By Tina M. Kibbe
Happy New Year! As another year ends, I wanted to take a look at three news stories involving eugenics and genetics in 2013 that you may have missed.
By Elizabeth Reis
It is exciting to read about promising new gene therapies that might make living with various disabilities easier or even render them extinct. Researchers at University of Massachusetts Medical School are working on a way to “turn off” the extra chromosome found in people with Down syndrome. If the gene therapy works as they hope, turning off the chromosome would mitigate some of the effects of Down’s. So far this possibility has only been glimmered in a laboratory dish, but ultimately the goal would be to turn off the extra chromosome prenatally, so that the brain would form without developmental and intellectual encumbrances.
By Adam Turner
The recent report from the Center for Investigative Reporting that California prisons failed to follow proper procedures in getting full consent and approval before sterilizing nearly 150 female inmates is both tragic and all too familiar. It raises questions about both the government's role in controlling citizen's childbearing decisions and the degree to which consent can be fully informed and voluntary for less privileged members of society who are often already considered irresponsible and, as many of these women reported, made to feel like they were "less than human" or "bad mother[s]" for saying no. It also calls up memories of America's long history of eugenics, during which these sorts of actions would've not only been acceptable, but lauded.
By Tina M. Kibbe
As an historian of science and medicine, I am always interested in both the histories of and the latest innovations in genetic and reproductive technologies. It is unbelievable how far we've come in such a relatively short period of time. These technologies are usually met with a mixture of awe and fascination or resistance and fear—it seems as if sometimes we are witnessing a glimpse into the future, yet it is actually happening in the here and now. I recently came across an article that actually made me stop and say, “Wow, really?” It’s about research into a new reproductive technology, but before I get to it, I want to do a brief background of revolutionary reproductive and genetic technologies that have sparked some intense ethical and moral debates. Specifically, three groundbreaking developments which have women/gender at their very core. Three developments that, as they were occurring, perhaps seemed like they were only futuristic, fantastic things that could never really happen . . . until they did.
By Adam Turner
Genetic counseling, as the previous two posts in this series suggest, has a lot to offer for navigating the tricky decisions things like prenatal testing and preimplantation genetic diagnosis raise. Well, in this post I'd like to make things a little more complicated. Enter the sheer messiness of history. I still believe genetic counseling is the best approach we have right now for helping prospective parents with hard choices, but it has a complicated -- and not so distant -- past that continues to shape counselors' ways of interacting with clients.
Surprisingly, I have been asked that question on more than one occasion. I have had students ask me during class and once after a conference presentation. The last time I was confronted with this question was in my summer class, when an earnest young student asked, "If you take the racial prejudice out, what's wrong with eugenics?" The student continued to press his point: "What's wrong with a program that has the goal of improving the human race and now that genetics is so advanced, surely we could make sure that people have the best genes and traits. Wouldn't that make for a healthier, happier population?" Hmm. So much to think about here. A program that uses cutting edge science to improve the human race by ensuring that individuals have only the best genes or traits so that people will be healthy and happy? Indeed, what is so bad about that? Who can say, "NO" to having the best genes, being healthy, and being happy? This is precisely the reason why eugenics was fairly easy "to sell" in the early twentieth century. For the sake of brevity, let's set aside the vast complexity of the science of genetics and pretend that we could just pluck out the "bad" genes and insert the "good" ones on DNA strands so that in a few generations we might have a utopian world filled with people swimming in the luxurious, healthy, and happy waters of the "best" gene pool. At this point, I have two questions. What determines which genes or traits are the “best,” and in this program of improving the human race, who makes the determination of which ones are the best? Me? You? Or what about a panel of experts? Afterall, we are talking about using science and a panel of objective scientific experts seems like an appropriate choice to make these important decisions. Or is it? While we ponder that for a moment, let's take a look back.
By Adam Turner Welcome to the second in a series of posts discussing genetics, prenatal testing, and genetic counseling. In this post we'll be thinking about blame and birth atypicality. Earlier this month the New York Times and other news media reported on the findings of a recent study published in the journal Nature. In some cases, the study suggested, the increased genetic mutations found in older men's sperm could make it more likely their offspring might develop autism or schizophrenia.
By Adam Turner What makes for a healthy baby? Is it an absence of something? Or is it a particular quality? Once we've defined it, how do we go about guaranteeing healthy babies? In a July 20 article in the New York Times' parenting blog, Motherlode, author Ellen Painter Dollar shared an emotional and insightful piece about her experiences as a person with osteogenesis imperfecta (OI, which causes fragile bones and other symptoms), a characteristic that can be passed on to one's children.