Covert DNA Testing Raises Privacy Concerns

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There's a fascinating story in the new issue of The New Scientist about people's DNA being tested without their knowledge.  Suspicious spouses are sneaking DNA samples from their partner's underwear; men and women are covertly testing their children to find out if they're really biologically related, and several companies have cropped up to help them.  These tests -- and the companies performing them for a fee -- raise a lot of questions about genetic privacy (and come with some really weird photos) ...

"Test Infidelity is just one of dozens of US companies offering to
test DNA taken without the knowledge of the people concerned. Many
firms advertise infidelity testing services or offer 'discreet'
paternity tests. These allow a man to determine whether he is the
father of a child without letting anyone else know what he is up to, or
a woman to tell whether a man is the father of her child without
involving him in the process. While
the total number of stealthy DNA tests being conducted is unclear,
interviews with genetic testing companies indicate that thousands are
being run each year in the US alone."

Test Infidelity's website has detailed instructions for collecting these samples -- some of it creates rather creepy images of what might be happening while unsuspecting spouses sleep:  "Pull six hairs from the
head, eyebrow, or underarm, etc. 
Use tweezers to grasp the hair
slightly above where the hair joins the skin. The hairs can be
pulled out with one quick, swift motion."  The step-by-step semen collection "demonstration" is just ... well ... EEW

What the company's website doesn't address is privacy issues, consent, and other glaring questions that come up when you talk about testing a person's DNA without their knowledge.  It sounds like there's a "regulatory vacuum" surrounding these tests, and whether they're actually legal (not to mention ethical) to perform.  

In October 2007, the New York State Department of Health wrote to the paternity testing firm DNA Services of America in Lafayette, Louisiana, reminding it of the law requiring consent for genetic tests. In addition, documents obtained by New Scientist
under the state's Freedom of Information Law show that over the past
five years the department has written to more than 20 companies telling
them that separate New York regulations demand that paternity or
identity tests must be ordered by someone with legal authority, such as
a doctor or a court official. This may have helped to prevent some
stealthy tests.

Still,
the department has issued no specific warnings about paternity or
infidelity tests run on DNA taken from everyday items without consent.
And New York's Office of the Attorney General, which would prosecute
breaches of the 1996 law, has taken no action against companies running
such tests.

This isn't the first time these companies have waded into ethically dubious territory:  Test Infidelity's parent company, DNA Plus, was one of the first to offer at-home DNA tests for medical information.  Their site fails to mention that there was a major investigation and eventual Senate hearing that determined the services provided by such at-home DNA testing companies were a scam.   The senator who chaired the investigation said, "Clearly consumers are being misled and exploited by
this modern-day snake oil and I am shocked to learn how little the federal
government is doing to help consumers make informed decisions about the
legitimacy of these tests."  And according to the New Scientist, there are questions about the accuracy of these covert tests they're offering as well. 

Will be interesting to see where this issue goes from here.

(Photo credit here for above shot of potentially hot woman so focused on examining some DNA that her eyes are nearly crossed.)

Also:  In other ethically questionable news involving parents and children and science, check out this interesting NYT article about scientists doing research on their children.

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By Sebastian (not verified) on 24 Jan 2009 #permalink