This is a reprint of a post I wrote for Nursing Clio in November 2012. It is the third of a three-part series on genetics and genetic counseling.
Genetic counseling, as the previous two posts in this series suggested, 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 and their decisions.
A Little Review
In the first post I shared a little bit of the history of genetic counseling in the United States and gave some examples of how, today, it can help prospective parents understand why they’re being tested and what those tests might mean. The second post discussed the history of blame and disability more broadly and introduced the fact that ideas about what disability means have changed over time — often significantly.
I’ve argued that genetic counseling has the potential to address feelings of blame, guilt, and confusion in the face of genetic testing results. Further, it can help answer questions like: What will life actually be like for parents and their children? What do genetic tests say and what don’t they say? What are the options after having a test?
My optimism about genetic counseling, evident in these two posts, is tempered by the fact that it has a complex and challenging past with origins in eugenics ideology that have influenced the way counseling is provided today. In a sense what I’m suggesting is that genetic counseling still has a lot of issues that need to be talked about and worked on, but that it’s way better than nothing.
Lets take a look at what I mean about how eugenic ideas shaped genetic counseling.
Most of the first genetic counselors in the 1940s, 1950s, and 1960s were human geneticists, but the origins of human genetics lay in eugenics. Early genetic counselors identified self-proclaimed eugenicists like Charles Davenport, founder of the Eugenics Record Office at Cold Spring Harbor — one of the nation’s leading eugenics institutions between 1910 and the 1930s — as some of the first human geneticists in the United States. And four of the first five presidents of the American Society of Human Genetics, founded in 1948, were also board members of the American Eugenics Society. Human geneticists tried to distance themselves from aspects of the traditional eugenics movement, particularly its racial prejudices and some of its scientific methods, but were still concerned about the eugenic effects of their work. They worried about what effect their counseling might have on the population as a whole.
Genetic counselors, partly to distance themselves from traditional eugenics, adopted a non-directive approach to counseling their clients. They refrained from giving specific recommendations about whether or not clients should have children. At the same time, though, they reassured themselves that their counseling would have a gradually positive influence on the “gene pool.” (This reliance on individual decision-making gave prospective parents an outsized role in shaping the development of genetic counseling to focus on their concerns, and would later contribute to the client-centered nature of genetic counseling in the 1970s to today.)
Early counselors could console themselves that genetic counseling would ultimately help make a more “fit” population because they expected their clients to make “rational” decisions. Responsible, rational, prospective parents, early genetic counselors believed, would do everything they could to ensure “normal,” healthy children. They partly based this expectation on the belief that many inherited differences were diseases that any “normal” person would want to avoid.
Lee Dice, a driving force behind the creation of the Heredity Clinic, in Ann Arbor, (one of the first places in the country to offer genetic counseling) was one of many genetic counselors who wanted heredity clinics set up all over the United States to help couples make informed, “rational” decisions about whether or not to have children.
Dice and his peers expected such clinics to meet the needs of clients, but believed they could also solve a problem that many geneticists thought threatened modern society: thanks to modern medicine, Dice explained, “many individuals who carry serious hereditary defects survive to transmit their harmful genes to their offspring,” thus increasing the incidence of those genes in the population. “Segregation or sterilization of defective persons,” he acknowledged, could be an effective antidote if implemented on a large scale.
Dice acknowledged, however, that “no sane geneticist” would accept the degree to which such a program would infringe on the “liberties of the people.” The decision had to remain with the clients. “Voluntary abstention from reproduction by those persons who carry hereditary defects,” Dice argued, “is consequently the only practical method for eliminating any considerable number of harmful genes from the population of a democracy. With only rare exceptions,” he continued,
“every person is interested in his heredity. From my experience in giving advice about heredity to families in all walks of life I can affirm that every parent desires his children to be free from serious handicaps and to be physically and mentally well endowed. If there is known to be high probability of transmitting a serious defect, it would be an abnormal person indeed who would not refrain from having children.”
The success of this system, Dice noted, would be “dependent upon each family being given dependable advice” from organizations such as his own Heredity Clinic. Two unspoken assumptions at the heart of this argument deserve particular notice. First, Dice relied on a presumably universal definition of normal and abnormal. Second, there was no space in his worldview for a parent who would accept the possibility of a child being born with what he perceived to be an unacceptable genetic difference.
This brief history highlights the ways that parents’ expectations of both pregnancy and the role of science in their lives were changing. Women in the 1940s, 1950s, and 1960s were more likely to seek the advice and care of an obstetrician or a physician than they had been in previous decades, and many Americans in the mid-twentieth century were more likely to perceive science and medicine as responsible for making sure that they and their families were healthy and happy. Genetic counseling originated in the minds and the professional literature of human geneticists, but took its shape from the interactions between geneticists and the would-be parents who took their questions, concerns, and hopes by foot and by mail to the nation’s new heredity clinics.
Back to Today
So what does this have to do with today? Genetic counselors don’t talk (or likely think) like this anymore, and commitments to patient/client autonomy are much stronger now than they were when first developing out of the “non-directiveness” of the mid-20th century. But in other ways we still have a tendency toward expectations of “rational” decision making from would-be parents.
Consider a situation where a deaf couple wants to have a child that is also deaf. Would this be a problem? Is it any different than selecting, instead, for a hearing? This isn’t actually a thought experiment: this very question caused significant controversy in 2008 (see, the 2008 case, a brief Atlantic post, and a longer post by Katja Grace). And what about a couple whose genetic analysis or prenatal test suggested a strong chance of Down syndrome, for example, and who proceeded to have a child with that condition. Were they irresponsible?
A question we’re left with is: how non-directive can genetic counseling be — how autonomous can even the most “fully informed” consenting clients be — when certain decisions may be perceived as irresponsible, irrational, or wrong (and, perhaps, health insurance or services denied on these grounds)?
1. Sheldon C Reed, “A Short History of Human Genetics in the USA,” American Journal of Medical Genetics 3, no. 3 (1, 1979): 288–291; F. Clarke Fraser, “Introduction: The Development of Genetic Counseling,” Birth Defects Original Article Series 15, no. 2 (1979): 7; Diane Paul, “Eugenic Origins of Medical Genetics,” in The Politics of Heredity: Essays on Eugenics, Biomedicine, and the Nature-Nurture Debate, ed. Diane Paul (Albany: State University of New York Press, 1998), 138.
2. Daniel J. Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity (Berkeley: University of California Press, 1985), 225.
3. Lee R. Dice, “Heredity Clinics: Their Value for Public Service and for Research,” American Journal of Human Genetics 4, no. 1 (March 1952): 1.
4. Ibid., 2.
For further reading on this topic, see Alexandra Stern’s new book, Telling Genes: The Story of Genetic Counseling in America (Baltimore: Johns Hopkins University Press, 2012). This talk by Michael Sandel also brings up some interesting points about how genetic technologies can shape ideas of “good citizenship.”