For decades, scientists from around the world have been in agreement about one ethical rule: Don’t try to change genes in sperm, eggs or embryos.
Trying to use genetic engineering to fix diseases in the cells of our body, like cystic fibrosis in the lungs or macular degeneration in the eye — that’s fine. A lot of work on this kind of gene therapy has been going on around the world for many years. But those genetic changes, whether they work or not, are not passed on to future generations. Trying to change the heredity of our kids and grandkids, either to fix diseases or to make “enhanced” children, was again and again declared off limits by scientists, doctors and many others.
The real reason I suspect was no one knew how to accurately change the genes in an egg or embryo. That just changed.
Scientists and ethicists from around the world have been meeting this week at the National Academies of Science in Washington at an international summit to debate the benefits and risks of a new form of gene editing. Techniques involving a tool called CRISPR — essentially a DNA knife that lets scientist precisely snip out and put in genes, create the very real prospect for engineering our descendants. The technique is already being applied in insects and animals. The debate in Washington is over whether the old rule of not trying to change the genes of future generations ought to hold.
It won’t. Nor should it. There are too many miserable hereditary diseases — sickle cell, various anemias, hemophilia, type one diabetes, cystic fibrosis, mitochondrial diseases, polycystic kidney disease, some forms of breast cancer, Tay-Sachs, just to name a few — that CRISPR could help fix. It is absurd to think that efforts will not be made to eliminate them by genetic engineering.
Some will say this can’t be permitted because opening the door of disease repair opens the door to eugenics — designing kids who are smarter, stronger, taller and hardier than we are. But this argument will fail. The power of parents seeking to prevent harm to their kids will overwhelm concerns about a world of superkids and other kids who are have-nots. If we are going to limit genetic editing of embryos or eggs and sperm just to disease-repair, those who want that limit to hold will have to win the argument that it is wrong to try and make better babies.
They will never succeed in stopping hereditary genetic engineering out of concern for possible abuse and misuse for the purpose of enhancement in the face of real human suffering in the here and now. The sick cannot ethically be held hostage to worries about possible future dangers. Those need to be handled on their own terms. The old rule against genetically altering heritable traits is history.
So if genetic engineering of future humans is going to happen, then what ethical rules need to be in place to manage that future? First, the techniques need to be tried in animals to show both safety and efficacy. That is what we expect of new drugs and vaccines, and we ought to expect it of CRISPR. Second, review committees that are independent and have no commercial interest in companies doing CRISPR need to review consent, the competency of teams proposing to try treatment, the soundness of the underlying science and the willingness to do long-term, independent follow-ups on patients.
The good news is those committees exist; they are called institutional review boards. The bad news is they need to be brought up to speed on CRISPR and the alternatives that might be used in order to help protect families and their yet-to-be born kids from overly optimistic scientists and doctors. Lastly, international rules need to be in place to determine how much evidence from animal studies is enough and which diseases ought to be targeted first and why.
The old rule about not trying to change the genes of our children never made much sense to me. Now that we are on the verge of knowing how to do so, it makes even less sense. Ethics is needed in moving forward, but in the battle against disease, moving forward is the right thing to do.
Arthur Caplan is the Director of the Division of Medical Ethics at the NYU Langone Medical Center in New York City. Thinking of submitting an op-ed to the Washington Examiner? Be sure to read our guidelines on submissions.
