GRANT # R13 HG00793-01A2FINAL PROGRESS REPORT IMPACT OF THE HGI ON SOCIETY: A WOMEN'S STUDIES APPROACH
Applicant Organization: The Ferre Institute, Inc. 258 Genesee Street, Suite 302 Utica, NY 13502 Principal Investigator: Helen Bequaert Holmes, Ph.D. Center for Genetics, Ethics and Women 24 Berkshire Terrace, Amherst, MA 01002 Co-principal Investigators: Luba Djurdjinovic, M.S. Genetic Counseling Program, Binghamton NY Mary Z. Pelias, Ph.D., J.D. Louisiana State University Medical Center Site A Ferre Institute, Utica NY Site B Center for Genetics, Ethics and Women Amherst Massachusetts Site C Muskingum Valley Conference Center Zanesville, Ohio Submitted by Helen Bequaert Holmes, Ph.D. December 16, 1996 GRANT # R13 HG00793-01A2FINAL PROGRESS REPORT IMPACT OF THE HGI ON SOCIETY: A WOMEN'S STUDIES APPROACH
TABLE OF CONTENTS
Final Progress Report 3 - 16 Executive Summary I. Workshop II. Preparatory Activities III. Outcomes (A) How the Project Met Its Goals Statement from African-American Women (B) Early Publications & Presentations (C) 2/95 Requests from ELSI Branch: Gaps in Knowledge; Research Needs Priorities Among Needed Research Policy Recommendations Acknowledgments For Appendices, see Evaluation Report Goals of Project Workshop Program List of ParticipantsEXECUTIVE SUMMARY IMPACT OF THE HGI ON SOCIETY: A WOMEN'S STUDIES APPROACH
The Workshop funded by grant HG00793 was entitled Women and Genetics in Contemporary Society (WAGICS) and took place May 16 through 19, 1996, in Zanesville, Ohio, with 57 active participants. They came from 15 academic disciplines and the professions of medicine, genetic counseling, nursing, public health, nutrition, pastoral counseling, journalism, and law; they brought input from 23 states and two Canadian provinces. Eight participants were active in genetic-condition support groups; fourteen were women of color. Although several participants clearly felt that genome research held great promise for women's well-being and were enthusiastic about the part they hoped to play in contemporary genetics, many others had qualms about the marketing, media attention, or assumptions behind current the clinical and research focus on human genetics. The group identified concerns of and implications for women in human genome research; it reframed old questions and uncovered new or neglected questions. Using nonhierarchical process, it sought and valued input from women who have been marginalized by race, ethnicity, and disability. The Principal Investigator then compiled a list of 23 research needs to fill gaps in knowledge about social and ethical issues, for example, needs for: more diversity in policy-making bodies, including people at risk; more diversity in the members of genetics professions; exploration of prochoice advocacy and disability rights advocacy; funding for workshops in which specific constituencies can clarify issues for themselves; resolving feminist issues in genetic counseling; and creation of a task force on behavior genetics. The participants reached consensus on two points: a. The Ethical, Legal, and Social Implications Branch of the Center on Human Genome Research should continue to give high priority to issues of genetic discrimination and genetic privacy. Genetic discrimination in employment and in health insurance should be forbidden; privacy of genetic information should be carefully protected; and no unexpressed genetic traits should be defined as "preexisting conditions." b. Establishment of universal access to health care should have a high priority as a means to prevent genetic discrimination. Some African-American participants prepared and read a report that emphasized (1) the need for women of color to identify the significant issues for themselves, (2) their provisos for how human genome research should proceed, and (3) their agreement on the necessity for immediate, priority funding to inform minority communities -- through their diverse organizations -- of the facts, the applications, the positive and negative aspects of human genome research, and its long- term implications. By mid-December 1996, three reports of the WAGICS Workshop had been published in newsletters and at least seven papers had been presented drawing on insights gained at the Workshop.IMPACT OF THE HGI ON SOCIETY: A WOMEN'S STUDIES APPROACH
I. Workshop The Workshop funded by this grant, entitled Women and Genetics in Contemporary Society (WAGICS), took place May 16 through 19, 1996, at the Muskingum Valley Conference Center in Zanesville, Ohio. Present were 57 funded participants [including 3 Principal Investigators (PIs), the Site Coordinator, 2 Program Committee Members, and 2 Evaluators] and 13 others [5 personal care attendants, 3 (unfunded) student assistants, and 2 support staff, and 3 other attenders]. See Appendix D for a list. Participants came from 15 academic disciplines and the professions of medicine, genetic counseling, nursing, public health, nutrition, pastoral counseling, journalism, and law; they brought input from 23 states and two Canadian provinces. Eight participants were active in genetic-condition support groups; fourteen were women of color. The program comprised nine plenary sessions, with the topics and participants essentially as presented in Appendix C. II. Preparatory Activities A. Planning meeting. Program Committee members, PIs, site coordinator, and support staff met at the Procter Conference Center, London, Ohio, in December 1995. That group made the final selection of topics, topic order, time slots, and coordinators for each session; they assigned participants to appropriate working groups. Requirements for site suitability