DNA Testing of Present and Future Children

Direct-to-consumer genetic testing companies used to focus on ailments and ancestry, and were marketed directly to the people tested. But once you’ve been told what gruesome disease you have a one in six chance of developing, and where your great-grandparents might have lived, what’s next? Your children!

The pitch: Should your kids focus on music or math, reading or running, learning languages or dancing or drawing? Will they need help avoiding depression or combating shyness? Have them take a genetic talent test!

As genetic counsellor Katie Stoll noted in May 2018, this makes children and their parents the target market for a whole range of DNA tests, which necessarily compromise the children’s “individual autonomy and privacy of genetic information.”

The American Academy of Pediatrics and the American College of Medical Genetics and Genomics developed recommendations about the genetic testing of children in 2013, and reaffirmed them in 2018. The recommendations stress that all such decisions should be “driven by the best interest of the child,” and “offered in the context of genetic counseling.” They encourage waiting when possible for the child to be capable of informed consent. In particular:

16. The AAP and ACMG strongly discourage the use of direct-to-consumer and home kit genetic testing of children because of the lack of oversight on test content, accuracy, and interpretation.

Stoll focused on Orig3n, which specifically targets parents with its Child Development test ($99; $59.93 at Amazon, available for Prime shipping). She had them test her dog, and the report said that, in Stoll’s words, “Ginger appears to be a pretty average kid in terms of her intellectual and athletic potential.” She later sent a sample of tap water, which received a similar report, signed by “a DNA Laboratory Director, PhD Geneticist and fellow of a major American genetics organization.”

Also, there was no consent form, and no information was provided about the accuracy, risks, or limitations of the test.

Several other companies sell similar tests. For example:

• TellmeGen promises some genetic counseling and sells a comprehensive medical, ancestry, and trait test ($199; $169 at Amazon) to reveal “your predisposition to baldness or your tendency to obesity,” and if your child will have curly hair, or be tall, and what color eyes he/she will have.
• AncestryDNA sells a $10 add-on that covers 18 traits, including the shape of your earlobe, whether you have freckles or a unibrow or long fingers or a cleft chin. (Check a mirror, maybe?)
• MiaDNA, which appears to be based in Israel, sells “Life Style DNA Test Kits,” including Children’s DNA Discovery ($149; same price but bundled with nutrition analysis at Amazon)
• MapmyGene has an “Inborn Talent Genetic Test (ITGT)” and boasts that:
 “Knowing your child’s genetic make-up allows you to take control of their development to nurture their talents.”

China may be even more devoted to “talent tests,” according to a recent article in MIT Technology Review, which quite rightly calls them “questionable.” But they are popular, with “a hundred or two hundred parents testing each week,” for over 200 indicators of talents or traits. Some school principals encourage parents to use such tests, on the plausible-sounding grounds that they will develop the specific abilities of each individual child. This seems to be a significant contributor to the rapid growth of genetic testing in China, where sales of DNA sequencing machines have recently been growing over 40% a year.

But what if you do not have a child yet? Genomic Prediction has tests for future parents.

The company’s management is specifically focused on “Expanded Pre-Implantation Genomic Testing,” which requires embryos created through in vitro fertilization (IVF). They announced on January 31 this year that they had raised $4.5 million through a sale of stock, and have developed a “cost-effective methodology of polygenic scoring.”

The founders include Stephen Hsu, who has long been attempting to unravel the genetics of human intelligence, with the explicit goal of “improving” people. Also, Laurent Tellier, who used to work at BGI in China and “whose inspiration is the science fiction film Gattaca” (which many people regard as a horrifying warning). Hsu and Tellier, with three others, released a pre-print at the end of December on “Genomic Prediction of Complex Disease Risk.” Another founder, Nathan Treff, is the company’s Chief Science Officer and Clinical Laboratory Director, and has experience with IVF and preimplantation genetic screening and diagnosis (PGS/PGD).

Genomic Prediction is already marketing to IVF clinics. They are selling a test to identify low-IQ embryos, which would be discarded. New Scientist reports that, according to Hsu, their test is not really accurate at predicting IQ yet, but can identify outliers, “giving prospective parents the option of avoiding embryos with a high chance of an IQ 25 points below average.”

They could (they say) select embryos likely to have IQ 25 points or more above average, but they won’t “for ethical reasons.” Yet. Says Hsu:

“I think people are going to demand that. If we don’t do it, some other company will.”

A few IVF doctors are interested, but there are at least two significant issues: We do not understand much about the full ramifications of any polygenic selection, which could therefore also lead to unwanted traits (such as susceptibility to some particular disease). Moreover, for any particular couple the number of embryos to choose from is very small, and all of them are likely to fall in a narrow range, close to the parents.

The eugenicists at Genomic Prediction — for that is clearly what they are — may not succeed. But quite unrelated research suggests that even if selecting embryos for intelligence does not work ... it may sort-of work. Or at least have a significant indirect effect, by convincing people that it has.

Research published in Nature on December 10 demonstrated that:

Learning one’s genetic risk changes physiology independent of actual genetic risk

Or, as a news piece in Science put it, using an example from the research,

Just thinking you have poor endurance genes changes your body

And if you think you have you have good endurance genes, you run farther.

Social sciences can also suggest what effects selection for intelligence might have in practice. For example, another recent study demonstrated that the mindset of professors — whether or not they believe that intelligence is fixed or can develop over time — affects the performance of their students, irrespective of other factors such as the teacher’s “experience, age, race, or gender.”

All these discussions focus on individuals. There are much broader concerns about the social implications of adopting these technologies — even if they were to work. Inequality, particularly but not only in the US, has already reached levels not seen in nearly a century. Our society may not be able to withstand any further stresses.

We need technologies that benefit society as a whole. These “talent tests,” whether for children or for embryos, serve mostly as a distraction. We really should not be fooled.