Jan 30

Genetic Screening or Eugenics?

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A start-up company in Silicon Valley has released a test which will allow prospective parents to find out if they are carriers for genetic diseases. The company, Counsyl, tests saliva samples submitted by customers for the genetic mutations associated with 100 rare genetic diseases, including Pompe's disease, which is featured in the film, "Extraordinary Measures."

Besides being easy to do (DIY sampling at home), the test, called the Universal Genetic Test, is also relatively inexpensive- $349 for an individual, $698 for a couple.  The company's  29 year old Chief Technology Officer, Balaji Srinivasan, is quoted in the New York Times as saying, "The goal is not to maximize revenue but to bring the benefits to humanity," he said. "Nothing is more relevant than making sure your child doesn't die from a preventable disease."

 The test, which the company publicized heavily last week  when "Extraordinary Measures" was released, has been offered mainly by fertility clinics, who use genetic testing to screen embryos before implanting them during in-vitro fertilization (IVF).  Embryos which test positive for a genetic disease would not be implanted.

But the test is also available directly to consumers over the Internet.  The proposed advantages of this is that individuals could get information about whether they carry DNA which would increase their risk of having a child with a genetic disease.  The test is limited to only 100 diseases out of thousands of genetic diseases, however.  Also, carrying a marker for a disease does not mean that it would be expressed, or if so, in any significant, noticeable way.  Indeed, according to the New York Times, "Counsyl executives say 35 to 40 percent of people tested are carriers for at least one disease in the test. In about 0.6 percent to 0.8 percent of cases, they say, both members of the couple are carriers for the same disease."

Counsyl's at-home test, and other DNA tests like it, gives consumers direct access to their DNA information without providing genetic counseling about what their true risks would be.   As a result, some people may decide not to have children at all, or may choose to go through IVF so that only "healthy" embryos are implanted.  That sounds dangerously close to eugenics. 

It's not even clear how accurate the test is.   According to the New York Times article, Counsyl has not published any scientific papers about its results, and the test has not been scientifically validated by external reviewers.  The FDA does not generally regulate home-based DNA testing.

While a innovative idea, Counsyl's test brings up many ethical issues.  It may also be a false promise to those who think they will be guaranteed a healthy baby after getting back normal results.  By providing consumers data without context or counseling, this may be a case of giving people more information than they know what to do with.  Or as Albert Einstein said, "A little knowledge is a dangerous thing. So is a lot." 


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