Ethical, Legal, and Social Issues Abstracts
DOE Human Genome Program
127. Electronic Scholarly Publishing: Foundations of Classical Genetics
Robert J. Robbins
Fred Hutchinson Cancer Research Center, Seattle, WA 98109
The HGP has significant ethical, legal, and social implications for all citizens. Public interest in the project is growing. In addition to its importance in the training of professional geneticists, the HGP is of special relevance for undergraduate training in basic biology, and even for high-school and other K-12 education. In a world soon to experience a flood of information and technology from genomic research, a basic understanding of genetic principles may become part of the expected knowledge base of the educated citizen.
Understanding HGP research, however, requires some familiarity with basic genetics. Access to materials that support an understanding of classical genetics can be difficult for those outside a university environment. We have created an informational and educational resource at which material related to the foundations of classical genetics is being republished in readily available, typeset-quality electronic form. We also publish additional material, such as pedagogical materials, items of general interest, biographical and autobiographical memoirs, and historical or analytical treatments.
Materials at our site are of interest to individual users, but they are especially valuable for teachers and other educators in the preparation of their course materials. Several textbook publishers are providing links to our site at their value-adding textbook support sites. Many junior college and secondary school sites are also now referencing our site.
In the past year, we have emphasized software development to improve the efficiency with which we can publish works at our site and to improve the functionality of our site for users. We have also gained access to some critical copyrighted materials by establishing relationships with key publishers, such as the Genetics Society of America and the Cold Spring Harbor Laboratory Press.
128. Genes, Environment, and Human Behavior: A Curriculum Module
Mark V. Bloom1, Rodger W. Bybee1, Michael J. Dougherty2, and Joseph D. McInerney3
1Biological Sciences Curriculum Study (BSCS), Colorado Springs, CO 80918-3842; 2Hampden-Sydney College, Hampden-Sydney, VA 23943; and 3Foundation for Genetic Education and Counseling, Johns Hopkins University School of Medicine, Baltimore, MD
Genes, Environment, and Human Behavior is a curriculum module designed for high school biology classes. It specifically addresses the roles of nature and nurture in human behavior. Developed by BSCS, a nonprofit curriculum development group, the module uses an inquiry-based approach that also provides well-structured and civil classroom analyses of ELSI-related issues. The curriculum is the fourth genome module produced by BSCS and is provided to teachers at no cost.
Students using the module should be familiar with Mendelian genetics, the chromosome theory of inheritance (including genetic linkage and recombination), the chemical nature of the gene (including the structure of DNA), and the central dogma, which states that genetic information resides in DNA, passes through an RNA intermediate, and is ultimately expressed as protein.
Designed for five periods of classroom instruction, the module consists of five student activities and includes extensive teacher background material. The student activities are organized into a conceptual whole that introduces students to the meaning of human behavior, to types of variation in populations, to the study of behavioral genetics, and then to the methodology for isolating genes that influence behavior. The first activity involves distinguishing between simple Mendelian traits and polygenic traits. The second activity builds on the first, and helps students understand multifactorial traits, The third activity introduces the use of twin studies in behavioral genetics, while the fourth activity demonstrates the use of association studies in the quest to locate genes influencing behavior. The concluding activity is a role-playing exercise that lets students use what they have learned to assess the wisdom of using genetic knowledge to formulate social policy.
129. High School Students as Partners in Sequencing the Human Genome
Kristi Sanford, Maureen Munn, and Leroy Hood
Department of Molecular Biotechnology, University of Washington, Seattle, WA 98195-2145
Through the generous support of the Department of Energy since March 1994, we have developed a unique program that encourages high school students to think constructively about the scientific and ethical issues of genomic research by enabling them to participate in both. High school biology teachers from around Washington State and throughout the USA attend a one-week summer institute at the University of Washington to learn about the process and applications of DNA sequencing. Throughout the school year, local teachers are provided with the equipment and supplies necessary to carry out the sequencing experiment. Distant teachers are provided with DNA templates and primers, but they need to obtain the equipment and supplies independently.
