Ending the Test for Extra Chromosomes
Dr. Stanley Walzer is, by all accounts, no ideologue. An assistant professor of Psychiatry at the Children's Hospital in Boston, Walzer is said by his colleagues to be nervous and retiring. And when the conduct and substance of his federally-funded reserach came under fire last year, Walzer retreated from the political furnace that his study of chromosomal "aberration" had created at the Harvard Medical School, disappointing both his opponents and supporters, who had hoped for a more explosive resolution of the issue.
Walzer stepped quietly out of the controversy when he decided in May to discontinue blood tests of male infants at the Boston Hospital for Women and ended the screening process that in the course of five years had culled more than 80 baby boys with extra chromosomal material. Walzer says that his decision was not forced by those who objected to the research, and that it suits him to continue his observations of the children already in the program.
His observations are aimed at determining whether boys whose cells contain the extra shred of information--either an extra X or extra Y chromosome--develop abnormalities. It is the prospect that an extra Y component can be linked with criminal behavior--a notion ballyhooed in the mid-60s--that led the Justice Department and the Center for the Study of Crime and Delinquency of the National Institute of Mental Health to grant Walzer's investigation more than $465,000 over eight years.
His screening produced 45 to 50 boys with XXY karyotypes (chromosomal arrangements) and nearly as many of an XYY karyotype. Walzer and his co-researchers have concluded that certain disturbances, notably a slowness in speech development, are associated with the extra X chromosome, Dr. Park S. Gerald, professor of Pediatrics and a participant in the study, says. Gerald states more tentatively that the extra Y chromosome can be linked "on the average" with "more excitable, more emotional" behavior than normal. Gerald says that the severity of this deviance is yet to be determined, but he indicates that the studies he is involved in will substantiate an inherited basis for differences in personality between people.
Gerald explains, "This is just an aside, but if you talk to any dog-breeder, he'll tell you that every individual breed of dog has its own disposition or temperament. The analogy to human beings is actually good."
Walzer's investigations prompted the organization in 1969 of Science for the People, a group of scientists who charged that Walzer did not consider the failures of society, but blamed deviance on the genetic differences between individuals. Such research, the group has repeatedly maintained, is sponsored by the ruling orders in an attempt to explain away the poverty and oppression of the lower class by fixing its cause on inherent differences in the poor. Jonathan Beckwith '57, professor of Microbiology and Molecular Genetics, has been especially vocal in the dispute, although he says that the issue should not be confused with the personalities involved. It's not Beckwith versus Walzer, says Beckwith; it's the concerns of the people for the research they fund indirectly that is operant here.
Science for the People began pressuring Walzer in the early 70s, and the investigator's research procedures changed slightly over the next five years--partly, apparently, in response to the group's objections. Walzer's group has modified greatly the extent to which it requires informed consent of all participants in the study. Initially, patients in the maternity hospital were "informed" that male babies would be tested only because the hospital's brochure noted the tests, without reference to the charged nature of the study. When a test for the extra chromosome was positive, an investigator would approach the parents of the star-crossed child and, citing the chromosomal infrequency of the condition, ask to include the child in the study. It was at this point that informed, written consent was obtained.
The nebulous nature of just how informed this informed consent was became a major issue in the effort to halt the research. It was also the issue that attracted the attention of two outside organizations: the Washington-based Children's Defense Fund (CDF) and the Massachusetts Advocacy Center. Informed consent was a legal consideration, not as important to Science for the People as the political matters at the heart of research, but critical to CDF, a group whose concerns include the rights of children who are the subjects of medical experimentation. "The legal issue, while the narrowest, was also the best handle," Larry J. Brown, director of the Advocacy Center, says.
The main objection was that the doctor's announcement to a parent that her son was biologically abnormal was coercive because it left the parent, anxious over the development of her child, no real choice as to participation in the investigation. Either as a result of the outside pressure (Brown and Beckwith say) or as a result of increasingly restrictive legislation regarding informed conseent (Gerald says), Walzer began obtaining written consent from mothers to take blood tests on their boys.
This hardly solved the problem. The more crucial consent form--obtained from the XYY parents--did not detail the full extent of the investigation.
