," said 23andMe spokeswoman Jane Rubinstein.

The full report from the presidential commission is at www.bioethics.gov.

(Reporting by Sharon Begley; editing by Bill Berkrot and Cynthia Osterman)

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