Will editing your baby’s genome someday be mandatory? An article in The Atlantic asked this question last year in reference to gene therapy as a medical treatment for genetic disorders. The author drew a moral analogy from the 1984 case of two parents choosing prayer over medicine and subsequently letting their child die. Similarly, last year Rachel and Joshua Piland effectively killed their jaundiced newborn, Abigail, when they refused to seek medical attention after their midwife told them of the child’s condition.
If the pertinent conditions of treatment availability, safety and affordability are met, then the moral and ethical principle seems clear. When your child is clearly suffering or will suffer from disease that you know they will be born with, then to forego preventive or active treatment is to encourage their pain and possible death. As in the case of the Pilands, such parents may rightfully be convicted of manslaughter. The entire argument for me is based on the wellbeing of the child or child-to-be in these situations.
The preventive comparison applies to germline gene therapy. This involves editing genes in your sex cells before fertilization, producing genetic changes that are passed onto the descendants of the edited individual. The after-the-fact treatment comparison applies to somatic cell therapy, which involves altering the genes in certain body cells, but not the sex cells. These changes will die with you.
Medical gene editing is not science fiction either. Last year, the FDA approved multiple gene therapies including Luxturna, Yescarta and Kymriah. Luxturna treats an inheritable form of progressive blindness. Yescarta and Kymriah treat different types of cancers by extracting your T cells and engineering them to attack the cancer cells.
Taking this all together, I set out to argue in favor of criminalizing a refusal to use gene therapy when the pertinent requirements are met. However, I soon faced quite the quandary due to the issues of defining and enforcing such a law.
Consider this for example: at what point do we consider something a genetic disorder with moral obligation to treat? Where is the line, for example, between a sniffle-inducing allergy to cats and a life-threatening allergy to peanuts? How could we consider the peanut allergy morally or ethically different than Huntington’s?
Also, consider the possible agency of the child. Those who overcome a disease or disorder often feel they would be a different person, for the worse, without that experience. This can range from someone surviving cancer to someone like myself, who has an often mild form of Tourette syndrome. But with a more severe form, I would justifiably blame my parents, (this in the case that they had the ability to prevent or cure the disorder but didn’t) I must assume someone surviving cancer would feel the same if they suffered an untreatable form. Indeed, we are wading through a river of muddy waters.
Then there is question of how we would enforce this legally.
We have to establish whether the parents are at fault for their child’s condition. In one case, a child is already alive and the disease already apparent, or the parents may have had her screened for genetic disorders that will show up as she grows. Either way, they are certain the disorder is there and to refuse therapy makes them responsible for their painful and shortened life. But if they do utilize therapy here, could they still be blamed even if one can prove they knew of the likelihood, or perhaps certainty, of passing on a disease before the child was born? I think not. But if therapy for the disorder doesn’t exist and they were aware of this, then they would be responsible.
But that example requires an after-the-fact conviction, which would be hard to obtain and presents ethical questions of its own.
The other case of enforcement is extreme and indefensible. Here, the government would ideally prevent people from creating a life of suffering by making couples utilize germline gene therapy. This is impossible, as most people would rather conceive a child naturally as opposed to using fertilization. Set that aside, and enforcement would still require a breach of privacy almost beyond any other. The government might need to demand access to everyone’s genome or at least have doctors report what individuals carry certain genetic diseases. This necessitates the forced testing of one’s DNA. Other than our most private thoughts, is there anything more personal the government could demand access to than our very genetic blueprints?
I’ve concluded that in pre-birth cases my original position is indefensible by anyone valuing personal freedom and privacy. Likewise, after birth the issue is still uncertain and ethically questionable when we try establishing prior knowledge of a disease’s imminence.
It is hard not to also see the underlying risk of state-sanctioned eugenics. However, to combat this I would place a moratorium on editing that goes beyond replacing or silencing harmful alleles. Treatment is good, enhancement is bad.
How do we decide where the line between treatment and enhancement is though? If a mother will have a son with Duchenne muscular dystrophy, should she be allowed to replace the faulty allele with an allele that causes her son to become more muscular than the average person, assuming such an allele exists? Maybe we ought to agree on an “average” allele to use as substitute.
However, this scenario demands a knowledge of the genome and the precise effects of certain genes which we currently do not have. But we will, and no matter if it is 20, 50 or 100 years from now, the discussion and debate will need to be had. The sooner we begin to have it, the better prepared we will be to deal with the techniques once they become safe, accessible and affordable.
Brandon Langston is a third-year student majoring in biology with a minor in history. ✉ BL882717@wcupa.edu.