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The XYY Controversy (Continued)
by The Genetic Engineering Group
The Genetic Engineering Group Begins
In the late fall of 1972, the Boston Science Teaching Group of SftP began to make plans for a conference for local high school teachers with workshops on Science & Society issues, to be held in March 1973 in Boston.1The results of a survey showed that the issue teachers found most exciting and relevant for their classes was genetic engineering. As opposed to issues of other workshops such as nutrition, energy crisis, pollution, the population problem etc., it seemed that genetic engineering would not have appeared to be a problem confronting people in their everyday lives. While, for the most part, issues which come under this heading are not the most pressing problems which people face, the science fiction allure and the increasing publicity about new developments in genetics had students really turned on to the subject. Reluctantly, a group of high school teachers and local geneticists began to gather material for the workshop, doing research into a number of different areas. Over the months, the discussions in our group led to the preparation of a 25-page paper outlining our views on this subject. (This eventually became the basis for the Science Teaching Group’s “Genetic Engineering” pamphlet.)
We began to feel very strongly the increasing spread of an eugenics ideology directed against the poor, minority groups and supposed social deviants. The controversy over IQ and genetics is one of the most overt manifestations of this trend. We felt it was important to counter this ideology in a public way. After the successful conference in March, 1973, our group continued to meet to prepare an article which we hoped would get into the popular press. Circumstances led to our finally making an arrangement with Psychology Today, and our article (considerably hacked up by the editors) appeared in the June 1974 issue of that magazine.2Developing a coherent body of information and a political analysis on this issue resulted in more and more requests to hold workshops and give talks on the subject of genetic engineering. In the process, additional information was accumulated and passed on to us by people who learned of our existence.
One of the issues we had cited as an example of ideologically-influenced genetic research was the supposed correlation between the XYY male karyotype* and “criminal behavior” or, as Amitai Etzioni recently referred to it, “the so-called criminal genes.”3 This area of research seemed to be motivated by an attempt to pin the origin of social problems on people’s genes and the publicity surrounding the XYY studies reinforced a public ideology of “blaming the victim.” Despite ten years of research in the field, the most comprehensive and recent review concludes that “the frequency of antisocial behavior of the XYY male is probably not very different from non-XYY persons of similar background and social class.”4
In late 1973, people in the Boston area who heard about our group began to give us some details about a study being conducted at the Boston Hospital for Women. In this study the researchers were screening all newborn males for the XYY karyotype and then following the XYY children to detect any “psychopathology” = “anti-social behavior.” After analyzing the scientific literature in this field, we concluded that this area of research was in fact ideologically motivated and biased, and was scientifically meaningless. Much of it has been funded by the Law Enforcement Assistance Administration (LEAA) of the Justice Department and the Center for the Study of Crime and Delinquency of the National Institutes of Mental Health. Furthermore, the existence and continuation of such studies only serves to support the notion of a relationship between the chromosome constitution of individuals and certain societal problems. This study, in particular, had aspects which were offensive to many people who do not share our political critique. First of all, the doctors told most parents that their child was XYY, thus, almost certainly, creating anxiety and the potential for self-fulfilling prophecy and labelling. Secondly, the parents were lured into the study by an “informed consent” procedure which did not refer to XYY or a study, and ultimately promised medical (psychiatric) assistance. (For a more detailed description of the study and the XYY issue see references 55and 6.) Without these disturbing aspects of the study, we probably would never have been able to achieve the degree of concern in Boston nor the publicity we did.
Following Due Procedure
Our first thoughts were to attempt to arouse public opinion on the issue, by getting something into the media. Our Psychology Today article mentioned the study, but there was no reaction. We then made several contacts with the press but could arouse no interest. We then considered other possibilities, including leafleting outside the hospital. We finally rejected this idea, since we felt that we would be harassing pregnant women and thus probably receive negative reaction, if any.
It appeared then that our only course might be to protest the study officially at Harvard Medical School itself. As it turned out, this clearly gave us the opportunity to reach a much wider public than we probably would have reached otherwise. Since the study appeared to specifically violate Federal guidelines for studies involving human subjects, we felt we had a significant case to present before committees at Harvard Medical School. Our strategy was as follows: we were never particularly hopeful that Harvard Committees, consisting of Harvard doctors, would be prepared to halt the research of another doctor, even though Federal guidelines on such research allowed them to. Furthermore, we felt that ultimately this was an issue (as are all issues) which should involve as much public input as possible. Our long range goals, in addition to stopping the study, were to counter the XYY myth in a public way, and help to demystify this area of research and, by extrapolation, scientific research in general – to combat the myths of neutrality and objectivity. Our intention was to go through the committee procedures and, at their close, to publicize the issue and whatever decisions were made.