Students are currently using manual or automated approaches to sequence the b2 subunit of the nicotinic acetylcholine receptor, as part of an authentic research project focused on understanding the genetic basis of nicotine addiction. Some of the activities, such as a DNA assembly and BLAST search, are accessed through the project web site. Students also learn to apply an ethical decision making process to resolve a complex topic based on presymptomatic genetic testing. Through discussions with scientist mentors who assist during classroom experiments, students learn about many career options in science. The program is used in general and advanced biology, as well as vocational biotechnology classrooms.
We have trained 74 teachers through one-week summer institutes and 160 teachers through one-day workshops. Since 1993, a total of 8400 students have participated in the DNA sequencing experiment as part of this program. We have found that teachers are much more likely to integrate this program into their classroom activities if they are eligible to borrow the HSHGP equipment kits. For this reason, we will channel our dissemination efforts through partnerships with several outreach programs throughout the nation.
This work is sponsored by the US Department of Energy under grant No. DE-FG03-98ER62547/AM01.
130. The Science and Issues of Human DNA Polymorphisms: An ELSI Training Program for High School Biology Teachers
David Micklos, Matt Christensen, and Scott Bronson
DNA Learning Center, Cold Spring Harbor Laboratory, Cold Spring Harbor, NY 11724
We have implemented a nationwide training program to introduce high school biology teachers to the key uses and societal implications of human DNA polymorphisms. The 2.5-day program targets an audience of highly professional faculty who have already implemented hands-on labs in molecular genetics, many of whom offer laboratory electives in biotechnology. The 10 workshops conducted to date have involved a total of 231 high school faculty at workshops held in eight states -- 15% over the projected registration of 200 participants.
Program participants learn simplified lab techniques for amplifying two types of chromosomal polymorphisms: an Alu insertion and a VNTR. These polymorphisms illustrate the use of DNA variations in disease diagnosis, forensic biology, and identity testing -- and provide a starting point for discussing the uses and potential abuses of genetic technology. Participants submit their Alu insertion data to the Student Allele Database at the DNALC's WWW site. This elegant and easy-to-use interface allows students to test Hardy-Weinberg equilibrium, compare world populations, and test theories of human evolution.
We have also introduced a Sequencing Service to generate control region sequence from mt DNA samples submitted from biology classes around the country. Workshop participants amplified the mt control region from DNA prepared from their hair roots or cheek cells, and the amplicons were returned to Cold Spring Harbor Laboratory for cycle sequencing. The completed sequences were then posted at the DNA Sequence Server, a powerful database application that allows students to analyze their own mt DNA sequences -- including similarity searches and multiple sequence alignments. We have replicated the process with student mt samples submitted by mail, and our database currently contains 850 teacher and student mt sequences, which can be reached at the DNA Sequence Server site.
131. Using the Power of Informal Learning to Address Science Literacy: A Report from the Microbial Literacy Collaborative
Cynthia A. Needham
American Society for Microbiology, Washington, D.C. and ICAN Productions, Ltd., Stowe, VT 05672
The Microbial Literacy Collaborative (MLC), a partnership of organizations committed to advancing scientific literacy, opened the door to the microbial world for millions of people over this past year.
"Intimate Strangers: Unseen Life on Earth," the four hour science documentary that provided the centerpiece for the initiative, was broadcast simultaneously by over 90% of the stations within the PBS system during November 1999. The series was viewed by an average of 1.6 million households each week and received favorable reviews from both trade and scientific press.
"Meet the Microbes," a collection of 17 hands-on activities that complements the major themes of the television series were used widely throughout the US. The activities are appropriate for both informal and formal learning environments. They support open-ended experimental design, help to address elements of National Science Education Standards, and can be downloaded from the MLC website.