were discussed, including an evaluation tour of the Center with a disability consultant. B. Accommodations/Meals/Travel. The planning group determined that the Procter Center was unsuitable because it failed to meet disability access requirements. On a visit in January 1996, the PI and the site coordinator found that the Muskingum Valley Conference Center met most of the Workshop's requirements. In the early spring of 1996, participants completed forms on travel arrangements, accommodation needs, and food requirements. C. Preliminary Work on Resource Network List, Project Goal #4. In October 1995, the staff at Site B compiled a Directory of Participants, which listed contact information for all participants and gave a brief biographical sketch of their education, experience, areas of expertise, and accomplishments. A supplement was issued in January 1996, and a revised, inclusive Directory was distributed at the Workshop. D. Books. As described on page 57 of the 11/93 submission of the proposal, one book was provided for each participant, selected by the participant from the list below. The first three were listed on page 57; the final two are books that are appropriate to our goals and have appeared since 11/93: K. Rothenberg & E. Thomson, eds.: Women & Prenatal Testing S. Sherwin: No Longer Patient Kevles & L. Hood, eds.: The Code of Codes H. Rose: Love, Power and Knowledge: Towards a Feminist Transformation R. Hubbard: Profitable Promises: Essays on Women, Science and Health Each participant was asked to select a book in November 1995; books, each with a list of the most pertinent passages, were mailed to participants in January 1996. E. Additional Readings. During the winter of 1996, professional papers, magazine articles, book chapters, and a few unpublished papers were compiled into two Books of Readings, of 214 and 194 pages respectively, and a last-minute supplement of 27 pages. The PI selected these papers from the lists on p. 57 and in Appendix B of the 11/93 proposal, and from suggestions of more recent articles by the coPIs and session coordinators. The PIs welcomed suggestions from all participants and tried to include at least one appropriate article written by each participant. F. Loss of Participants Due to Underfunding. When the project was funded at only 12% of its requested budget, all people who had submitted letters of commitment were contacted in writing. Each was told that the consulting fee amount proposed to them originally could not be paid. Fifteen of the original group dropped out; of these, twelve had roles involving some national policy-making, for example, membership on the ELSI Task Force on Genetic Testing or the ELSI Working Group, frequent participation on proposal review panels, or positions at the National Center for Human Genome Research. Some dropped out immediately after receipt of the PI's letter; others withdrew during fall 1995; and a few left shortly before the Workshop. Unfortunately, in addition to the loss of people with needed skills in policy-making, the project also lost some of its original diversity in race, ethnicity, and disability. Furthermore, the original Process Consultant, who was an expert in organizational development, and the three original Evaluators, who two years before had agreed to accept less than their usual consulting fees, withdrew after learning about the much lower compensation. Loss of the expert on organizational development had a detrimental effect on process management before and during the Workshop; the evaluators, fortunately, were replaced with a competent and conscientious team. III. Outcomes: (A) How the Project Met Its Goals See Appendix B for the complete text of the goals. Details of how the participants and the evaluators judged that these goals were met are found in Appendix A and are not repeated here. Below is the PI's analysis: Goal #1 Finding concerns of, and implications for, women. This was indeed heavily emphasized throughout the Workshop. The concerns raised by the women present led to identification of numerous research needs and gaps in information as detailed in Section III (C) below. See especially items c, d, e, f, j, n, and u. Goal #2 Reframing questions, finding new or neglected questions. The Workshop presentations and discussions identified several new or neglected questions and found others receiving too little attention; these and some reframed questions comprise most of the list in Section III (C) below. Goal #3 Seeking and valuing input from women who have been marginalized. Many participants explicitly noted the benefit they received from the contributions of those in the diverse racial, ethnic, and disability groups present. Input from these participants was sought and highly valued. Despite the loss of some diversity due to underfunding, the project met this goal reasonably well in the areas of race, ethnicity, and disability. We also valued the input of, and considered the new questions raised by, those with differing sexual preferences, a category not in the grant proposal. However, we had insufficient diversity in age and class, with too few working-class and young people. On 18 May, a group of African-American women participants met separately from the Workshop sessions to discuss the Human Genome Initiative (HGI) and related genetics topics. In plenary session on 19 May they presented a thoughtful document with their major conclusions. Below is a minimally revised version of this statement:DISCUSSION GROUP REPORT FROM AFRICAN-AMERICAN WOMEN
