by Craig Klugman, Ph.D.
A few weeks ago I was watching the futuristic police procedural, Minority Report episode Memento Mori that focused on the predicted murder of a U.S. Senator who was supporting a bill (Steven’s Law) to permit parents to genetically engineer their children. Although a fictional universe, this issue has very real implications as demonstrated by a summit of scientists, policymakers, and science advisers from the US, UK, and China gathering this week in Washington D.C. to discuss the future of gene editing.
In the television show, Steven was the Senator’s son, a child who died because of a genetic disease that (we are told) could have been corrected in utero—if the procedure was legal. Brief images of the Senator at a campaign stop show protestors with signs both in favor of and against the new bill, reminiscent of political abortion demonstrations.
If there is a need to create a law that permits such tinkering, that means that in this fictional universe of 2065, a law must have already existed that outlawed genetic editing. Of course today in the real U.S., there is no law against genetic editing, only an agreement among researchers that human engineering should not be done. A gene editing tool known as CRISPR makes genetic engineering feasible and not-so-difficult. While many have embraced the call for a prohibition, many have not as evident from a September application in London for scientists to edit the genes of a human embryo. It is difficult to put a new technology back in the bottle, once the genie has been let out.
Today’s prohibition is limited only to humans. One of the latest genetic technologies changes genes in mosquitos to make the insects resistant to the malaria parasite. The existence of chimeric animals such as cats with glow-in-the-dark jellyfish genes demonstrates this practice. Or one can look at the super muscular beagles made in China, altered goats, rats and pigs. Even in fictional 2065, bans are limited to humans: Companies grow animal protein in a vat, without having to raise or slaughter animals. There are many reasons to support human genetic editing—elimination of disease being the foremost. If we have a vaccine against a disease that we know will main or kill like measles or hepatitis A, then it would seem there is a prima facie duty to make that available to prevent the disease (the exception being in the cases where one is allergic to the components of the vaccine). Although many parents choose to avoid such vaccination for their children, if the government was suddenly to restrict access to the vaccine, that would be a wrong—increasing morbidity and mortality that could have been prevented. As the world of public health makes clear, preventing morbidity and mortality are among the highest goods.
By analogy, being able to correct a genetic error or turn off a genetic disease would also seem to be a good. Let’s assume we are discussing somatic cell engineering (changing the genes of one person), rather than germ line (forever changing the genes of a person’s sperm or eggs and thus, all of his/her future progeny). Not preventing disease, even if genetic, is sentencing people to suffering. If this seems like science fiction, then you’d need to check this month’s article in Molecular Therapy where scientists announce they have the technology to turn off the genes that cause facioscapulohumeral muscular dystrophy.
What if in trying to prevent a disease by turning off a gene, we change a gene that leads to death of many humans if not the elimination of the species? In the Memento Mori episode, the murderer is a Dr. Hertzog, a former Harvard researcher who accidentally tweaked the wrong gene in his animals while working on a cure for cancer and ended up killing all of the test subjects. He fears that one wrong slip could similarly destroy all of humanity. To prove how dangerous human genetic engineering might be, he develops a virus that affects only the Senator and when he manages to splash her with a fluid containing the altered-virus, she has a slow and graphic death. Thus, the episode demonstrates the same ironic thinking that has people who claim to value life (usually only of the unborn), murdering doctors who perform abortions.
So one reason to ban human engineering is that mistakes could have the effect of damaging (if not wiping out) the human species. There are also many arguments against germ line engineering (editing being the altering of DNA to eliminate disease and engineering being the changing, deletion or insertion of genes to change any other aspect of the genome)—that it is the height of arrogance to change the genome of unborn generations who could never consent to the change. Another line of thought is that science might quickly move from being able to repair, to making designer kids—one’s with red eyes and green hair who are 7 feet tall and have 200 IQs. A less dramatic version of this scenario played out in the bifurcated society presented in the 1997 movie GATTACA. Our moral repugnance comes into play when we consider the esthetics of genetic engineering—making changes that are visible whether in cosmetics or in action. This aryan argument is a fear is that parents would choose children who look like some concept of “perfection,” that would lead to a decrease in diversity of our species and an increase in stigmatization of those who do not meet this engineered ideal. Another concern is whether changes to a single person (somatic cell) can really be limited to just that one person, or would it effect the germline as well: Although women are born with all of the ovum they will ever have, men are always making new sperm. New understandings of epigenetics would seem to lend support toward the latter. The disparity argument suggests that such technologies would be expensive and only available to those of higher socioeconomic means; therefore increasing health and social disparities.
In the United States, we have been reluctant to make existing technologies illegal. Consider cloning that caused huge concerns in the late 1990s. The U.S. never created a law against doing that to humans (though the limitations of the technology itself have prevented further work in both cloning and engineering human embryos). Steven’s law is unlikely to be necessary because the law it is meant to repeal is unlikely to happen. And consider that law was a blunt hammer—making all human genetic manipulation illegal rather than differentiating between editing for disease and engineering for selection in the U.S. (who knows what research is being done in other countries in this fictional time). Once a technology is created, the best we can hope to do is regulate it so that it can be used responsibly. Pure prohibition will only push such technologies underground which all but guarantees that the disparities fear comes to light. At the same time, it also ensures that such engineering focuses only on preventing disease, because paying for your geneticist to give you a 7-foot tall, purple child is not exactly something that could be easily hidden—the crime would eventually be known. A voluntary ban, however, is insufficient and in order to be responsible, regulatory power must be given to an international agency to oversee this work and ensure that it is used to help humanity instead of wiping us out.