Two National Youth Leadership Summits, week-long experiences designed to introduce youth leaders and their adult sponsors to the microbial world and prepare them to implement the hands-on activities in their local community programs, were held. Participants for each summit were drawn from science museums, youth clubs, and school science clubs from 12 different regions in the U.S. A third summit is planned for summer 2000 in Portland, Oregon.
"Unseen Life on Earth: An Introduction to Microbiology," a 12 part video series designed for use in both undergraduate and pre-college classrooms as well as for distance learning, was received with great enthusiasm by the teaching community. Each 30 minute film focuses on a different aspect of the microbial world. The video series addresses the curriculum standards endorsed by the ASM and is accompanied by teacher and student guides.
"Intimate Strangers: Unseen Life on Earth," the companion book to the documentary, combines vivid, descriptive images from the television series with original artwork to tell the compelling story of the world of microbes and their role in the Earth's ecosystems. Targeted to members of the scientifically interested public, the book puts the vitally important role of the microbial world into stories and terms familiar to the reader. The book is available through ASM Press.
www.microbeworld.org is the MLC's award winning website. The site contains information about the microbial world for all, educational resources for teachers and students, and links to other sites with microbial information. www.microbeworld.org was chosen as an USA Today Hot Site and was featured in NetScape's What's Cool. The site received an A-plus review from Education World and was picked and the Top Site Award from Education Planet.
132. Hispanic Role Model and Science Education Outreach Project - Human Genome Project Education and Outreach Component
Institute Of Genetics Education (IGE), Self Reliance Foundation (SRF) and the Hispanic Radio Network (HRN), Santa Fe, NM 87505
This year completes the DOE sponsored project. The project continued to write, produce and broadcast radio programs, in Spanish, about the scientific, medical, and ELSI consequences of the HGP.
The project more than doubled the number of radio programs to 50 shows this year. These programs were divided among three popular radio shows:
Topics covered in the episodes focus on:
In addition, this year the project added two new dimensions to the project.
The project produced three shows for the acclaimed radio talk show "Mundo 2000." These were one hour long shows featuring Spanish-speaking experts in genetics or related fields discussing the issues. "Mundo 2000" is currently carried by 17 affiliates and reaches an estimated 20.9% of the US Hispanic population. However, it is also broadcast throughout Latin America, with a additional estimated audience of 15.3 million.
2."La Columna Vertebral"
The project began providing information via the syndicated newspaper column, "La Columna Vertebral." "La Columna Vertibral" is syndicated in 82 Spanish language newspapers, with a combined circulation of about 2.5 million readers.
133. Seeking Truth, Finding Justice: A PBS Documentary Special
Backbone Media, San Francisco, CA 94131
TRUTH & JUSTICE will be a documentary special for national broadcast on PBS. Produced by the nonprofit corporation Backbone Media in association with Oregon Public Broadcasting, TRUTH & JUSTICE will stimulate the public to think critically about the real strengths and important limits of science -- particularly genetic science -- in both framing and resolving social conflict. It will demonstrate how new technologies -- particularly genetic technologies -- create unexpected, unprecedented legal conflicts which challenge fundamental legal, ethical and social principles.
In the style of A Question of Genes, the PI's award-winning, DOE-funded PBS program, each hour will closely observe two or three pairs of people -- judges and scientists, lay people and lawyers -- as they grapple with science and technology in a handful of actual legal cases. Through the interactions of these central "characters," the program will explore the critical interplay of science and the courts in deciding conflicts raised by genetic, reproductive and life-creating technologies. By profiling people at the center of these conflicts, it will use compelling, accessible human drama as its vehicle.
134. SoundVision Science Literacy Project
Barinetta Scott and Jude Thilman
SoundVision Productions; 2991 Shattuck Ave.,
Ste. 304; Berkeley, CA 94705; 510/486-1185, Fax: 510/486-1287
SoundVision Productions held its first week-long intensive science literacy training workshop for public radio reporters and producers. The pilot workshop was held at KQED in San Francisco in October, 1999. Ten reporters/producers came from around the country to attend 15 sessions led by scientists from fields ranging from genetics to physics and statistics, as well as exceptionally creative radio producers. The training built on its award-winning public radio documentary series, The DNA Files, which consisted of nine one-hour documentaries broadcast in late 1998 and early 1999. As a result, much of the session content centered on genetics and the Human Genome Project.