1. Women of color can and should meet with their respective groups to - be sure that significant issues for the group are identified; - share feelings, experiences, viewpoints; - develop a collective vision based on knowledge and respect for differences; 2. There are diverse opinions with respect to the HGI, not unanimous support. However, in view of the fact that it is a reality, and that we must be prepared to deal with it effectively, we recommend that it proceed only with the following provisions: - there must be equal access to quality health care for all; - all groups should have equal access to genetic information and associated technologies; - there must be significant minority participation in all decision-making, monitoring and control of all aspects of human genetic research, and consumption of genetic technology; - in particular, active input on federal and other committees must be contributed from all segments of society; - general societal concerns which have impact on everyone must be addressed, with the special emphasis that society's most vulnerable individuals are the ones at greatest risk, e.g., in issues related to insurance, privacy, and employment discrimination. 3. A major, immediate task is to inform minority communities - through their diverse organizations - of the facts, the applications, the positive and negative aspects of human genome research, and its long-term implications - through churches, fraternities, sororities; - through all media (written and electronic); - through our legislative and other political bodies; - through established community-based organizations; - through CORN and other health programs with community- based outreach. Women of color concerned about human genetic issues should, for example, become active participants in relevant conferences, such as the one scheduled at Tuskegee University in September. Goal #4 Facilitating networking. (the emphasized goal) Since every participant had a place on the program, all present were able to identify people who would be useful in collaborative projects. Between sessions, several participants made general or specific plans to work together. The PI expects to tabulate two years from now the collaborations actually carried out, and to submit that report to the ELSI Branch. A "WAGICS Resource Network List" (WRNL) is being constructed from the Directory of Participants. The WRNL will be announced on the Ferre Institute Web Site: http://members.aol.com/ferre.html. As proposed on page 8 of the 2/95 scaled-down revision of HG00793, this WRNL will contain names, contact data, and areas of expertise of women who can be available to persons organizing symposia, conferences, research projects, and oversight committees on ELSI issues, with the purpose of diversifying such analyses and the persons selected. When it is essentially complete, announcements of the existence of the WRNL will be made in appropriate journals, including, for example, Human Genome News, GeneWATCH, American Journal of Human Genetics, Journal of Genetic Counseling. Goal #5 Using collaborative methodology, participatory democracy. In part because of the absence of the expert on organizational development, this goal was not adequately realized. The staff structured a format that we believed would lead to productive interchange; it was indeed egalitarian and nonhierarchical, but did not allow for tensions from ideologies and perspectives to result in active recommendation development. See further analysis in Appendix A. Goals #6 and 7 were not funded. Some comments on goal 6 are in Appendix A. A reworded Goal 7 is reported in III. Outcomes: (C) below. III. Outcomes: (B) Voluntary Publications and Presentations, as listed on p. 8 of 2/95 scaled-down revision of HG00793. News Reports and Publications. As of mid-December 1996, the following have been published: "'Feminist Fashion' in Genetics: The WAGICS Workshop in Zanesville," by Mary Mahowald. Newsletter of the Network on Feminist Approaches to Bioethics 4(1):3 (July 1996). "Ethics and Genetics," by Altheada Johnson. VHL Family Forum 4(3):10 (September 1996). "WAGICS Conference, Zanesville, OH," by Altheada Johnson. Genesis VII(3):3-4 (Fall, 1996). The following articles/reports have been accepted for publication: "Women and Genetics in Contemporary Society (WAGICS) Workshop," by Regina Kenen. National Women's Health Network News (forthcoming). Panels, Symposia, Presented Papers. As of mid-December 1996, the following papers have been presented: "Women's Studies and Biology, Biotechnics, and Reproductive Technology Research." Paper presented by Sue Rosser at Linkoping University, Sweden, 2 October 1996. "Barriers to Consensus in Regulating Genetic Testing." Paper presented by Anne Donchin at the Conference on Consensus in Bioethics, Centre for Professional Ethics, University of Central Lancashire, UK, 19 October 1996. "Ethical Issues in the Human Genome Project." Lecture by Becky Althaus, for ethics class, Ph.D. in Nursing Program, Texas Women's University, Denton, 7 November 1996. "Genetics Services for Women of Color." Paper presented by Laurie Nsiah-Jefferson, Symposium on Communities of Color and Genetics, Seton Hall Law School, Newark NJ, 8 November 1996. "The Politics of the Human Genome Project: Gender Rights and Reproductive Policy." Paper by Laura Woliver, at the Southern Political Science Convention, Atlanta GA, 9 November 1996. "Ethical Issues in Human Genetics." Lecture by Francine Essien, Robert Wood Johnson Medical School, Piscataway NJ, 18 November 1996. "Feminism, Disability, and Gender." Panel organized by Mary Mahowald for the international conference, Feminist Approaches to Bioethics, San Francisco, 25 November 1996. The following panel has been scheduled: "Reproductive Politics and the Human Genome Project: Expansions and Constrictions on Choices and Rights." Panel organized by Laura Woliver for the American Political Science Association annual meeting, Washington DC, early September, 1997. III. Outcomes: (C) Four requests from the ELSI Branch as outlined in a 2/17/95 letter from the PI to the Branch. The Workshop was requested to identify: 1. gaps in knowledge about social and ethical issues, especially those for which information on 'impact on women' or 'input from women' is needed; 2. research needs in ELSI areas; 3. priorities among this needed research; and 4. policy recommendations for the Ethical, Legal and Social Implications Branch.1. GAPS IN KNOWLEDGE and 2. RESEARCH NEEDS
