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

NEW YORK Thu Oct 11, 2012 10:27am EDT

A DNA double helix is seen in an undated artist's illustration released by the National Human Genome Research Institute to Reuters on May 15, 2012. REUTERS/National Human Genome Research Institute/Handout

A DNA double helix is seen in an undated artist's illustration released by the National Human Genome Research Institute to Reuters on May 15, 2012.

Credit: Reuters/National Human Genome Research Institute/Handout

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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

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

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Comments (4)
americanguy wrote:
Believe it or not I actually worked at a place where a manager had the duties of retrieving items from the trash cans after work each day, so the boss could see what each employee was doing at their desk. The thought of collecting tissue, gum, or other items to fire people who’s DNA tests show might be sick or get sick, is not only possible, I am sure it is already being done.
Of course I found other employment and resigned. I will not work in a place where people go through the garbage looking for reasons to harass or fire employees.
The real issue is how far will America allow businesses and corporations to go for more profits?

Oct 11, 2012 10:56am EDT  --  Report as abuse
diluded0000 wrote:
Americanguy, I had a buddy who worked security at an adult entertainment place, and had to check the trash cans in the private rooms for, um, protective devices that would indicate illegal activity. That was more about keep the place from getting raided, than the owner being nosy.

And I guess DNA sequences can’t be used discriminate on health or employment. But when I wanted to raise the coverage on my life insurance, they wanted me to get a cheek swab at the doctor. I declined.

Oct 11, 2012 1:03pm EDT  --  Report as abuse
AlkalineState wrote:
DNA testing is fine, but it should be open and transparent.

We pay higher car and home insurance based on risk. Why not higher health insurance? In premiums, Obese people and smokers are being heavily subsidized by regular people. Just because it has always been that way, does not mean we can not change it. And those two things don’t even need DNA tests. But if you have a gene which imparts a 6-fold higher probability of you getting cancer before the age of 50, why shouldn’t you pay a higher premium. You’re a higher risk. Those don’t have to be the exact parameters, but…. you get the idea. Charge according to risk.

Oct 11, 2012 3:50pm EDT  --  Report as abuse
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