It isn’t a surprise to anyone who’s been even casually following the development of reproductive technology – indeed, many of us have been preparing for this moment since the movie “Gattaca” was released 20 years ago – but last week made it official: We can now edit the genetic material of embryos.
Researchers took a sperm cell and removed a gene mutation which causes a particular type of heart defect, and then watched what happens when that sperm cell united with a genetically normal egg cell. The result was that, in 42 of 58 attempts, the resulting embryo simply used the mother’s (healthy) copy of the gene to fill in the gap.
That’s a 72 percent success rate in blocking the genetic abnormality. In sexual production, the defective gene is passed on about 50 percent of the time.
But as the movie “Gattaca” so brilliantly demonstrated two decades ago, there are numerous, profound ethical questions when such a practice is normalized.
The first ethical question, of course, is about the moral status and treatment of the embryo.
There are important ethical questions to ask about the creation of a fellow living member of the species Homo sapiens in a laboratory in the first place (procreation that is disconnected from the fruitful sexual union of woman and man) — and these questions become even more grave when embryos are made and then discarded like so much trash.
If other contexts, the medical community is obviously not permitted to do experiments on research subjects in which the subjects receive no possible benefit and are simply abandoned to die. If we took embryos seriously as the fellow human beings they are, we would do more than shrug (or perhaps not even take notice) when each of the 58 embryos used in the study cited above are simply discarded as medical waste.
But the ethical issues become even more profound when we think about ways in which gene editing is likely to be used in the future.
Sure, few have objections to increasing the chances embryos are without disease, but what counts as a “disease” is a notoriously slippery and controversial topic. Do disabled people, for instance, have a disease? Or do they simply have a different way of being in the world?
Is Down syndrome a disease? Maybe. But people with Down syndrome actually report being happier than those without it. Are blindness and dwarfism diseases? Maybe. But hopeful parents who happen to have these conditions sometimes want to select embryos for implantation with whom they can share their rich-though-different experience of the world with their children.
There is even debate about whether having red hair is a kind of disease. After all, such hair is the result of mutation of the MC1R protein, and that mutation is associated with increased chances of Parkinson’s and melanoma.
Is there a line-drawing moral difference between editing out a genetic mutation which causes a heart defect, and editing out a genetic mutation which causes red hair?
If not, and we approve gene editing for future children, we are in for a wild ride of gene editing directed not only at avoiding disease, but at genetic enhancement—sometimes referred to as “designer babies.”
Don’t believe me? Think we’ll somehow find a way to draw a hard line against using this new reproductive technology in ways which prohibit enhancement?
Think again. We are already using established reproductive technology to design our own children. For years now, we’ve seen hopeful parents pay obscene amounts of money to egg donors who are attractive, athletic and have sufficiently high SAT scores. Fertility clinics have drop-down menus on their websites which allow one to choose from egg donor “profiles” which have the desired traits.
Especially given the reproductive autonomy our culture gives parents today, there is very little reason to think gene-editing for disease won’t also lead to gene-editing for enhancement.
It is a cultural problem that Pope Francis has appropriately called out as the “medicine of desires.” More common in affluent countries, the pope said it involves the pursuit of physical perfection which leads to the marginalizing and discarding of those who are not seen as efficient.
What will the medicine of desires do with gene-editing? It doesn’t take a genius to figure it out. “Gattaca” predicted that a culture with this technology will refer to people not genetically-edited for the best traits as “invalid,” and their births derisively dismissed as “religious.”
In that dystopian world, procreation as a result of sex could only be the result of irresponsibility or vulgar superstition. In our world, the director of the Center for Law and Biosciences at Stanford writes books titled The End of Sex and the Future of Human Reproduction, hailing such a world as a wonderful development.
Some are less than impressed with these kinds of predictions. Art Caplan, head of bioethics at NYC, says that they fill him “with amusement,” and claims the technology for genetic enhancement is so far away that it is a question, not for us, but for our grandchildren.
But even if Caplan is right about the time it will take for the technology to arrive, the time to resist the culture which will lead to a dystopian reproductive future is now.
Now is the time to challenge the ableist assumptions built into our uncritical sprint toward development of this technology. Now is the time to challenge the idea that children are things to be created and manipulated in a laboratory rather than welcomed as gifts with an unconditional value that does not come from the will and desire of the parents.
Now is the time to challenge a throw-away culture which selects and rewards those who are productive and efficient, while discarding those who are not.
If we wait for our grandchildren to do so, it will be too late.
Charles C. Camosy is Associate Professor of Theological and Social Ethics at Fordham University.