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Is your DNA public property? Warning over lack of genetic privacy in US

25 January 2009
Appeared in BioNews 492

Thousands of people every year in the US are having their DNA collected and analysed without their knowledge or consent, according to a report by the weekly science magazine, New Scientist. In an article published in the 24 January issue, the journal revealed their investigation into the numerous companies offering surreptitious genetic testing and the alarming lack of legal regulation currently in place in the US regarding the covert collection of DNA.

As technology for analysing DNA becomes ever faster and cheaper, commercial services such as paternity testing are in turn becoming cheaper and more widely available. The article in the New Scientist draws attention to the increasing number of US-based companies offering to perform tests on DNA taken from people without their permission. These companies will perform so-called 'discreet' paternity tests without the knowledge of either the father or the child, by analysing DNA collected from toothbrushes, chewing gum or drinking glasses. Similarly, infidelity testing services will analyse DNA extracted from used bed sheets or underwear to confirm or rebuff a wary punter's suspicions that their partner is being unfaithful. Under current US law these services are entirely legal, despite their dubious moral standing.

In 2006, the UK passed a bill - the first of its kind worldwide - outlawing genetic testing on DNA obtained without the individual's informed consent. In the US, no such federal law exists and so New Scientist worked in partnership with the Genetics and Public Policy Center (GPPC) at the John Hopkins University, Washington DC, to investigate whether any state laws provide for genetic privacy. They found that only a handful of states, including Alaska, Florida and New York, had legislation directly addressing surreptitious collection and analysis of DNA. Worryingly, they found no example to date of these laws being used to restrict the activities of the companies offering these services, or of the individuals making use of them.

The detrimental effects that these services can have on the emotional welfare of an individual or an entire family are extensive, particularly where young children are involved. The DNA testing companies provide no psychological support for their customers or their test subjects on revealing their findings. Barry Lenett of DNA Plus, which offers infidelity testing, commented: 'We don't get into the emotional aspect of it. That's for Jerry Springer. We just do the science'. However, New Scientist also warns against the reliability of the results from stealthy testing. There is no certification system for tests on DNA extracted from non-standard sources, even if the company is accredited for tests on DNA gathered using standard methods such as cheek swabs.

There are also wider implications for genetic privacy, particularly in the US where publicised genetic information regarding an individual's health could affect their access to medical insurance.

New Scientist Teams With GPPC To Investigate Surreptitious DNA Testing
Medical News Today |  23 January 2009
Should Genetic Trophy Hunting Be Outlawed?
Reason |  23 January 2009
Sneaky genetic testing
Science Blogs |  22 January 2009
Special investigation: Who's testing your DNA?
New Scientist |  21 January 2009
The Genetics and Public Policy Centre Website
|  22 January 2022
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