(Credit: Pixabay)
Editor's Note: Françoise Baylis is University Research Professor at Dalhousie University. She is a member of the Order of Canada and the Order of Nova Scotia, as well as a fellow of the Royal Society of Canada and of the Canadian Academy of Health Sciences. Baylis was one of the organizers of, and a key participant in, the 2015 International Summit on Human Gene Editing. She is a member of the WHO expert advisory committee on Developing global standards for governance and oversight of Human Genome editing. She is the author of Altered Inheritance: CRISPR and the Ethics of Human Genome Editing. She spoke to Charles Camosy.]
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Camosy: Knocking out or editing genes that cause disease in human beings is one thing -- but, as you point out, this raises important ethical questions. Like what counts as a disease at all, who gets to decide what counts as a disease, and what understanding of the good is used in making such decisions. There is also an important question about whether this technology is likely to exacerbate the radical inequality we already have. Can you say more about these concerns?
Baylis: Not only can human genome editing be done in two different kinds of cells, it can also be used for two different purposes -- health-related (therapeutic) purposes and non-health-related (enhancement) purposes. There is, for example, the hope of using human genome editing to treat blood disorders, lung diseases, muscle wasting disorders, cancers, and so on. Beyond this, some hope to use genome editing to make cosmetic changes, to improve cognitive abilities or to
promote athletic prowess. For many, non-health-related interventions are ethically controversial.
Françoise Baylis. (Credit: Courtesy to Crux)
An important worry with heritable human genome editing (where genetic changes are made to subsequent generations) is the ever-widening gap between the haves and the have nots. It is widely assumed that the average person will not be able to afford this technology. Meanwhile, wealthy and powerful elites will be able to use this technology to inscribe their privilege in their DNA.
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Metaphorically speaking the human genome belongs to all of us. In my view, we should all have a say as to whether it should be modified and, if so, to what end. In support of this goal, many of us have
called for a moratorium to provide time for careful consideration of the ethical issues. Others object to this idea and, most especially, they
object to the m-word.
But inserting desired genes -- sometimes called genetic enhancement -- is something else, right? How likely is that to come about in the near-to-medium term? What different kinds of ethical issues does this raise?
In my own work, I write about
health-related and non-health-related interventions. I try to avoid the common rhetoric about therapy and enhancement where it is often assumed that therapy is good, and enhancement is bad. I, along with many others, believe that there is no robust moral demarcation line between therapy and enhancement.
Imagine a future 'wildly hypothetical' (possibly improbable) world in which it is possible to increase a person's height by making a few genetic tweaks. Now imagine a young American boy whose estimated adult height is about 5'2". His parents are worried that he will experience significant discrimination. They want to use genome editing technology to try to increase his height to the average height for American males, which is close to 5'10".
Should the parents be able to modify their son's genome in an effort to protect him from the harms of discrimination? Should the answer to this question depend upon the cause of the short stature? More specifically, should access to future genome editing depend upon whether the boy will be short because of a genetic condition that is widely recognized as a genetic illness or because his parents are short and so he is expected to be "naturally" short? From a different perspective, what if the parents want their child, who is a skilled junior basketball player, to join the Olympic team and for this reason they want to increase their child's height to 7' not 5'10". Should it matter if the desired genetic modification is to gain a competitive advantage as compared with promoting health and well-being?
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