By Mac Brockmyre
There is a brave new world of genetic analysis available to the average consumer through direct-to-consumer DNA testing, which has gathered the information of roughly 26 million people as of 2019. Largely viewed as a hobby to find long-lost relatives or determine ancestral history, some companies offer tests that allegedly can determine genetic predispositions to certain diseases or health risks. The costs of these tests have dropped from $1,000 to $50, and the proliferation of online services makes it much more accessible to the average person. A curious and consenting adult could have this information and take small steps to say, prevent Type-2 Diabetes if their risk profile notes that complications could arise in the future. The personalized harm with having this information is minimal because of the agency that adults have over their health and whether they want to take the necessary tests in the first place. However, this notion of genetic analysis gets murkier when children are involved.
Presumably, parents would want their child to be as healthy as possible and would go to any lengths to ensure that happens. Given that genetic testing has been made available to the greater population, it has crept into the realm of genomic prediction for children that haven’t been born yet or using it to test young children. As with most scientific and medical endeavors, there are pros and cons to whatever advancements are being made. A scientist in China recently edited the genomes of human embryos to make them immune to HIV. On its face, this seems like a net positive in eliminating the possibility of a deadly virus, however, it opens the door for more nefarious projects that would lead towards “designer babies” and the notion of legitimized eugenics.
The concept of designing the genetic makeup of an embryo is the stuff of dystopian science fiction, however, it is on our doorstep. Taking that particular minefield and setting it aside, the seemingly less harmful cousin of designer genomic sequencing is a predictive model. While about 99.9% of the human genome is the same across the population, the .01% difference still has about one million single-nucleotide polymorphisms (SNPs) that are analyzed. Combining a large sample of the SNPs can produce a polygenic score that evaluates the risk of developing a certain disease. This analysis of an embryo is complicated because there is such little genetic material to choose from, however, theoretically, parents using IVF would be able to select between several embryos that would have the probability of having the highest IQ. While this is not editing specific genetic sequences, it does call into question whether parents should be doing this.
Genetic testing provides valuable information to parents in determining the child’s risk profile for certain conditions or their individual futures. However, there is a question of a child’s agency in making this initial determination to even have the test. As technology develops, it is imperative that society carefully considers the implications of genetic testing across all age groups from the embryonic stage to adolescence. The law generally views the age of eighteen as the threshold of adulthood, however, there is ongoing research and scholarship that suggests that children develop at varying rates and their ability to make decisions based on risk, develop concepts of mortality, and independent choice may begin as early as seven years old. Therefore, a seven-year-old is legally able to give assent to human subject research in the United States. A parent, and by extension a medical provider, have an obligation to provide the best possible care to a child. Genetic screening would help assess risk, but there is a possibility that it is too much information too soon. If a child is told they are at risk for, let us say heart disease, their whole life may revolve around that prediction. This is not to say that taking measures to prevent cardiac issues is not positive but living with that fear may not be a net positive in the long run.
Geneticists still do not have a full grasp of how certain sequences affect each other, and while a probabilistic guess can be made, the totality of how certain codes create certain traits cannot be known at this time. While the technology and scientific knowledge have advanced significantly, there are still gaps in knowledge and understanding. When discussing a child, there needs to be great care in whether parents and medical providers should be able to assess their future based on genomic testing.
Student Bio: Mac Brockmyre is currently a second-year law student at Suffolk University Law School. He is a staffer on the Journal of High Technology Law. Prior to law school, Mac received a Bachelor of Science Degree in Accounting from the University of Richmond and subsequently worked for seven years in the Insurance Industry as a Claims Representative for a Tier 1 Health System.
Disclaimer: The views expressed in this blog are the views of the author alone and do not represent the views of JHTL or Suffolk University Law School.