Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Michael S. Yesley
Coordinator, "ELSI" Program, Department of Energy, USA
I was very impressed by the story of the Zen minister that we heard yesterday morning - not only by the call for compassion made by the story, but also by the fact that a story, or narrative, can make a deeper impression than abstract concepts and is an effective way to convey a message. Perhaps many years from now we will remember the Zen minister's words more than any other words from this meeting.
I took another meaning, in addition to the need for compassion, from the Zen minister's story. It was a story of a poor individual, grievously injured, who was - quite understandably - incapable of living a peaceful life or even of knowing much about life around him, or so it seemed. He was almost without any perception or sensation of the external world, until his mother touched him. When his mother touched him, he understood, not only that it was his mother, but also how he should lead his pitiable life, what choice he should make for his limited ability to act. He was quite capable of understanding his obligations, what he should do, after his mother touched him.
I would not claim that we in bioethics have the ability of a mother to reach a child, but - drawing on the Zen minister's story - I suggest that we consider our purpose is not to tell people what they should do, but to try to touch them, to provide compassion and assistance, and then to let them make their own decisions and to respect those decisions. I believe the bioethicist's function is to assist in analyzing a problem and then to step back and honour the conclusion of the individual who has the heavy burden of making a life decision for himself or herself or a family member.
When the United States Congress first considered authorizing the Human Genome Project in the late 1980s, there was concern that taxpayers were being asked to support a "science of inequality" that could be used as a basis for discrimination and might raise other social issues as well. Acknowledging these possibilities, the National Institutes of Health (NIH) and the Department of Energy (DOE) pledged 3% of their respective human genome budgets for research on the ethical, legal and social issues (ELSI) that might result from advances in genetics. This allocation was later raised to 5% at NIH.
The resulting ELSI grant programs at NIH and DOE fund research projects on genetic discrimination, genetic privacy, and issues related to implementing genetic technology in health care. The ELSI programs also fund public education activities, including TV documentaries and high school curricula, intended to promote informed decision-making about genetic issues by individuals and society. About $7 million per year is allocated to the ELSI programs, from the total federal human genome budget of approximately $160 million.
The grant activities of the ELSI programs at NIH and DOE have operated on the model of government science funding, that is, the agencies invite applications for grants related to ELSI, and make awards on the basis of outside peer review and internal program review of the applications that are submitted. The choices of specific topics and methodologies are left to the applicants. The NIH grants have tended to focus on issues that arise in the clinical setting, while the DOE grants have concentrated on issues related to privacy of genetic information.
Grantees have included social scientists, lawyers, philosophers and theologians, physicians and other genetic service providers, and educators. Relatively few genome scientists have been involved in the ELSI grants. The research projects have typically been multidisciplinary and empirical, but some conceptual studies have also been funded. In addition to high school curricula and the educational TV series, the educational projects have also included public conferences and workshops on ELSI topics.
Unlike earlier bioethics policy efforts in the federal government, however, ELSI has no advisory commission at present. There is no entity that directs and reviews the ELSI research portfolio, determines the policy implications of the research, and makes recommendations to the appropriate authorities. But ELSI results are published: nearly 200 talks and articles funded by the program have been published in journals and book collections. Thus, like its science counterpart, the ELSI program adds to the body of knowledge. Like the results of scientific research, society may use the results of the ELSI program as it deems fit. The ELSI publications are listed in the bibliography that I mentioned at the outset.
In April 1992, the NIH ELSI program awarded a grant to the University of Maryland to hold a public conference later that year on the subject of "Genetic Factors in Crime: Findings, Uses & Implications." The award was based on a proposed agenda and a list of confirmed speakers that would provide a balanced, comprehensive review of genetic explanations of violent crime. The tentative schedule of the conference included sessions on: studies of the heritability of anti-social behaviour, comparison of genetic and environmental explanations of violent crime, the role of genetic information in the criminal justice system, the legal and moral issues related to genetic predisposition and criminal responsibility, and conditions under which drug therapy might be used for criminal behaviour.
More important than the range of topics in assuring a balanced analysis, the list of speakers included both proponents and prominent critics of genetic explanations of anti-social behaviour. Among the critics who would participate in the conference were scientists Jon Beckwith and Paul Billings, sociologists Troy Duster and Dorothy Nelkin, and historians Diane Paul and Philip Reilly (also an attorney and physician), all of whom have written extensively on the dangers of misusing genetic information. Those who reviewed and approved the grant proposal for NIH had every reason to expect that the conference would sharply question proposed genetic explanations of violent crime.