1 and 2 are combined here because the "gaps in knowledge" are essentially the same as the "research needs." The identified gaps and needs are assembled in two groups: i. From Notes and Tapes; and ii. PI's Interpretations. i. From Notes and Tapes Items a through r were developed from statements posted on newsprint pads during some sessions, notes that participants submitted after a request for "next steps," and tapes of the sessions. Except for a and b, they were not discussed in plenary session specifically as submissions to ELSI and thus cannot be considered to be group recommendations. For most items below, many (but certainly not all) participants would concur that these are indeed "gaps in knowledge" or "research needs." A few points in this list are individual concerns. a. ELSI should continue to give high priority to the issues of genetic privacy and genetic discrimination; the "gaps" and "needs" are that membership of groups working on these issues should include more individuals at risk and more members of groups that have historically been targets of discrimination. b. ELSI should fund grants that include any aspects of the development of universal access to health care, because provision of truly universal health care is fundamental to the prevention of genetic discrimination; the "gap" is that the issue of universal access to health care appears to have been ignored the ELSI program. c. ELSI should fund more interactive workshops for the purpose of focused give-and-take discussions within specific constituencies. Such workshops might comprise constituencies who have documented reasons for being suspicious of medical and governmental programs established allegedly to improve their lot, such as people with disabilities and members of minorities. Ideally any such workshop would include several persons from any given constituency in an attempt to provide a gamut of views on the potential impact of human genome research. Some participants from groups likely to be affected by the results of human genome research felt a need for discussion on the issues, via conferences, workshops, committees, various forms of networking, etc. Various groups of individuals who are united by common links would meet to discuss their differing views on the issues arising from human genetics research. Such discussion may identify unified positions and may produce a stronger and more clearly defined input on policies likely to affect marginalized groups more profoundly than the rest of society. Clear conclusions are likely to make subsequent intergroup discussions more focused and productive. Other interactive workshops might well be comprised of members of various professions directly involved in human genome research or in analyses of the issues raised (for example, social scientists, genome scientists, philosophers, lawyers, or medical sociologists). When people from groups referred to above presented their own views at the Workshop, their specific concerns were not always shared by all members of their group; therefore, some participants felt it would be more productive to air and delineate different views on specific issues first in less guarded conversations within smaller groups that share some defined connections. In other words, a certain amount of exclusivity at first might be necessary for productive discussion and for outcomes that will benefit the rest of society as well as the defined group. However, groups that meet separately should interact afterwards with each other. An open question is how much separate discussion will be valuable, and what will be the most productive ways for such groups to interact with other groups. Nonetheless, interaction between different interest groups and constituencies is vital in formulating fair and informed public policy. In sum, the research need is for specific constituencies to discuss implications of human genome research internally and then to interact with other constituencies. d. In education of the general public about the Human Genome Project there is a need to include implications for human relationships and implications for women of various races, ethnic backgrounds, education levels, and socioeconomic status. e. There is a gap in others' comprehension of the stance held by feminists within the disability community who are prochoice on abortion yet simultaneously disability rights activists. Also, prochoice advocates need to confront the disability issue. The need is to clarify this tension, first within disability advocacy communities themselves, then between those communities and professionals who work in genetics or work in the analysis of ELSI issues, and also with prochoice advocates. Funding should be provided for workshops, committees, and research groups to work on this tension and to create products, such as written documents directed at specific constituencies, to clarify these views. f. There is a gap in understanding the processes