genomics & society

Archive for the ‘Ethics’ Category

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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Telling Fact from “Non-Fiction”

Posted by Myra I. Roche on April 11, 2012

The previous post which can be found here has generated a couple of comments so far.  One was from Kelly Hogan, one of the contributors to this blog.   Her comment can be found here.  We also received a comment from Phil Harrell of NPR after we sent this email:  The UNC Center for Genomics and Society blog has taken the opportunity of using the story aired April 1, 2012 about the fictitious preschool requiring DNA samples to help our trainees who study ELSI (Ethical, Legal, and Social Implications of the Human Genome Project) topics develop critical thinking skills about genetic testing. Entitled: Fact or Fiction: Analyzing Media Reports about Genetic Testing, the post can be found at Thanks for giving us this great example.

He responded:  Hi, my name is Phil Harrell; I’m the producer behind that April Fool’s gag.  This is SUCH a cool use of that bit of silliness!  Thanks for letting us know.  Read the rest of this entry »

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Tell Us What You Think!

Posted by Myra I. Roche on March 20, 2012

What do you think about using WES in newborn screening? Click to vote in the poll.

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Tell Us What You Think!

Posted by Myra I. Roche on March 7, 2012

What do you think about students using their own DNA for classroom activities ?  Click to vote in the poll,

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Posted in Education, Ethics, Infomed Consent, Sequencing | Tagged: , | 7 Comments »

Student Use of Their Own DNA in Classroom Activities

Posted by Myra I. Roche on March 7, 2012

Last week, our ELSI reading group began a series of three sessions devoted to the controversial issue of whether or not students should be encouraged/allowed to use their own DNA in classroom activities. Dr. Kelly Hogan, a senior lecturer in the Department of Biology, became interested in this topic when, after discussing the availability of direct to consumer (DTC) testing with her class, two of her students decided to ante up and have their genome sequenced. One wrote about her experience in this post last December. And the other students? The best guess was that it was only the $200 price tag that deterred them from diving headfirst into their own gene pool.  Some instructors believe that if students have access to their own genetic data, they will become more engaged and learning will be enhanced.  But, as the University of California-Berkeley found out last year, sponsoring this kind of engagement has its own price. Read the rest of this entry »

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CGS Seminar: “Gifts of the Body: Expectations of Cancer Patients Involved in a Whole Genome Sequencing (WGS) Study

Posted by Dragana Lassiter on November 29, 2011

On Tuesday, November 15th, 2011, CGS trainees, Rachel Haase and Marsha Michie with CGS investigator, Debra Skinner, presented data from the whole genome sequencing (WGS) experience of cancer patients at UNC under the direction of CGS investigators, Jim Evans and Jonathan Berg, and Kristy Lee, the certified genetic counselor on the team.  The seminar was titled “Gifts of the Body: Expectations of Cancer Patients Involved in a Whole Genome Sequencing (WGS) Study.”  The analysis of gift-giving reveals complex interrelationships between the two seemingly contradictory motives of self-interest and altruism and has important implications for recruiting individuals into these studies.  Read the rest of this entry »

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