- Deciphering Genetics
The cops finally arrested Madame Marie for tellin’ fortunes better than they do.—Bruce Springsteen
“4th of July, Asbury Park (Sandy),” 1973
In October 1971, when The Hastings Center organized a workshop on ethical issues in human genetics with the Fogarty International Center at the National Institutes of Health, the Human Genome Project was not even a fond gleam in the workshop participants’ eyes. By that year, the Center had formed a “Genetics Group” to work on a newly established—and remarkably prescient—“Genetic Counseling and Engineering Program.” Genetic counseling was still in its early days. The creation of the first recombinant DNA molecule, the foundational technology for genetic engineering, would not be announced until the next year, while the Asilomar conference, convened to deal with the potential dangers of genetic tinkering, was four years in the future. But many of the themes of the Center’s work on genetics were already in formation. In genetics, what has been needed time and again is careful attention to the facts, looking beyond hype to get the story straight. The story has reliably turned out to be more complicated than it seemed on first inspection.
Under the leadership of the late Marc Lappé, the Genetics Group chose to focus on genetic counseling and the uses of [End Page 19] genetic information. (I am pinch-hitting for Marc, at that time associate for the biological sciences, who should have been the author of this essay.) Rereading the Center’s early publications in genetics, I was struck by the authors’ insistence, even then, on getting the facts right. It stood in contrast to some other work at the time that offered moral ruminations unmoored from the realities of the matter, and I believe it has become one of the hallmarks of the Center’s work throughout bioethics. Of course, getting the facts right was aided considerably by the many outstanding scientists and clinicians who participated in the group’s work.
Equally modesty-inducing are the impressive early mapping of ethical issues and the complex, nuanced analysis brought to bear on them. I will let Marc speak for himself:
Prenatal diagnosis promises then not only to reinforce tendencies towards denial of human frailty and fallibility, but also to raise the specter of parents who believe that they can and must guarantee the normality of their children. This is the one thing which prenatal diagnosis cannot do.
Marc’s words appeared early in 1973, just as the Supreme Court was announcing its decision in Roe v. Wade and Bruce Springsteen was releasing his first two albums. Marc and other participants in the Center’s work on genetics called attention to concerns that resonate today: the meaning of “selective abortion”—used to terminate pregnancies when fetuses have conditions such as Down Syndrome—for families and for people living with those conditions; concerns about genetic privacy; and worries about genetic discrimination. They appreciated the significance, and the philosophical depths, of debates over the ethics of abortion. It’s unlikely that anyone could have anticipated the political forces about to be unleashed by Roe v. Wade: abortion became widely and openly available to women grateful to have that option, but other Americans mobilized to fight what they regarded as an unmitigated evil.
Genetic screening, too, had begun to capture the imagination of state legislators. Massachusetts launched the first statewide newborn screening program for a genetic condition when it instituted routine testing of all newborns for phenylketonuria. Undiagnosed PKU, as it is known, damages a developing brain. Though the damage can be prevented or ameliorated by a diet that avoids phenylalanine, the diet needs to begin as soon after birth as possible. Soon other states followed Massachusetts’ lead.
Genetic screening programs have not always cleaved to the facts, however. By the early 1970s, for example, New York had one law requiring testing of urban—but not suburban or rural—schoolchildren for sickle cell anemia, along with a provision in its marriage license law mandating sickle cell testing for every applicant “who is not of the Caucasian, Indian or Oriental race.”
Right. What was it about urban children? Which “Indian” race did the legislature have...