of genetic counseling, particularly by some feminist academics and disability rights activists. Funding needs to be provided for projects such as those below, each suggested by one or several participants. Before any such collaboration, a planning team of counselors and noncounselors should examine explicit concerns of counselors and noncounselors to determine an agenda of issues that can be productively discussed. - further study of the feminist principles already within genetic counseling practice, possibly via a collaborative project to develop a model of feminist genetic practice; - exploration with disability communities of such issues as what types of information to present, composition of appropriate texts for brochures, the value of home visits, and interactions of counselors-in-training with people with disabilities; - dialogues with minority communities on how to provide fair and helpful access to genetic counseling without exposing vulnerable, underserved populations to discrimination. g. There is a gap, paradoxically, between the extensive media attention on genetic discoveries along with the marketing of genetic tests on the one hand and the deficiency of third- party reimbursement and federal funding for genetic services on the other. This gap may grow if genetic counselors and clinical geneticists are eliminated by Health Maintenance Organizations in cost-saving moves. h. There is a need for more people of color in the field of genetics. Active recruiting is necessary, along with support for adequate salaries and job security. Funding is needed to provide more mentors for people of color in genetics and more emphasis on genetics in all phases of education. Recruiters should realize that minority communities may suspect eugenic motivations in established medicine. i. There is a need for a task force on minority concerns in human genome research, to follow the agenda set forth in the "Statement from African-American Women" (under goal #3, item 3, pages 6-7). This task force should be granted significant power of input into policy decisions on HGI implementation. j. There is a need for significant, not merely token, representation of women, of people with disabilities, and of multiple ethnic groups on the human genome committees that control outcomes of technology use. The views of these representatives should have substantial impact on directions taken. k. There is a need for people with disabilities and of color to be included in the planning and implementation of programs and research focusing on genetics of common adult disorders. l. In acting on the needs identified in h through k above, there should be a forceful search for people of color in policy-making positions. Further, emphasis should be put on including underrepresented people of color, e.g., Native Americans. m. Some participants identified a need for training programs (MS, MD, & PhD) in genetics to provide greater sensitization and exposure to the diverse cultures to be served. This should include recognition that some minority communities associate "genetics" with eugenic attempts at genocide. See also item f. n. When a gene is associated with a particular community, there is a need for that community to have a major part in determining policy on research emphases, application of research, and marketing. The use of the perspectives of the community of breast cancer survivors and families in developing many current screening protocols for BRCA1 is an excellent contemporary example. o. There is a need for a Task Force on Behavior Genetics because of the considerable media coverage and popular interest in connecting biology with behavior and because of the challenges in defining specific behaviors and in designing creditable experiments. Researchers deeply involved may not be able to step back and do such assessment. See item w below for one suggested assignment for this task force. p. There is a need for research on environmentally prevalent chemicals that may function as regulators of disease-related genes. There is a gap in concern about racial groups who may be concentrated in the most polluted and dangerous work. q. There is a need for research geneticists and genome scientists to self-reflect about the development of technology from their research; about the values that have molded their science; and about how science molds social values. r. There is a need to study ways to prevent the reduction of health strategies to merely genetics and to encourage the public and researchers to give higher priority to other health measures, especially social. (ii) PI's Interpretations The Workshop discussions revealed that some participants clearly believe that genome research has important potential for women's well-being and were enthusiastic about the part they hope to play in contemporary genetics. They see great promise in the outcomes of this research for their own or their clients' families. Yet many participants, generally in the humanities or social sciences, or former scientists, believe that society may pay too high a price for this promise. They are anxious and disturbed about the Human Genome Initiative: about the energy and enthusiasm directed toward this particular area of science and about some pending applications of such research. And some others felt silenced in order not to be pushed into one or the other stance. The difficulty in harmonizing these positions (promise vs. anxiety) is illustrated by the two areas of agreement (a and b), which show the only ground common to both these viewpoints. The areas of agreement among African-American women, although more extensive, also illustrate side-stepping