genomics & society

Posts Tagged ‘ethics’

The Limits to Fiction

Posted by Myra I. Roche on April 27, 2012

“Truth is stranger than fiction, but it is because Fiction is obliged to stick to possibilities; Truth isn’t.”: Mark Twain.

In a previous post, “Analyzing Media Reports about Genetic Testing” which can be found here,an NPR story was described reporting a Manhattan preschool (Porsafillo Pre) with plans to require DNA testing of any toddlers hoping for admission. The planned start date? April 1st! The proposed genetic testing would be used to “predict future excellence — things like intelligence, confidence and other leadership traits”. It also described obtaining blood from pregnant women in order to “isolate (the fetal) genetic makeup”, and, the real kicker, the results would be forwarded to the school in “about a month”. Apparently the school has a crack bioinformatics team sequestered in the basement. Must be why the tuition is so high.

Now, after reading an article in Slate dated April 27th, not April 1st, that story starts to sound a little less like fiction and a little bit more like, well, a movie. Entitled “Will Gattaca Come True?” the article describes the frenetic competition to commercialize fetal testing using noninvasive prenatal diagnosis (NIPD).  As you night have guessed from the title, it also makes dire predictions about the implications of opening these floodgates. The article, which can be found here notes that, in addition to chromosomal trisomies, the original target of the technique, gender can also be readily identified.  This was fully anticipated, according to the story, by Dennis Lo who, in 1997, discovered cell-free floating fetal DNA (cffDNA) in maternal blood. Reportedly his stipulation upon licensing the technology to Sequenom in 2005 was that “it could not be used for sex selection.” The story highlights the founder of a competing company, Natera, and describes his sister’s unexpected delivery of a baby with Down syndrome after negative prenatal screening as the trigger for his intense interest in this technology.  The company is also, for now, adhering to this self-imposed regulation against revealing fetal gender.

But if, as Lo reported in Science Translational Medicine, the entire fetal genome could, in principle, be reassembled from cffDNA and if his bet is correct that fetal genome testing could be widely available clinically in 10 years, the ethical implications of gender selection will just have to stand in line; a very long line. But let’s have a little dose of reality here. The Slate article mixes a dash of fact with more than a sprinkling of hype. For example, the author would have us believe that “aggravating probabilities (will be replaced) with accurate information”, ignoring the fact that, even with perfect genotyping, the predictive phenotypic implications of most genetic variants are imprecise, at best. As for the obligatory, ominous prophecy of a “Gattaca-like two-tiered society, in which parents with good access to health care produce flawless, carefully selected offspring (while) the rest of us spawn naturals”, the fact is that selecting against traits is a much less effective endeavor than selecting for traits which would require a whole different business model for  But even then, flawless?  Have you never seen a Dachshund?

But truth be told, when it comes to imagining a society of “health-care-haves” and “health-care-have-nots”, who needs fiction?


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