And yet within a few months after the grant was awarded, there was a public outcry that resulted in cancellation of the proposed conference and termination of the grant by NIH. What went wrong?
The problem was not created by the conference agenda or list of speakers that had been reviewed and approved at NIH. After the grant was awarded, however, the conference organisers prepared and distributed a publicity brochure. No one thought the brochure should be reviewed by the ELSI program administrators, who might have detected a potential problem. Unfortunately, the brochure contained a statement that, for several individuals and organisations, raised suspicions about the purpose of the conference. The offending language read as follows: "Genetic research also gains impetus from the apparent failure of environmental approaches to crime . . . . Genetic research holds out the prospect of identifying individuals who may be predisposed to certain kinds of criminal conduct, of isolating environmental features which trigger those predispositions, and of treating some predispositions with drugs and unintrusive therapies."
These words may appear accurate to some or, at worst, merely an overstatement of the possibilities for using genetic information to alter criminal behaviour. To others, however, these are fighting words, emblematic of a mindset and approach to social problems that blame individuals for the effects of the social circumstances in which they live and, at the same time, relieve the rest of society from responsibility for changing those circumstances. Furthermore, because the individuals who commit criminal acts are disproportionately members of minority races, the mindset that blames those individuals for their acts, instead of the social conditions that shape them, is seen as racist as well as wrong. That is, focusing on the individuals who commit violent crimes, rather than the social conditions that engender criminal behaviour, reflects preexisting racial prejudice against those individuals. Accordingly, when the language of the publicity brochure appeared to indicate that the purpose of the conference was to advance such thinking, concerned individuals and organisations, including the Council for Responsible Genetics and several minority groups, demonstrated publicly and loudly against the conference.
A response from NIH was not long in coming. Ignoring the conclusions of the panel of experts who had recommended approval of the conference proposal, and ignoring freedom of speech issues, Bernadine Healy, the NIH Director, suspended the grant, and it was subsequently terminated by NIH on the grounds that the conference had become too controversial. Thereafter, the University of Maryland appealed the termination of the grant to the Grant Appeal Board of NIH.
The Appeal Board raised two questions about the grant termination: first, did the University of Maryland fail to comply with the terms of its grant? and second, did the University fail to take appropriate corrective action in response to the public criticism? On the first question, a majority of the Appeal Board members excused the language of the brochure on the ground that it had appeared in the grant application that was approved by NIH. The Board majority said, "Perhaps this topic is so controversial that any brochure announcing such a conference would have aroused the same suspicions and hostility." However, two dissenting members of the Appeal Board pointed out that the offending language in the brochure was not taken from the description of the conference but excerpted from a background section of the grant application. Highlighting the controversial opinion that environmental approaches to crime have failed, in the first paragraph of the brochure, was not a constructive way to manage a sensitive issue, the dissenting Board members said.
On the second question, whether the conference organisers failed to take appropriate corrective action, the Appeal Board majority was satisfied with the University's submission of a revised brochure to NIH. The revised brochure eliminated the reference to the "failure of environmental approaches" and added a conference session on "Issues in the Application of Human Behavioural Genetics to the Criminal Justice System." Instead of responding to this revision, NIH had terminated the grant, an action that the Appeal Board found "unreasonable."
Thus, the Appeal Board did not consider the substantive issue whether biological explanations of violent crime are valid, but reversed the termination of the Maryland grant on procedural grounds. It directed that the grant be reinstated, in two phases: first, the University would produce a plan for a new conference, including the mechanism for advertising it, and second, after the National Center for Human Genome Research approved the new plan, the conference would be conducted.
Following the Appeal Board's decision, the Maryland conference organisers and NIH are negotiating a revised grant. In the first stage directed by the Appeal Board, they are studying whether it is now feasible to hold a conference on genetics and crime. If this question is answered affirmatively, the University and NIH will attempt to reach agreement on a plan for a conference. One of the University participants in this process told me that winning the appeal was a dubious benefit. Although the reversal of NIH's erroneous decision to terminate the grant was appropriate, it is quite challenging to plan a new conference on genetics and crime that will avoid another storm of protest.