of this tension. The PI has developed items s through w below from her personal notes, tapes of the sessions, and reflections after the Workshop. Some of these evolved from her perception of underlying issues and significant matters that, in her opinion, received too little attention. Most of them are recommendations of ways in which the dichotomy described above and the tensions resulting from it might be handled productively. Many illustrate her hypothesis that dividing the tension into smaller pieces may help to resolve it. s. There is a need for people with disabilities to enter a dialogue within their communities to clarify the implications of human genome research for themselves. Such dialogue should involve people with a wide range of disabilities. This range should include disabilities caused by in utero infections or by trauma at birth or by childhood or adult accidents, as well as by genetics. Among genetic conditions, included should be some of variable penetrance, with various ages of onset, with clear involvement of a single exon, and those for which family members and caretakers are at risk or are not at risk. Most important, this dialogue must involve those who have reason to be extremely wary of genetic research, those who welcome it and have had their lives improved by it, and those who are concerned about both pitfalls and promises in research targeted at their own condition. The purpose of such interchange will be to prepare comprehensive yet nuanced guidelines to recommend priorities in research and in developing screening tests and attempts at gene therapy. Perhaps some particular lines of basic research or particular applications should be discontinued while others are given funding precedence. t. Critics of the Human Genome Project from the social sciences and the humanities have a gap in knowledge of exactly what basic genome research and applications of that research are being carried out on site at the National Center for Human Genome Research, in laboratories funded by grants from the NCHGR, in private clinics, and in biotechnology firms. There is a need for repeated short courses or intensive workshops to update this information, in presentations geared to this particular audience, not in programs geared to the general public. u. There is a gap in recognition of the grief experienced by women who have experienced a "therapeutic" abortion. They get little empathy from friends, family, and even husbands, because they are expected to be grateful at not having a baby with a disability. One research need is to assess the few programs that support such women in order to provide recommendations for implementing other support programs; another need is to disseminate such information widely via appropriate professional journals; a third research need is to compare the suffering after such abortions with that after the death of a child with a condition fatal in babyhood, with the goal of developing a fine-tuned, woman- affirming policy toward therapeutic abortions. v. There is a gap in information about how much families of, and persons with, socially unacceptable behavior traits might welcome clear evidence that such traits are under the control of genes. Workshop participants held a variety of views on this issue. A research need is for such people to enter in dialogue with each other, with people with other behavior traits currently being targeted in research, and with professionals who work with people with such behaviors, with goals of value clarification leading to recommendations for priorities in research, assessment of such research, and applications. w. There is a need for an appropriately designed ethics and oversight committee for any search for a behavior gene. A research need is to determine an effective and useful composition for such committees. For example, should such committees be comprised mainly of family members of, and persons with, the trait under study? Should they include persons who hold differing views about the advisability and usefulness of such research, at least one statistician with no vested interest in the outcome, and unaffected members of any ethnic group in which such a trait is common? Such committees might be set up by the Task Force on Behavior Genetics (in o above). The charge to and duties of such committees should be studied. Should they prepare a clear definition of the trait under study; monitor the experimental design and the statistics used in determining the locus of any putative gene; and oversee how results are presented in both the scientific and popular press? Would their most important responsibility be assessing whether results from such research will benefit society in general and persons with the trait? Should this committee have some authority over the publications of and the funding of the project?3. PRIORITIES AMONG THIS NEEDED RESEARCH
The Workshop reached general agreement to give priority to only the two matters repeated below, derived from items a and b above. African-American women also reached agreement on an additional matter of priority. a. ELSI should continue to give high priority to the issues of genetic privacy and genetic discrimination in health insurance and employment. The PI notes that currently much media attention is directed to crisis situations in which persons with genetic conditions in their families fear the loss of insurance coverage or jobs if they get tested. The participants endorsed the following stands: genetic discrimination in health insurance or employment should be forbidden; privacy of genetic and other medical information should be protected; and no unexpressed genetic traits should be defined as "pre-existing conditions." b. Establishment of universal access to health care should have a high priority. The PI notes that this endorsement illustrates one facet of feminist analysis, namely, the concern that the profession of bioethics and the media become interested in issues only after they reach the crisis level. Professionals and a society with a true concern for ethics and social justice should structure a health care system that would preclude the occurrence of such crises -- a 'housekeeping' approach rather than a 'crisis' approach. Often during the Workshop, some participants pointed out that one or another particular troubling issue would not exist if universal guaranteed health care were already in place. Universal health care cannot remain outside the purview of the National Center for Human Genome Research: it is a vital component of a human genome research program if adverse ethical and social outcomes are to be prevented. In addition to concerns about the lack of universal health insurance, a few participants extended their concern to contemporary economic and social systems that may prevent establishing guaranteed health care. These participants felt that, as long as groups in society aim to maximize profits from drugs, devices, procedures, and private clinics, universal health care will be difficult to attain. PRIORITY OF AFRICAN-AMERICAN WOMEN Funding should be provided, immediately and with priority, to inform minority communities - through their diverse organizations - of the facts, the applications, the positive and negative aspects of human genome research, and its long- term implications. (See pp. 6-7 for more details.)4. POLICY RECOMMENDATIONS FOR THE ELSI BRANCH
i. General agreement of the entire group applies only to items a and b above. ii. This recommendation is a composite of suggestions by several participants: ELSI should fund Workshops to follow up this one, every two years, with adequate and ongoing support, and especially support for publication. Planning committees should be formed from the present participants; the agenda should be focused on selected topics among those identified in this Workshop; some time should be devoted to educating one another; more attention should be given to process, possibly through National Coalition Building Institute techniques; and blocks of time should be allotted to small-group discussions. Funding should include support for networking between Workshops and for distribution of recommendations, presentation outlines, bibliographies, and sources of good information. iii. From the lists under gaps and needs, identified here by those letters, financial support from the ELSI Branch is needed for c. workshops for specific constituencies (pp. 9-10) d. educational projects that include implications for women (p. 10) e. workshops on the tension between disability rights and pro-choice views on abortion (p. 10) f. workshops on feminist issues in genetic counseling (pp. 10-11) i. establishing a task force on minority concerns (pp. 6-7 & p. 11) o. establishing a task force on behavior genetics (p. 12) q. research on values among scientists (p. 12) r. research on reduction of health strategies to genetics (p. 12) s. specially structured dialogues within the disability community (p. 12-13) t. informational courses for critics of the Human Genome Project (p. 13) v. workshops on values and policy with families whose members have socially unacceptable behavior traits (pp. 13-14) iv. From the lists under gaps and needs, the ELSI Branch should make recommendations to appropriate funding sources to provide financial support for h. recruitment of people of color into genetics (p. 11) p. research on environmental chemicals that may regulate genes (p. 12) w. research on grief after fetal loss (p. 13) w. a special appropriately designed ethics/oversight committee for each behavior genetics research project (pp. 13-14) v. More diversity is needed on existing and future policy- making committees and task forces in ELSI areas j. more than token representation of women, people with disabilities, and people of color (p. 11) k. more than token representation in planning and implementing research on genetics of common adult disorders (p. 11) n. inclusion in policy-making of the community and ethnic groups associated with a particular gene (pp. 11- 12)ACKNOWLEDGEMENTS The PI thanks Francis Holmes for his constant support, in time, energy, encouragement, and funds throughout the development and implementation of this project. It could not otherwise have taken place. She is also deeply indebted to Derwent Suthers, Executive Director, and Loraine Simkus, Accountant, at the Ferre Institute for their willingness to administer a grant that did not provide overhead expenses. Their strong and unflagging support was essential. She is especially thankful for the devotion and toil of the Site B office staff, Flora Josephs, Administrative Assistant, and Margrette Twardowski, Office Assistant, in tedious preparatory activities and for their phenomenal and indefatigable good spirits and hard work at the Conference Center. She also thanks her professional organizing staff -- the coPIs, Program Committee members, the Site Coordinator, and the Evaluators -- for their efforts and encouragement throughout the project. She is grateful for the helpful advice of members of the organizing staff on earlier versions of this report. Their suggestions have improved the final product. However, any flaws, errors, omissions, and misinterpretations remain the responsibility of the PI.
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