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.
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".
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.
* 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:
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:
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:
The following methodological commitments should inform the practices of all ELSI researchers:
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.
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Last Reviewed: December 2005