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Actions on XYY Research
by the Genetic Engineering Group
Genetic Engineering Group Acts to Stop XYY Study
The September issue of Science for the People carried an article describing a genetic screening project in progress at a Boston Hospital, in which newborn infants are tested for the presence of an extra Y chromosome.
The psychological and behavioral development of those with the extra Y chromosome (1 in 1000) is followed by a group of psychiatrists, to see if the children develop “antisocial” behavior. The study came to the attention of the Genetic Engineering Group (GEG) of Science for the People. We were opposed to this kind of study for numerous reasons: 1) There is little or no evidence for a causal relationship between the XYY chromosome constitution and so called antisocial behavior. 2) The intervention of the investigators is more likely to damage than to aid those in the project (the great majority of XYY males are normal individuals), because the investigator’s intervention is liable to be a self-fulfilling prophecy. 3) Many parents of these children are drawn into the study by subtle deceit, not by truly informed consent. 4) Such studies represent one facet of a larger movement to attribute social unrest to intrinsic genetic factors, rather than to oppression and unjust social conditions.
In addition to bringing such studies to public view, the GEG decided to also proceed through hospital channels. Critiques were prepared and presented to the Harvard Medical School, with the request that the continuation of the study be reviewed. This led to a hearing on October 4 before a special committee on inquiry of the Medical School.
Though most of us are scientists, none of us are professionals in the precise area of the research. Thus our actions were surprising and upsetting to the Medical School Faculty, who are steeped in their own elite professionalism. In particular, the Faculty Professionals tend to view any criticism of their action as a threat to “academic freedoms” even if these actions involve harming human subjects.
We presented our critique, and also offered witnesses, such as an admitting aide at the hospital. The other side presented their defense, much of which served in fact to point up the questionable propriety of such reserch.
Up to a point, our criticism was effective. Most members of the committee recognized that truly informed consent was not being ·obtained. However, our criticism struck more deeply in questioning the propriety for much clinical investigation. The committee was clearly worried that if one study was stopped, the same could happen to other investigations with human subjects. The power of research precedent was also raised in the opposite context; the researchers implied that the existing screening programs (e.g. for the metabolic defect phenylketonuria — PKU) justified their chromosomal screening studies. This made the importance of preventing even this small study clearer to us, since it will obviously be used to justify larger intrusions into the lives of people.
Among the revelations that emerged during the proceedings was the fact that the research is supported by the Crime and Delinquency Division of the National Institute of Mental Health.
Aspects of our case against the study have been reported in the New York Times (November 15, 1974), the Boston Globe (November 16, 1974), and on local Boston television. Media coverage is one way of informing the public of research programs which endanger their subjects and benefit no one (except perhaps the investigators in their career pursuits).
At the time of this writing the committee is deliberating the issue and is scheduled to report out their findings about Christmas time. If the committee decides to permit the study to continue, the GEG will continue the fight and try more energetically to bring the issue to public attention via newspaper coverage, magazine articles, etc. We have recently published a more extensive analysis in New Scientist, Nov. 14, 1974.