The vagueness of the form was particularly offensive to the CDF. William C. Smith '55, director of CDF's medical experimentation project, explains that failure to inform XYY parents of the potential "risks" associated with their child's development is deceptive and unethical, because the parents are not told of the true nature of the research. On the other hand, Smith says, to inform the parents fully of aberrant behavior they allegedly could anticipate is equally unethical and unfair to an innocent child. Such behavior patterns have not been documented, and saddling a child's parents with such a hobgoblin might only be, as even Walzer conceded in a grant application, "detrimental to the child's development." Parents overconcerned with their boy's manifestations of deviance might only insure that such deviance would appear, hopelessly prejudicing the findings of the scientists who come around twice a year to interview the family members.
The objections put Walzer in a double-bind: Because behavioral problems have never been definitively linked to the XYY karyotype, it is wrong to create delusory fears on the part of the XYY parents by telling them too much. Yet because such behavioral problems are on the minds of the researchers, the scientists should be honest to their subjects about the investigation.
The less lofty concern of the Mass Advocacy Center with the legal issues in the case brought the office of Massachusetts Attorney General Francis X. Bellotti into the matter last spring. Larry Brown, from the advocacy center, says that the center and CDF threatened Walzer with suit. "We stuck smartly to the legal issues and avoided medical issues," Brown recalls.
At about the same time--probably late April--Bellotti arranged a meeting with Dr. Julius B. Richmond, professor of Child Psychology and Human Development and the director of the Judge Baker Clinic where Walzer works within the Children's Hospital. Jonathan Brant, assistant attorney general, says that the Richmond interview came in late May, at a time when "no prosecutorial action was considered."
For on May 1, Walzer had ceased screening baby boys.
The CDF, the advocacy center, and Science for the People would all like to take credit for the end to screening because it would demonstrate for them the legitimate right of the public to affect the academic research it funds.
The first official body to consider the point was the Med School's standing committee on research, chaired by Dr. Dana L. Farnsworth, Oliver Professor of Hygiene emeritus. The Farnsworth committee approved the research. The matter was subsequently reviewed by that body which the National Institute of Health legally empowers within every institution to scrutinize the ethics of the research it funds: a human studies committee that must include community members. The committee at the Med School was chaired by Dr. Herbert Benson, associate professor of Medicine, and included three non-Harvard members whose "community" pedigree has been bitterly questioned by opponents of the research.
The Benson committee also approved Walzer's methods and research in a decision announced this January 10.
Beckwith's continued remonstration brought the Walzer research to a meeting of the Medical Faculty in mid-March, with a proposal that the faculty reopen investigation of the ethics of the research. The issue attracted the largest faculty turnout in years and apparently galvanized traditionalists who feel that the validity of a researcher's work should not be the consideration of his colleagues. The faculty voted, 199-35, not to disinter the issue.
That definitive vote, however, has proved less than definitive.
Neither the CDF nor the Advocacy Center was satisfied with the medical establishment's seeming disregard for the concept of informed parental consent, and Beckwith's continued agiatation on those political issues--notably clinical genetics and "psychotechnology"-- that he does not want to be "medicalized" has earned him enemies on the medical faculty.
And supporters of Walzer and his right to investigate the XYY matter would also like to see Walzer acknowledge the pressure of the outside groups. Even Park Gerald, Walzer's associate, foresees a "terrible precedent" and says that other colleagues of his, warned by Walzer's retiring example, do not want to touch controversial research.
"It's my belief that he [Walzer] was influenced by the pressure," Gerald says. "And I wish that he would state it because I have thousands of people across the country up in arms, incensed at Beckwith."
Walzer acknowledges that the struggle tired him out and claims he lost a year of research while fighting. And while declining to answer any questions about the matter, he adds, "Sure I'm tired and sure I'm downtrodden, but to conclude that that's why I stopped the screening is just wrong."
Gerald says that he is concerned for those doctors who will not pursue research in genetics for fear of ideological reprisal.
"They can't afford the time to argue with the Beckwiths of the world," Dr. Gerald says. "It's not whether Beckwith is right or wrong. It's that Beckwith has damaged the prospect of providing advanced patient care through innovation."