At the end of May, 1974, we submitted critiques of the XYY study to the Commission of Inquiry at Harvard
Since this article was written, we have learned that, as of May 1st., the research on XYY screening of newborns has stopped at the Boston Hospital for Women as well as in all other parts of the country. This is a result of the Boston controversy. While XYY research in general is by no means over, Science for the People should be encouraged by this and other successes, to see that actions based on informed radical analysis can bring about change.
Medical School, a sort of ombudsman committee. The complaints were quickly forwarded to the more “appropriate” Committee on Medical Research, a committee empowered to examine ethical issues of research.
The Committee was chaired by Dana Farnsworth, a psychiatrist. After a long delay, a hearing before the Committee occurred on October 4. Both the proponents and the opponents (us) presented their cases, and the general impression was that our criticisms had hit home. In fact, in a telephone conversation with Farnsworth shortly after this meeting, he stated that “the committee was more sympathetic to our position than to the proponents of the study.” But further conversations in late October and early November sounded more discouraging. First, it became clear that no matter what the Committee decided, it had no powers! It was a “forum” and its decisions had no force. Furthermore, Farnsworth’s tune began to change. The Committee would never consider making a decision which would result in the stopping of any research, and a suggestion that the screening at the Hospital be temporarily suspended was greeted with outraged statements about threats to “academic freedom.”
The ideological perspective of Dana Farnsworth can be gauged by his views on the general area of “psychotechnological research.” In one conversation, Farnsworth lamented to one of us a “tragedy” at UCLA. There his friend, Dr. Jolly West, had proposed the setting up of a “Center for the Study of Violent Behavior” which included projects on psychosurgery, XYY, Ritalin treatment of kids, etc. It was to be funded by LEAA. Unfortunately, according to Farnsworth, this center had been at least temporarily halted by protests of “far-out” groups. “Let’s not have the same thing happen here” was the implication.
The clear message – that our criticisms would have no effect, that the committee had no power, and that it had to pass through several other stages anyway – led us to reconsider our decision to hold off going public. In the meantime, one of the people doing the study, Dr. Park Gerald, had received a good deal of publicity for his claims that XYY kids had problems with “impulse control.” Two of us had written an article on the subject for the English journal, New Scientist. We decided to go ahead with its publication.6Furthermore, we contacted local newspapers and the New York Times, and on November 16 and 17, the story broke publicly. While the published stories differed from our original position, they did expose some of the issues and present some of the arguments indicating the lack of substance in the XYY myth. (Don’t forget, the link between XYY and criminal or aggressive behavior had been widely publicized, but little of the rebuttal ever hit the media. In fact, we have seen high school biology texts and a standard work on psychiatry [Freedman, Kaplan and Sadock] still proclaiming the validity of the myth.)
Our going to the press had the further effect of alienating a good many of the Medical School faculty members, particularly the hospital-based clinical professors. One of the researchers in the study, Dr. Stanley Walzer, stated that he had received a number of threatening phone calls vis-a-vis the study. While we had no knowledge of the source of these calls, and they clearly made our efforts more difficult, they were ascribed to us and further heightened the polarization at the Medical School.
On December 13, Dr. Farnsworth made his report of the Committee’s finding to the faculty. The essence of the report was that the study was fine and that critics of the study “may have used methods of questionable validity in an academic community.” A debate followed in which clinicians showed their outrage at this “attack on medical research” and a number of basic science faculty stood up to support our criticisms. In addition, it was revealed that the issue was now before the Human Studies Committee headed by Dr. Herbert Benson. Farnsworth called a press conference afterwards where they attempted to overwhelm the press with the big gun M.D.’s from various hospitals. Fortunately, the press was not so gullible and reports the next day were not unfavorable to our position and included the following quote from one of the doctors, “The atmosphere in society at this time is to be jumpy about the rights of the foetus, minority groups and so on.”
The Human Studies Committee
Every institution where research is done with human subjects is required to have a Human Studies Committee. This Committee is to receive every pertinent grant proposal before it can be submitted to a granting agency. The Committee must determine whether proper informed consent is obtained from the human subjects and whether the benefits of the study outweigh the risks. If such Committees decide against the study they will refuse to pass it on to the granting agency, and either the study will never take place or it must be revised to the Committee’s satisfaction. Further, such Committees are required to have members who will represent (among other things) community attitudes. Harvard’s Human Studies Committee had as non-Harvard members, a lawyer, a housewife who was also a trustee of Massachusetts General Hospital (a Harvard hospital), and a minister with close ties to Dana Farnsworth. So much for representatives of “community attitudes.”
The Committee very quickly did its routine – invited the XYY researchers to testify, obtained new documents and protocols from them and arrived at a decision on January 10, 1975 that the study was fine. They never invited any of the critics to present their point of view, to respond to the presentations of the XYY’ers, or to respond to the new documents. One member of the Committee resigned in protest over the functioning and the composition of the Committee.
Organizing at the Medical School
During the entire period from our first hearing of the XYY study until December, 1974, we had made little effort to mobilize people in our support. We followed the rules we seemed to have agreed upon, presenting the challenge to a “duly-constituted” Committee. Now, however, the publicity and the December 13 faculty meeting had aroused a good deal of support for us. With Harvard swiftly moving to quash the whole issue, we felt it was time to mobilize people at the Medical School. On January 23, we held a forum widely advertised in the Medical Area entitled “XYY – Why?” Around 100 people – students, workers, and faculty – attended, most of them supporters of our position. We used the forum as an opportunity not only to further expose the study at Boston Hospital for Women, but also to talk to the broader issues to which it was related. Our talks described increasing attempts to “medicalize” social problems so as to divert attention from the roots of such problems in the present economic class structure. Finally, we began the circulation of a petition calling for a reopening of the Human Studies Committee hearing, criticizing both the structure and the functioning of the Committee.
Over the next several weeks we gathered over 160 signatures on the petition from Medical Area people and on February 14, the petition was presented as a motion to the Faculty.
At the meeting on February 14, a brief discussion of the motion occurred and a vote was put off until the next meeting. However, a cryptic remark by one of the faculty members revealed a remarkable unknown part of the history of this issue. On following up the remark, we discovered over the next few weeks that when the Farnsworth Committee had voted on the study, a majority had voted that the risks outweighed the benefits! Farnsworth had misled the faculty, the press, and subsequently, we learned, the Benson Committee! A number of the members of Farnsworth’s Committee had been quite upset by this but could not bring themselves to reveal it publicly. They had also informed the Dean and members of the administration, but nothing had been done about it. It turns out that a good deal of Farnsworth’s report was his own creation and a number of people were involved in covering up this fact.
The Reign of Terror
On March 14, yet another faculty meeting took place, at which there was a debate between two proponents and two opponents of the study. Ultimately, our motion was to be voted on. Leading up to this meeting were a number of discussions between us and various faculty members. It became clear from these discussions that the hospitals exist as totalitarian fiefdoms. A number of non-tenure faculty members said they could not vote for us in public for fear of their jobs. One supporter spoke of already receiving a lecture. Even supporters in high positions were afraid to speak or vote for us, because it might ruin their relationship with other powerful clinicians. We asked for a secret ballot, but that was rejected. We attempted to point out the Farnsworth deception of the faculty, but the Dean quashed that. And, with no further discussion open to the general faculty, a vote was taken, and our motion defeated 199-35. A number of people abstained. We have heard recently that the position of a junior faculty member has been threatened as a result of his vote for us.
It’s Not Over Yet
One clear principle of Science for the People is that decisions on scientific matters and priorities are not neutral, but are, in fact, political decisions. We are struggling for a society in which all people will participate in the decisions that determine how science is developed and applied. Our contact with the media was an attempt to bring public pressure into the arena. It might appear that we have really failed in involving people outside the Medical School in our struggle. In fact, we have seen our actions to this point as only a stage in confronting the issue in a broader way. Over the last year, we have had contact with two public advocate groups, The Children’s Defense Fund and the Massachusetts Advocacy Center. These groups are now in the process of looking into a variety of avenues for challenging not only the Boston study, but also similar studies in other cities (Denver, New Haven, Baltimore and Wisconsin). They have contact with community health groups in the Boston area, and the nature of the study will be publicized among these groups.
Achievements and Lessons
On the surface of it, we seem to have accomplished very little. The study goes on as before. But we believe that our efforts have had a number of important results.
- The XYY myth is a component of the general attempt to assign social problems to biological or genetic defects of individuals. The IQ issue is very similar. Interestingly, some of those involved in XYY studies are also involved in a study to determine correlations between chromosome bands, race and IQ.7Another member of the same hospital has published on the genetic basis of “motor precocity” in Blacks and assisted others who published on the implied genetic basis of passivity in Orientals.8, 9 We have had the opportunity in the press and in our New Scientist article to combat the XYY myth. Furthermore, we find that the researchers themselves are now talking publicly in much milder terms about the issue.
- We have heard statements from people close to the project, that the screening is soon to stop. In addition, one of our group learned from an XYYer at another medical school that the publicity we achieved has had a restraining effect on others intending to continue or start new studies.
- The consciousness of a number of people at the Medical School has been raised. Many people attracted by their initial disgust at this particular study, have been politicized in the process. Particularly, the medical students have had their eyes opened. This first year medical student class appears to be one of the most vocal and critical we have ever seen. Large numbers have begun to challenge doctors in clinics who treat patients like animals. This is the first time this has happened. The constant exposure to this kind of behavior by doctors is one of the major techniques for indoctrinating medical students into an elitist, professional mold. Furthermore, two first year students have applied for a grant to study the history of the XYY issue and how and why it took hold in the public’s mind.
- Our group is continuing to meet and we are holding a large advertised meeting on May 13 to increase public awareness of these issues. The meeting is entitled, “The Politics of Research: by Whom, for Whom, on Whom?”
- We are receiving many invitations to speak on the XYY issue to school, university, and other groups. This allows us to point out the connections between this issue and the problems of power, control and class structure.
- The XYY controversy has also raised the broader issues of control over science and academic freedom. We have had the opportunity to point out that the kinds of science which are done and the directions which science takes in this society (as in any society) are heavily determined by forces outside of the science community. First, funding plays a major role in determining which areas of science are pursued. XYY research is a good example, since without the special interests of the Justice Department and the Center for the Study of Crime and Delinquency, there would probably be many fewer projects of this sort. Thus, the ideological imperative of those in power to divert people’s attention from the roots of social problems in our economic structure results in the expansion of a particular area of scientific research. Another obvious example of this control over research is the recent massive switch of funds from some biomedical areas into cancer research. Second, there are already limitations put on research by the ethics of the culture, now formalized by federal guidelines on human experimentation. It should be pointed out that many studies (e.g. on IQ and genetics) which are not affected by these guidelines result in a good deal more harm to people than those studies which are forbidden by the regulations. Third, the dominant values of the culture set limits on the kind of research which is done.
People must recognize that all societies have a right to set their priorities and to determine what the nature of their scientific enterprise will be. In our society, the major determinants of scientific research are the interests of the ruling class, which controls the government and industries and thus funds areas which it sees as promoting its own interests. Major areas of this research are then used for purposes of social control (e.g. psychotechnology, genetics, computers, etc.). We hope that with the increasing protests in the last few years over such areas as IQ and genetics, psychosurgery and the XYY male, people will see that they should begin to exert their rightful control over science. Science and technology in this society play a major role in convincing people that they have no control over their own lives. As we begin to demystify science, and to work with those outside our institutions who are suffering most at the hands of science, to exert control over science, we will be moving toward the day when people will recognize their right for control over the society itself.
The Genetic Engineering Group
- D. Jhirad, “Science Teachers Hold Successful Conference in Boston;” Science for the People, V, 3, p. 40.
- F. Ausubel, J. Beckwith and K. Janssen, “The Politics of Genetic Engineering: Who Decides Who’s Defective?” Psychology Today, Vlll, June, 1974, p. 30.
- A. Etzioni, “The ‘Slippery Slope’ of Science,” Science, 183, 1041, 1974.
- D. Borgaonkar and S. Shah, “The XYY Chromosome Male – or Syndrome,” Prog. Med. Genetics, X, 135, 1974.
- D. Elseviers, “XYY: Fact or Fiction,” Science for the People, VI, 5, p. 22.
- J. Beckwith and J. King, “The XYY Syndrome: A Dangerous Myth,” New Scientist, 14 Nov. 1974, p. 474.
- S. Patil et al; Amer. J. Human Genet., XXV, 58a, 1973.
- T.B. Brazelton, “Babies to the Rescue,” Harvard Magazine, December, 1974, p. 16.
- D.G. Freedman and N.C. Freedman, “Behavioral Differences Between Chinese-American and European-American Newborns,” Nature, 224, 1227, 1969.