Heredity and Hope: The Case for Genetic Screening

"In some ways this brings us to my last book. Ruth Schwartz Cowan’s Heredity and Hope [2008]. It is a really interesting book, because it deals with cases in which what we might call eugenics is actually successful and non-threatening. She discusses beta thalassemia, a congenital or heritable disease that we know is particularly common in certain populations, particularly Greeks and Cypriots, and the attempts to reduce this debilitating and nasty disease. It was really afflicting these populations very, very seriously. Children who are born with this often don’t survive. “With really careful handling, Cowan argues, there is some value to the principles behind eugenics” What they have done, through a mixture of voluntary organisations, churches, and governments in Cyprus—it started out on the Turkish-Cypriot side and moved to the Greek-Cypriot side when it was successful—is to offer blood tests and counselling for couples, prior to marriage, certainly prior to conception, to see what the probability of them having children born with beta thalassemia would be. And then working from there to make decisions about having children. It has been hugely successful. So here’s an example of how with really careful handling, Cowan argues, there is some value to the principles behind eugenics. It is a really convincing and interesting argument that I was very sceptical of going into it, on the grounds that eugenics has been so stinky for so long it’s amazing to think of it having a positive effect, but that is why I wanted to include the book in there, because I think it is important to see her point of view. She’s an impressive historian of science who should be taken seriously. Right. It neither tells you not to have children nor does it say you can now choose the characteristics because you’d like to have a famous violinist as a child. It is not doing either of those things. It is not about consumerism, and it is not about coercion. It is some magical thing that is neither of those. The Americans tried to do something similar with sickle cell anaemia the 1970s and completely messed it up. They didn’t consult, they didn’t do it sensitively, and they started insisting that school children in certain places be tested for sickle cell, even though in fact a) there was no cure for the disease, so there was really no point in doing this, and b) the 1972 National Sickle-Cell Anaemia Control Act failed to distinguish between being a sickle cell carrier and actually having the disease. If you are a carrier, there’s nothing wrong with you, you just carry it. They didn’t make that distinction, so people were fired from their jobs, being tested for no good reason, and it was a really messy business. “The wonderful messiness of human variation is really important” So the American tried it and failed to come up with anything positive, but in Cyprus they have actually produced a useful, productive, constructive way of taking the possibilities of contemporary reproductive technologies and making it work for the population at large. I do. I think that the wonderful messiness of human variation is really important. I mean, wouldn’t it be boring if we were all the same? This is where disability activists are really interesting in talking about the idea of disability and what is constituted as disability, because the definition changes over time. We don’t really think of somebody who has, as you have, a congenital leg problem, these days as being disabled, but they would have in the 1920s. So all we will be doing is making decisions for future generations about what constitutes disability. Sally Phillips says her Down’s Syndrome kid can do all sorts of things, and he is a happy, wonderful child. Would you want to take that away from the parents or from the child? Get the weekly Five Books newsletter If you’ve got a kid who can’t survive without being in a bubble, maybe that’s different, but again, I just think that who are we to play God? I think it is completely different from, for example, a desire to eradicate smallpox or something like that. Completely different. “We’ve made our surroundings so bland. Do we really want to do that to the human race as well?” We’ve already done this in so many other ways, not with humans but with our surroundings: we have made everything so bland. Everywhere you go looks the same, the same businesses, the same ideas. Do we really want to do that to the human race as well? I don’t. I want variety. I want difference. Because the other thing is if we don’t have difference, the other dangers is that we then become intolerant without difference, and we know where that goes. We really know where that goes. Do we want intolerance? I hope not, I really hope not."