Quantified and Analyzed, Before the First Breath

Posted by Jessica Cussins June 26, 2014
Biopolitical Times
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Razib Khan, a PhD student at UC Davis studying the evolutionary genetics of cats, admits that he has “an obsession with genetics.” Two years ago, he sent 23andMe a genetic sample of his 2-month-old daughter so that she could be “easily slotted into the bigger genomic family photo album.”

At the time he predicted that “in the very near future, parents will be able to avail themselves of precise and accurate genomes of their future child in utero.” And just last month he declared, “The future is here, deal with it.”

So it is.

When Khan’s wife became pregnant with a boy, they didn’t waste any time. She had a biopsy of tissue taken from her placenta sent for testing of chromosomal abnormalities. The test showed that the boy was healthy, but Khan wanted to know everything.

After some difficulty, he obtained the original sample from the lab that had tested it and, using his own lab’s high-speed sequencing machine (usually reserved for plants and animals), sequenced the fetus’ entire genome. Using free online software, he was then able to determine 7,000 “genetic variants of interest.” Apparently there was nothing to worry too much about because Khan reported, “It’s mostly pretty boring. So that is good.”

And so his son was born in California earlier this month, becoming the first known healthy baby in the US to have had his entire genome sequenced before birth.

What will it be like to grow up with 7,000 “genetic variations of interest”? At what age will he be told about which? Will he be treated differently because of any of them? Or encouraged to develop specific skills or behaviors? The limited guidelines available for dealing with the genetic testing of children have already been flouted.

Although Khan told MIT Technology Review that sequencing his son “was more cool than practical,” he also “did it to show where technology is headed.” Is this really what most parents will want?

Khan is blunt about the rationale for extensive sequencing in utero – parents will still have a choice about whether to carry out the pregnancy. And he freely acknowledges that this technology throws us headlong into “the second age of eugenics.” But he believes that “the ability to select for quantitative traits” is “a major goal.” And though he regrets that perfection may still be far off, he notes that whole genome sequencing allows one to “select for mutational load” and exclaims,

The marketing pitch for this writes itself: imagine you, but bright of mind, and beautiful of face!

When a technology is so directly imbued with the values that motivated recent human atrocities, what are the avenues for responsible integration? The question of which lives are worthy of existence is one that, in my mind, should never be uncontroversial.

Kevin Mitchell, an Associate Professor in Developmental Neurobiology in Ireland, discussed some of these issues in a blog post last year and concluded,

In the meantime, before we go proposing scientifically impractical and morally questionable extreme measures, we have a proven and powerful tool to make people smarter: education.

But Khan isn’t buying it. His newest blog? Reading to Newborns Is Probably Useless.

Previously on Biopolitical Times: