Bioethics and Humanities Research: Genetics and Worldviews

Workshop Summary

Bioethics and Humanities Research: Genetics and Worldviews
National Human Genome Research Institute

Bethesda, Md.

July 2, 2002

Background

This one-day workshop examined how studies supported by the Ethical, Legal and Social Implications (ELSI) Program at the National Human Genome Research Institute (NHGRI) that explore how genetic knowledge interacts with concepts of identity, human nature, responsibility and justice, can most effectively contribute to broader discourse on these issues and to the development of sound health, social and research policies and practices. Laurie Zoloth, professor of ethics and director of the program in Jewish studies at San Francisco State University, moderated the meeting, which brought together 30 philosophers, theologians, historians, social scientists, legal scholars, policy developers, consumer advocates and genetic researchers to discuss these issues.

In preparation for the meeting, each participant was asked to provide his or her thoughts on: 1) how to gauge success for studies exploring these issues; 2) how the findings of such research can be made more relevant and accessible; and 3) emerging issues that will need to be addressed immediately and in the future. These suggestions were summarized and provided to the participants before the meeting.

The meeting was built around the further discussion and refinement of the responses to these three questions. The following report summarizes these discussions.

Framing the Discussions

The ways in which genetic knowledge interacts with individual concepts of personal identity or social justice reflects the background beliefs that the person brings to the encounter. There is a widespread sense that each one of us holds particular faith commitments, considers others from a particular social position, and understands causality, facts and priorities in particular ways. This constellation of basic beliefs and values is sometimes called the individual's "worldview." Worldviews will both influence and be influenced by the information that will flow from the complete human gene sequence. It is the disciplines of the humanities and social sciences that have traditionally studied and interpreted human beliefs and values, and thus it is to those fields that NHGRI is turning for advice on how to pursue this "worldview research".

Measuring Success of Bioethics and Humanities Research

The following is a schema for determining the success of ELSI Bioethics and Humanities research in this area was proposed by Eric Juengst and further refined by the meeting participants.

Type of Research	Genomics Research	Humanities Research	Success Criteria
Tool-building	Maps and Sequences	Contexts and Concepts	Are they used?
Substantive	Functional Genomics	Normative Analysis	Is it: Well-justified? Robust? Provocative?
Applied	"Genomics to Health"	Research "ELSI to policy" research	Does it translate ideas into applications?
*Product Development	Biomedical Products(by product-makers, i.e. industry)	Public/Professional Policy(by policy-makers, i.e. governing bodies)	Does it sell? Does it help?

* This will be determined by industry, policy makers and governing bodies, not NIH.

This schema identifies three broad types of research in both basic biological genomic research and ELSI research. The first type - tool building - can be seen in the development of maps and sequences by genomic researchers, and in the development by ELSI researchers of standard and well defined contexts and concepts for the identification, clarification and examination of the implications of genomic research. The primary measure of success for these types of ELSI projects is how useful the analyses are to other ELSI researchers and to what extent these analyses are incorporated into future work. Measuring success for this type of research is a long-term project since the results of the research are not seen in the short term.

The second type of research - substantive analysis - is represented in the genomics community by research looking at how genes function (also called "functional genomics") and in the ELSI community by normative analyses to better understand the interplay between genetic information and the ethical issues and values of individuals, groups and societies. Successful research in this area can be determined using standard scholarly measures of the quality of the analysis in terms of how well justified, robust and provocative it is.

The third area - applied research - is exemplified by "genomics to health" research that translates the findings of genomic research into information and technologies used in the development of biomedical products, diagnosis and treatment options. For ELSI researchers, this applied or translational research includes projects that develop specific policy recommendations or options that a wide variety of policy makers can use. The success of this research is determined by how well it translates ideas into applications. However, it is important to note that despite the fact that, although the ultimate goal of this research is the development of products, either biomedical or policy, neither the researchers nor NIH control the actual development of these products. As a result, while the development of public or professional policy is one gauge of the ultimate success of this research, it cannot be used as the sole measure for determining the success of individual research projects.

It also will be important to develop ways to assess the impact of ELSI research as whole, not just each individual type of research. Possible ELSI-wide evaluation approaches might include:

• Large, public surveys to determine the extent to which discourse on ELSI has made its way into public awareness.
   
• Targeted studies examining the impact of ELSI research findings on specific research, clinical or policy audiences (paying attention to the 'worldviews' of the various audiences and how they influence attitudes).
   
• Commissioning an historical study comparing the issues and problems that have arisen as a result of agricultural genetic research (which has never had a formal ELSI program) with those that have arisen in human genetic research.

Ensuring the Relevance and Accessibility of Bioethics and Humanities Research

After some discussion, the group suggested that the most important initial audiences for bioethics and humanities research are: 1) other ELSI scholars; 2) other humanities or social sciences scholars; and 3) genome scientists. These would be followed in importance by: 4) the general public; 5) policy makers; and 6) health care professionals.

Activities to reach these audiences could include:

• Development of research consortia like the ELSI cancer, cystic fibrosis and genetic variation research consortia for establishing linkages among ELSI researchers, so that they could keep abreast of each other's work, avoid duplication of effort, and, possibly, initiate some intra-project analysis.
   
• Organization of an annual conference devoted to ELSI research, which would be helpful in bringing the entire community together, not just those investigators focused on particular research issues.
   
• Holding small, intensive, week-long workshops or summer institutes devoted to particular topics or research questions that would bring together ELSI scholars, other humanities scholars and genome scientists, and promote interaction.
   
• Exploring the possibilities of establishing a journal devoted to ELSI research and of publishing an annual annotated ELSI bibliography available both in paper form and as an interactive and searchable Web site.
   
• Encouraging the development of multidisciplinary workshops among the faculty at individual universities to develop collaborative ELSI research projects. (It is essential to include scholars from disciplines that have not traditionally been represented in bioethics and humanities research, such as economics and political science, that will challenge the preconceptions of current research.)
   
• Development of brief (one- to six-month) fellowships for cross training of ELSI and genomics researchers.
   
• Establishment of an intensive genomics summer course for ELSI researchers.
   
• Institution of week-long summer 'camps' or workshops that would bring together ELSI and genomics researchers to get to know each other and each other's methods and approaches.
   
• Institution of a program supporting the rapid dissemination of ELSI research findings to the genomic research and health care communities.
   
• Development of a community engagement mechanism to strengthen interactions between ELSI researchers and various public and health professional communities. (This could take the form of small workshops focused on specific issues that would bring together ELSI researchers examining these issues and community leaders who would find the information generated by this research of greatest relevance.)

Emerging Issues, Research Priorities and Possible Research Questions

At the conclusion of the meeting, the group was asked to revisit the emerging issues summarized in the pre-meeting materials and discussed throughout the workshop and develop a more refined list of research priorities and possible research questions that the NHGRI should consider incorporating into the development of new initiatives for the ELSI research program. They were asked to think specifically in terms of emerging issues and research questions that would need to be addressed in the next few years. The following is a summary of these issues and questions:

• What is the meaning of genomics for familial, ethnic, racial and species/human identity? ELSI researchers will need the intellectual courage to undertake examinations of two serious and historically divisive issues: race and disability.
   
• What is a just foundation for commercializing genomic research? How can we study the question of what is a just way to think about property ownership of the body and the relationship of the body to its parts? How can we best understand descriptive, normative, and legal analyses of views across cultures and faith traditions on intellectual property and patenting issues?
   
• How do these and all the existing ELSI issues change when we seek to understand other cultures, faith traditions, or countries, particularly developing countries? How do we discuss these differences in a civil society with diverse intellectual and faith commitments? How does religion interact with health behaviors and decision-making?
   
• How do we move our research beyond the traditional critique of determinism that has been the basis for many ELSI studies over the years? How can we best study the inevitable and ongoing use of genetic information to legitimate social processes or policies? How can we understand changing ideas about moral agency and personal responsibility? How might advances in behavioral genetics be used to excuse people from personal responsibility, and how will we then understand narratives of sin, good, evil, redemption and agency?
   
• How can we study the emerging non-medical uses of genetics? How do we define what is "non-medical?" How does genome research affect how we view or define health and disease? Questions about the scope of parental decision- making in genetic testing will need to be explored, not only as legal issues, but as matters of philosophical and theological concern as well.
   
• How can we most meaningfully study questions of humanity and its limits? How can we understand the concept of nature as a normative state? What will genomics say for defining humanness and differentiating humanness from connections with other species?

The following methodological commitments should inform the practices of all ELSI researchers:

• The use of approaches that are comparative across cultures and time - both within the United States and internationally.
   
• The application of critical and constructive theological reflection and exploration of religious anthropologies, as well as more focused work within specific religious and cultural traditions.
   
• The design of studies that are attentive to issues of justice across cultures and nations.

The group concluded by reiterating that it is essential that the institute continue to support foundational research in bioethics and the humanities that addresses these and other so called 'world view' issues. They also emphasized the necessity of developing effective strategies for evaluating this research and ensuring that it is both accessible and meaningful to a wider audience.