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14243_318928475292_541515292_9701050_3340719_n.jpg Rebecca Skloot is an award-winning science writer, and a contributing editor at Popular Science magazine; she's worked as a correspondent for the NPR show RadioLab, and PBS Nova ScienceNOW. Her writing appears in The New York Times Magazine, O: The Oprah Magazine, Discover and others. She teaches in the University of Memphis's creative writing program. Her first book, The Immortal Life of Henrietta Lacks, is forthcoming from Crown on February 2, 2010. It tells the story of HeLa -- the first immortal human cell line ever grown in culture (pictured in the blog's banner) -- the woman those cells came from, and the family she left behind. Click Welcome to Culture Dish for an introduction to this blog and its author.

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« ADA Changes Not Approved Before Obama Innaguration | Main | Testosterone Research and My Latest Washington Post Book Review »

Covert DNA Testing Raises Privacy Concerns

Category: BioethicsBook RelatedGenetic Privacy
Posted on: January 22, 2009 12:38 PM, by Rebecca Skloot

phpFZHmxmPM.jpgThere'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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Comments

1

I hear that if you cross you eyes just so you can see a 3D image in the overlapping double-helices.

It's a schooner!

Posted by: Chris | January 23, 2009 2:09 PM

2

Sorry to miss the point, but I think that's a dude.

Posted by: Sebastian | January 24, 2009 8:33 AM

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