I have recently been working on a bioethics textbook. Bioethics is a discipline largely driven by case studies – short narratives intended to make the ethical issues under discussion clear, real and urgent. Consequently, many bioethics textbooks include case studies. I want to do something different in this month’s column, namely, present one of the case studies on which I have been working. Attentive readers will notice that the case study presented below gets at the same issues I considered in last month’s column (CRISPR and the genetic revolution). I would like readers to think not only about the issues raised by the case itself, but also about whether or not the case study helps to make the ethical issues raised by these technologies clearer and more accessible.
Case study
The development of new technologies like CRISPR are likely to make it possible to alter the human genome in ways that will affect future generations – that is to say, genetic alterations that are made in particular individuals will then be passed on to their descendants. Moreover, while these changes are likely to occur as a result of particular parents making changes in the genomes of their children rather than as a result of government interventions, the long-term consequences may alter not only individual genomes but the human genome as well. This case study is set at a time in the future in which this technology has become both commonplace and commercialized.
Joe and Susan desperately want to have a family, and they both want children who are genetically related to both of them. Unfortunately, they are both carriers of undesirable genetic conditions that are likely to affect the health of their children. They do not want any potential children to suffer, so they have, so far, chosen not to reproduce.
However, gene editing technology has recently become cheaper and more accurate. Consequently, companies offering gene editing services have sprung up, and one, “CRISPR Services,” has recently opened in their community. CRISPR Services has been marketing themselves as a way of ensuring healthy offspring for people like them who are concerned about their family’s genetic make-up.
Joe and Susan have been inundated with ads from CRISPR Services lately, and they are intrigued by their promise. ‘Do you have a family history of Huntington’s Disease or cystic fibrosis? Tay -Sachs or sickle cell anemia? Dementia or cancer? Come and see us, and we’ll make sure that your children are born disease-free, and that your descendants will not be afflicted by the family curse!’ The clinic offers IVF treatments, and then uses gene editing technology on the resulting embryos to ensure that any that are implanted will produce healthy offspring.
Joe and Susan feel that this is the answer to their prayers: they both really want a family, but were afraid to have children who were sick and suffering. Now, they feel that their dreams have come true. They quickly make an appointment with the clinic director, who assures them that the gene editing necessary to ensure that their future children will be healthy is safe, simple, and accurate. He also hands them a pamphlet detailing the clinic’s services. The bronze package will ensure that their children are disease-free; the silver package will allow these disease-eliminating alterations to be passed on to their descendants; the gold package offers additional changes, such as the elimination of undesirable traits (like a tendency to be obese or shy) and the addition of desirable ones (such as athletic ability and enhanced intelligence); the platinum package allows future generations to also receive the enhancements chosen for the child. The gold and platinum packages have a check list of traits to eliminate and enhance, and the cost, of course, goes up the more options the customer chooses.
‘I’ve always wanted a kid that I could play basketball with,’ says Joe. ‘And could you imagine if we had a child who is both athletic and mathematically brilliant? We’d never have to pay for university!’ ‘It would be such a relief to have kids who are disease-free,’ notes Susan. ‘No worries about dementia, no risk of Huntington’s.’
‘We could have healthy kids who are geniuses as well as empathetic and kind,’ adds Joe. ‘I didn’t know that was even possible, but look at all these options! Who wouldn’t want all these things for their kids?’
Joe and Susan spend a few minutes perusing the list of desirable traits that they could select, and undesirable traits that they could eliminate. Finally, though, they have to come to a decision.
Should they add these desirable traits to their future children, as well as ensuring that they are born healthy? Should they delete traits that are undesirable, but not health-related? If they decide to go ahead with these design modifications, should they stop at the Gold package, or go all out, and choose the Platinum one?”
Readers, I encourage you to think about how you would answer these questions.
Featured image: Designer Baby store, Hackney, London, sludgegulper, CC BY-SA 2.0, via Wikimedia Commons.
Wolfville native Rachel Haliburton teaches philosophy at the University of Sudbury. Her latest book, The Ethical Detective: Moral Philosophy and Detective Fiction, was published in February by Lexington Books.