In public discourse, when we think of modifying the human genome we typically assume this means curing disease or, more hypothetically, increasing “functionality”. In my intro post, I used these terms as well. To rely on this overly simple distinction, however, means to shoehorn people into a remarkably small number of categories: the sick and those with an “ordinary” degree of room for “improvement”.
What requires greater clarity is how our concepts can do justice to people with disabilities. An increasing number of voices of people with disabilities in the media say that they don’t live up to society’s standards of functioning, and are tired of being reduced to a lack of functioning – which is part of living “in a world that isn’t built with us in mind”, in the words of one commentator. Often disability is part of the identity that a person claims, and they find meaning in the individual ways in which they lead their lives.
At the same time, new technologies have often been introduced with the hope that they would alleviate suffering, and one thing many people associate with disability is suffering and hardship to an unusual degree. If a pregnant woman or a family doubts they will be able to cope with the challenges of a child with disability, this is difficult to dismiss entirely.
So if, with genome editing, we are entering “the age of the red pen”, as The Economist put it, then what will become of the way society treats people with disabilities? CRISPR forces us to spend more time pondering this issue and the potential indirect impact of this new technology on the lives of those living with a disability.
This issue will certainly need treatment in an in-depth post in the future. For now, I thought it might be helpful to point out several interesting online articles from recent weeks for those who wish to understand more. There has been a lot published lately. Is there perhaps a new trend toward greater media attention on this issue? Is this already one consequence of gene editing? For one thing, the recent Paralympics in Rio did result in an increased amount of public attention on disability. In addition, many of these pieces were written by people with disability or their relatives, or they made a point of including these perspectives.
So here are some suggestions:
- First, there’s the New York Times series on disability: “Essays, art and opinion exploring the lives of people living with disabilities”. These opinion pieces were started in August and feature a personal account each week (nine essays so far).
The Guardian also published a few articles on the occasion of the Paralympics:
- “The Guardian view on the Paralympics: focus on ability, not disability”
- “It’s time to stop calling disabled people ‘inspirational'” – video
- Turning the Paralympians into ‘superhumans’ is no help to disabled people’
This opinion piece is similar in outlook to a remarkable contribution by the late Jean Bethke Elshtain (“Neither Victims Nor Heroes: Reflections from a Polio Person”, in: Philosophical Reflections on Disability, eds. D. C. Ralston, J. Ho. Philosophy and Medicine 104. Dordrecht et al.: Springer, 2010, 241-250).
Further, with a new method of testing unborn embryos for genetic disorders – non-invasive prenatal testing (NIPT) – likely to be available through the NHS (the UK’s public health care system), there has been a renewed discussion in the UK of how society should think of people with Down’s syndrome. A BBC2 documentary has joined this debate. As there’s a trend towards women postponing pregnancies until they are older, there is an increasing chance of genetic irregularities, medically speaking. Abortion rates at or close to 100 % due to a Down’s diagnosis have been reported from Iceland and Denmark.- In many discussions of Down’s Syndrome, there is not necessarily a direct link to genome modifications carried out in the lab. Certainly both CRISPR and Down’s testing force us to think about disability again. In addition, there has been research on “silencing” the additional chromosome that is at the bottom of Down’s. A genetic intervention would “paste” a “silencer” into the genome, with a gene editing instrument similar to CRISPR.
- “Moral Maze: A World without Down’s Syndrome?” Radio show
- “Sally Phillips: Do we really want a world without Down’s syndrome?”
- “Whether to have a baby with Down’s syndrome – it’s not a simple choice”
- “Sorry, Sally Phillips, but a woman should be able to know if her unborn baby has Down’s syndrome”
- “My brother has Down’s syndrome. I wouldn’t change him for the world”
- “Is it a bird? Is it a plane? No, it’s my son! Coming to terms with Down’s Syndrome”
Finally, an excellent piece of reporting that goes into greater detail than the pages listed here is Erika Check Hayden’s “Should you edit your child’s genes?” (a.k.a. “Tomorrow’s Children” in Nature 530 (2016: 7591)).
For general news regarding people with disability: Disability News Service