Should We Cure Genetic Diseases?

June 07, 2017

by Professor Bonnie Steinbock

Should We Cure Genetic Diseases?

In "Trying to Embrace a 'Cure'," (New York Times, June 4, 2017), Sheila Black notes that in the near future there may be a treatment that could amount to a cure for the genetic illness she and two of her children have -- X-linked hypophosphatemia or XLH. Although XLH is not life threatening, it has significant disadvantages, including very short stature (short enough to qualify as a type of dwarfism), crooked legs, poor teeth, difficulty in walking, and pain. A cure would seem to be cause for celebration.

But Ms. Black is ambivalent about the prospect. Although she acknowledges the potential benefits both to individuals and to society, the issue is, for her, complex.

Having a serious disability may enable the development of certain virtues. She writes, "... to be human often entails finding ways to make what appears a disadvantage a point of strength or pride." Or, as Nietzsche put it,  “That which does not kill us, makes us stronger.”

It's very likely that having polio made Franklin Roosevelt emotionally more mature and strengthened his character, but would that be a reason to oppose the development of the Salk vaccine? Comedians often credit their talent from having been bullied as children; novelists and playwrights find inspiration in their awful childhoods. Admiring their ability to overcome adversity does not mean being ambivalent about ending bullying and child abuse.

Another reason is that disabilities have created communities that are a source of support and identity. As a child, Ms. Black longed for a cure for XLH, mostly because it made her look different. Now XLH is a part of her identity. She wonders, "Who would I be without my XLH? Who would my children be?"

No one searching for a cure for a genetic disease advocates forcing people to be treated. Ms. Black can refuse treatment if it would violate her sense of self. But it is hard to see why her sense of identity should prevent others from having access to a cure.

Perhaps the point is not individual identity, but the existence of an entire group. The elimination of genetic disorders means the erasure of their world and their culture. Instead of eliminating those with Down syndrome, achondroplasia, blindness, deafness, or spina bifida, we should welcome them as enriching human diversity.

This sort of objection is most often made against prenatal testing, which C. Everett Koop, U. S. surgeon general from 1981 to 1989, referred to as potential "search and destroy" missions. However, even if one accepts this characterization of prenatal testing (and I don't), equating cures with prenatal testing seems dubious. A cure does not destroy anyone. Abortion prevents the existence of someone who will have a disability, whereas a cure gives that individual the option of living without the disability.

A final reason Ms. Black gives for feeling conflicted is the possibility of moving beyond cures to enhancement. The fear here is that some day, genetic engineering techniques, like CRISPR-based targeted genome editing, may be used, not to cure disease, but to make some people superior.. This is alleged to threaten human equality.

Is genetic enhancement likely? I am skeptical. Much of the hand wringing about CRISPR betrays an oversimplification of the relation between genes and traits. The number of genes associated for any traits will be large, and all of those genes will interact with large numbers of other genes. Moreover, genes are only part of the story. Our traits and behavior are also affected by a myriad of biological and environmental factors, which also interact with one another. This complexity makes it hard enough to cure genetic diseases. It will be much harder to use gene editing to produce the kinds of traits people are likely to be interested in, such as intelligence, athletic ability, attractiveness, and courage. Moreover, desirable traits are always context-dependent. A propensity for aggression can make someone courageous in battle or likely to bully subordinates.

Suppose that my skepticism can be overcome, and it would someday be possible to give people a "genetic edge" for desirable traits. Would that be a threat to equality? Ms. Black quotes the novelist Kazuo Ishiguro: "In liberal democracies, we have this idea that human beings are basically equal in some very fundamental way. We're coming to the point where we can, objectively in some sense, create people who are superior to others."

However, some people are already superior to others in the sense of being more athletic, smarter, better musicians, and so forth. Moreover, the reason for their superiority is, in part, likely genetic. If that's not a threat to equality, why should it be if those who have a lesser genetic endowment are able to get help from medical technology?

Technologies do not determine their uses. People and societies decide how to use them. Genetic enhancement, should it ever becomes a reality, could be used to level the playing field. It is up to us to ensure that it does.

Members of the disability community have greatly enriched our understanding of the concept of disability and the lives of people who live with disability. Nothing I have said here disputes the importance of their contribution to public discussion about cures for genetic disease.

Tags:Bonnie Steinbock“Trying to Embrace a 'Cure'”Sheila BlackX-linked hypophosphatemiaXLHgenetic illnesscures for genetic diseasedisabilitiesdisability community identitygenetic engineering techniquesCRISPR-based targeted genome editinggenetic enhancement

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