- Giovanni Monte, Ph.D.
National Cardiovascular Center, 5-7-1 Fujishiro-dai, Suita, Osaka 565, Japan (FAX Int+81-6-872-7485)
and Thomas K. McElhinney, Ph.D.
Hannemann University, Dept. of Humanities & Social Sciences, Mail stop 503, Broad & Vine, Philadelphia, PA 19102-1192, USA (FAX Int+1-215-246-5347)
Eubios Ethics Institute Newsletter 2 (1992), 29-30.
More than 200 individuals representing a wide spectrum of religions and professions from North America, Europe and Japan met in Houston, Texas, on March 13-15, for the second National Conference on Genetics, Religion and Ethics. The conference was sponsored by the Institute of Religion, Texas Medical Center, and Baylor College of Medicine, Houston, and has been supported through grants from the US Department of Energy, National Institutes of Health (NIH), the Episcopal Church Foundation and the Linbeck Foundation. A distinctive role is being played by the Institute of Religion in the US Human Genome Project. Some of the thousands of researchers who are exploring genetics have joined with ethicists and theologians in the study of the many implications of this massive project. The NIH's role in the human genome project is managed by its National Center for Human Genome Research (NCHGR), established on Oct. 1, 1989, directed by James Watson.
Speakers of the Conference
Among the outstanding persons who addressed the conference were Dr. W.French Anderson, chief of Molecular Hematology Branch, National Heart, Lung and Blood Institute, NIH; Dr. C.Thomas Caskey, director of molecular genetics, Institute for Molecular Genetics, Baylor College of Medicine (also the project's principal investigator); Dr. Ruth Ellen Bulger, head of the Division of Health Science Policy at the Institute of Medicine, U.S. National Academy of Science; Dr. James M. Gustafson, the Henry B. Luce Professor of Humanities and Comparative Studies at Emory University in Atlanta; Dr. John Habgood, Archbishop of York, of the Church of England. Twelve persons from various disciplines with diverse theological perspectives responded to these major speakers. Summaries of working papers of the four groups that have been meeting throughout the past one and one half years in Boston, Chicago, Houston and Washington D.C were presented. Panel discussions were also conducted at the conference.
Houston group Paper
The goals of the Houston group paper were: 1. To consider the possible implications of the HGP for clinical practice and genetic counseling; 2. To discuss the responsibilities of physicians and scientists to educate the broader public about the HGP; 3. To develop a series of recommendations on how to educate (or re-educate) particular constituencies, especially clergy and pastoral personnel, in several areas of genetic counseling. Their conclusions included: A. The need for greater sensitivity by clinicians; B. The need for religious professionals to become more involved; C. The need for broader clinical and public education; D. Public policy concerns.
The Houston group's reflection is that, as the HGP is completed, and as the revolution in genetics proceeds, the nature of normalcy and abnormalcy, and of health and disease, will grow ever harder to define, especially at the margins. The central challenge posed by clinical genetics to our collective wisdom may then be to our capacity to make reasoned choices and just distinction between real disease and mere difference, between what we must do and what we might do.
Boston group paper
The context of this paper was genetic counseling; to study the application of the discoveries of the HGP to prenatal diagnosis. In the case of the diagnosis of an understood genetic disease, a couple frequently has few good choices. The range of options include: avoiding pregnancy completely, the use of IVF or AID, some therapeutic interventions (some of which can resolve the problem and some of which can provide symptomatic relief) or termination of pregnancy. They assumed that since the genetic counselor is trained to be non-directive in presenting the findings of the diagnosis, the information provided is also value neutral. It is important to understand that at the core of our nature we are created finite beings. This grounds the reality of our being co-creators.
That wisdom stands independently of any of the specific claims and arguments of the magisterium or of any theologians. Such wisdom needs attention, particularly in light of the new knowledge and capabilities that will flow from the HGP. The HGP holds the promise of being one of the most significant events in science and medicine in our lifetime. The project will reveal a profound vision of our human nature and its components. We will be dealing with both the applications and implications for decades to come.
Washington group paper
They undertook the task of considering religious and theological attitudes toward genetic intervention and alteration of life forms. In order to draw out the attitudes of persons from different religious perspectives a questionnaire was developed. At the time of the Houston meeting the first three responses had been received, each a significant review of the issues. The survey work will continue in order to accumulate more data for presentation as a publication. The questionnaire contained three major sections: 1. Background issues on creation/co-creation related to the HGP from a theological perspective (God as creator and God's creation, Understanding of the world, the relationship of God and human beings to the world); 2. Key concepts in the interplay of genetics and theology on being human (Person/humanhood, Parenthood, Kinship & Lineage, Human diversity and Equality, Identity, Integrity & Uniqueness, Health & Disease); 3. Methodology (including the acceptability of the HGP, of intervention in plants, non-human animal, and humans).
Chicago group paper
They were assigned the duty of reviewing the issues for religious communities from the HGP. They approached their task by having members of their group survey various religious traditions for responses to specific issues; by reviewing the statements of major medical and scientific associations; and by inviting authors in the Park Ridge Center's Health, Medicine and Faith Traditions (Illinois, USA), to comment on the preliminary survey of the issues and to provide reflections from their respective positions. The five major issues that were addressed were: social and political issues of access to, and use of, genetic knowledge; human identity and self-worth (who is the human?); Society and the pursuit of knowledge; Abortion, therapy, eugenics and reproductive technologies; and clergy and lay education on genetic issues.
In their report they concluded that the religious communities can do "significant and important work". Religious reflection on human identity can contribute to judgements arising from new knowledge about the human. The pursuit of knowledge is itself a question for religious reflection as a re decisions to be made about reproduction and procreation. Both clergy and laity need education about genetic issues. They concluded, "The HGP is fraught with possibilities both for good and for ill. religious communities have the resources to address the crucial questions. The challenge is ours whether we welcome the moment or not. Many will be listening for what we have to say".
A summary statement was presented at the end of the conference in an attempt to define the many issues that had arisen and to highlight the preliminary concerns for some religious and human values that seem to be crucial as guides for further work in genetics. The draft that was presented was critiqued and will be circulated in a revised form to participants before becoming part of the final publication that is expected from the two Houston meetings. Of major importance from the two meetings was that medical and scientific persons and religiously trained professionals from many faith traditions engaged in serious conversation with one another, and that this conversation is expected to continue and expand. A strong consensus among the participants centred on the role that religion has in helping to define and refine values relevant to political, social and scientific implications of the HGP and on the need for the religious communities to become more aware of the present impact and future potential of the genetic revolution that is occurring.