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Creighton history professor's book looks at evolution of medical genetics

Many think of eugenics as a scientific and social movement of the past, which quickly fell out of favor after World War II. In recent decades, however, the specter of eugenics has been making something of a comeback as tests for genetic disorders have become more readily available to expecting parents.

So argues Creighton University history professor Andrew J. Hogan, PhD, in his new book, Life Histories of Genetic Disease, released in October by Johns Hopkins University Press. Hogan says a new eugenics, by other means, was enhanced by the ambitious project to map the human genome, an effort now making it possible for parents to order a battery of prenatal tests to determine whether or not a fetus has certain genetic diseases.

Hogan said the results of the Human Genome Project — funded in part based on the promise of gene therapy for people with diseases typed as genetic — have steadily trended into the realm of prevention, in an echo of early 20th century eugenics, which ostensibly operated as a public health program administered by governments.

“Medical geneticists after World War II, after Hitler, claimed to be starting anew,” said Hogan, who began his academic career with an undergraduate major in molecular biology before turning his attentions to the human and social face of science and switching to history. “Postwar approaches to medicine focused on the eventual promise of gene therapy, involving the identification of discrete genetic disorders, and attempting to cure them by fixing their causative mutations. In practice, as gene therapy remained on the distant horizon, medicine geneticists turned to the prevention of diseases through prenatal testing and abortion.”

In light of this history, Hogan’s book probes whether medical genetics, in a novel configuration emphasizing parental choice, was a new pursuit or a continuation of some of those earlier eugenic goals.

The 1960s saw the first successes in identifying genetic mutations in fetuses and inspired a generation of researchers to think about ways to fix mutations through gene therapy. Government funding helped fuel those early ambitions with a culmination occurring in the 1980s with the onset of the Human Genome Project, funded through the National Institutes of Health (NIH).

“Even with all that government funding, gene therapy was for the most part a failure,” Hogan said. “What did come out of this investment was a giant infrastructure of genetic mutations, which proved more useful for preventing conditions through prenatal diagnosis and abortion, than for curing them.”

Since 2000, genetic technology has improved to the point where, indeed, the entire human genome, the map of each individual person, can be scanned for those mutations. The infrastructure of genetic mutations that has been compiled is then used to interpret these findings.

Hogan said his book — subtitled Patterns and Prevention in Postwar Medical Genetics — takes issue with abstract conceptions of the genome as a digital information set, instead looking at the genome as comprising tangible, physical objects, the human chromosomes, which contribute to the make up a complex, physical and clinical subject: individual human beings.

“Many people have come to believe that we’re just a few molecules or nucleotides away from knowing everything there is to know about you,” he said. “This book pushes back against that notion. Physicians identify and understand genetic disorders by examining visible bodily patterns in the clinic. The same can be said about chromosomes as physical things. For the medical geneticists who study them, chromosomes are really like a neighborhood. Geneticists come to know their familiar landmarks and places. These physical, visible chromosomes are the true day-to-day work objects of medical geneticists, not just the abstract genomic dataset of ATCGs (the nucleobases of adenine, thymine, cytosine and guanine found in DNA). The visible clinical and chromosomal aspects of genetic medicine have not been erased in the molecular genetics era.”

Since the Human Genome Project began in the late 1980s, there has been an expanding set of ethical questions for parents and physicians about genetic testing and, in the face of a potential genetic disorder found in a fetus, what the next steps are.

“Professionals who provide prenatal genetic testing and counseling are often unsure what to do with all of the results they generate. Some believe that it is best not to tell parents everything, but for others, withholding information raises issues of patient consent and autonomy,” Hogan said. “The parents unexpectedly end up in an experiment of sorts. Findings of unknown clinical significance are often identified, which cannot be clinically interpreted, but represent valuable new targets of medical genetics research. In the midst of all this, parents are left to make a wrenching decision about continuing a pregnancy, with little or no certain information on hand.”

Hogan’s book draws on historical case studies of Prader-Willi, fragile X and DiGeorge syndromes and examines how such diseases were “made genetic” and reliably diagnosable prenatally. Hogan‘s next step is to continue this exploration in a follow-up project looking at how disabilities have come to be interpreted more positively in US society since 1970, and how these perspectives have influenced narratives of disability in the medical community.

“There has been a shift among some clinical professionals to move away from characterizing conditions like Down syndrome as a tragedy for families,” he said. “They instead have shifted to addressing inborn forms of disability as unexpected news, as a form of human variation that should be valued. I want to look at how these new narratives of disability awareness and support have influenced medical practice. Specifically, I examine the roles of genetic counselors, clinical psychologists, and pediatricians in championing more positive perspectives, rather than encouraging disability management through preventive abortion or institutionalization.”

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