As a result of the difficulties with the Maryland conference, NIH Director Healy convened a special panel to review the agency's portfolio of research on anti-social, aggressive and violence-related behaviour and to recommend how such research can be conducted in a "socially responsible manner." This portfolio includes approximately 300 research projects with a budget totalling $42 million. Only a small number of these projects are genetic, including studies of the genetic aspects of affective disorders, genetic and environmental influences on behavioural development, and characterization of genetic differences in social behaviour of mice.
To date, the special panel has met twice, reviewed the violence portfolio, and heard testimony about the research from several individuals and organisations. I have been informed that the panel is unlikely to criticize any of the ongoing research projects. However, it will probably suggest ways to avoid future criticism by involving representatives of the groups to be studied in the planning and conduct of research on violence. Thus, it does not appear that NIH will terminate research on violence but will take steps to assure that such research is sensitive, and is perceived as sensitive, to the rights and needs of the populations being studied.
What are the concerns of those who protested the Maryland conference? Ronald Walters, a professor of political science at Howard University, has identified some sources of the perception of threat to the Black community ("The Politics of the Federal Violence Initiative" unpublished). Since violence research targets inner city youth, who are predominantly Black and Hispanic, it is seen as "biological racism" associated with larger forms of racism within society. In addition, past violations such as the Tuskeegee syphilis study have created in the Black community a conspiratorial view of the establishment in general and the medical establishment in particular.
Walters sees some positive undertakings at NIH and related agencies in research on reducing drug and alcohol dependency, and mobilizing communities to intervene socially to reduce negative behaviour among youths. But he objects to the emergence of corrective measures associated with biologically oriented methods at the expense of social strategies. "Biomedical strategies have contended with social strategies for the solution to crime and violence for some time and when it appears that political leaders consider social strategies too costly, they resort to the biomedical model," Walters says. He faults the public health approach to violence for "treating the individual offender rather than the social system that produced him or her." According to Walters, the public health approach rests on the assumption that at-risk children resort to violent behaviour because they "have not been taught strategies to manage their increasingly disorganised environment." This is contrary to "the traditional presumption that crime and violence are a function of the social environment in which people live" and that "the best intervention is the availability and provision of productive life choices which would give individuals a valid alternative to violent or criminal behaviour."
Troy Duster, a University of California Berkeley sociologist who has conducted research and been a member of several panels on race and genetics, suggests that the heavy dependency of genetic studies of criminality on prison populations has led to spurious findings in the past and will likely do so again ("Genetics, Race, and Crime: Recurring Seduction to a False Precision" in Billings, ed., "DNA on Trial" (1992)). He notes a problem with the logic of these studies: they argue there is a genetic cause of crime but rely on prison populations that result from incarceration decisions shown to be a function of social, economic and political factors. The incarceration rate of Blacks in the United States has dramatically increased in relation to the incarceration rate of whites, from three times greater in 1933 to seven times greater at present. Obviously, six decades is far too short a period for the changes in relative incarceration rates to be explained by changes in the gene pool. Yet scholarly work suggesting a biological role in crime has increased during the same period. The possibilities for spurious findings of genetic causation of criminal behaviour are great, Duster believes.
The behaviour-genetics debate in the United States has been conducted at three levels: first, at the public level, at which actions are taken and words spoken for their symbolic or rhetorical value; second, in the scientific arena, where reasonable people may disagree about the validity of research findings, but the best explanations of the observed phenomena should ultimately be recognized; and, last, in the prefecture of policy making, which the participants in the political and scientific debate clearly wish to influence. The public discourse has been overheated but understandable. It has resulted in the postponement, and perhaps the loss, of an opportunity for scientific debate at the Maryland conference. Clearly there was reason to suspect the purposes of the conference, but some of the objectors to the conference and NIH (in its first reaction to the public outcry) gave virtually no opportunity to the conference organisers to correct the misimpression created by their publicity brochure.
The scientific arena of behavioural genetics is more closely tied to politics and policy than other areas of research, because valid findings - if they promise effective solutions to social problems - may be quickly turned into social policy. However, there has not yet been a good demonstration of genetic causation of violent crime. Further, the allure of genetic explanation has misled many in the past, and genetics has a history of misuse. Accordingly, scientific results in this area bear close scrutiny, and we can expect responses that scientists might consider premature from representatives of the social groups that will be hurt if invalid genetic strategies are substituted for needed social change.
Preparation of this paper was supported by a grant from the U.S. Department of Energy.