This workshop targeted public radio reporters and producers who have specific needs that differ from those of print journalists and television reporters. The workshop was designed around three tracks 1) introduce basic science concepts that form the backdrop for the majority of science and technology stories prominent in the media today as well as provide the tools with which to evaluate developments within the science arena; 2) offer training in science journalism which requires the use of unique research tools for reporting science in a clear and comprehensible, as well as accurate way; and 3) explore techniques for honing the craft of radio writing and production specifically for science stories, which can be especially complex.
An evaluation of the effectiveness of this pilot workshop was conducted two months after its conclusion. Evaluators found that participants both retained a good deal of the information and found it useful in their work. SoundVision's plans for this pilot to be the first in a series of workshops that will bring together scientists and science educators with public radio news and information producers to create a venue for information sharing. The goal of this initiative is to improve the overall news coverage of science issues currently offered to the public radio audience.
*Supported by ELSI grant DE-FG03-99ER62782 from the Office of Health and Environmental Research of the U.S. Department of Energy.
135. Getting the Word Out on the Human Genome Project: A Course for Physicians
Sara L. Tobin1 and Ann Boughton2
1Program for Genomics, Ethics, and Society, Stanford University Center for Biomedical Ethics, Palo Alto, CA 94304 and 2Thumbnail Graphics
Progressive identification of new genes and implications for medical
treatment of genetic diseases appear almost daily in the scientific and
medical literature, as well as in public media reports. However, most
physicians completed their medical training prior to the application of
recombinant DNA technology to medical diagnosis and treatment. Such individuals
do not understand the promise or the limitations of the current explosion
in knowledge of the human genome. This project is designed to fill two
important functions: first, to provide physicians with a solid foundation
in molecular medical genetics, including the impact, implications, and
potential of this field for the treatment of human disease; second, to
utilize physicians as informed community resources who can educate both
their patients and community groups about the new genetics.
We are completing the development of a flexible, user-friendly, interactive
multimedia CD-ROM designed for continuing education of physicians in applications
of molecular medical genetics. Following the completion and evaluation
of a prototype, we have focused on content creation and upgrades to the
multimedia tool. The courseware will provide training in four areas: (1)
Genetics, including DNA as a molecular blueprint and patterns of inheritance;
(2) Recombinant techniques, stressing cloning and analytical tools and
techniques applied to medical case studies; (3) Current and future clinical
applications, encompassing technical advances and disease diagnosis and
prognosis; and (4) Societal implications, focusing on issues such as confidentiality,
discrimination, and impact on the family.
The multimedia format permits the use of animation, video, and audio, in addition to graphic illustrations and photographs. Novel features are utilized to tailor the CD to the needs of the user, and continuing medical education credits will be available through Stanford. The CD will function as a "hybrid" product, capable of seamless interaction with Internet resources and updated content.
136. Dilemmas in Commercializing Human Genome and Biotechnology Products: Developing a Case-Based Business Ethics Curriculum for Industry
Center for Biomedical Ethics; Stanford University School of Medicine; 701 Welch Rd. #1105; Stanford, CA 94305-5015
650/725-6103, Fax; -6131
This project will be conducted jointly by the Center for Biomedical Ethics and the Graduate School of Business of Stanford University. The general aim of the project is to research and develop instructional material on business ethics decision making for those involved in commercializing biotechnology products. There are four specific aims. They are to (1) research and identify the ethical and social issues that are raised when biotechnology and genomic research is commercialized, (2) develop an analytical business ethics decision making model or process that can be used by pharmaceutical and biotechnology corporations when their managers face these ethical and social issues, (3) develop comprehensive case studies in business ethics based on past pharmaceutical and biotechnology corporate behavior, and (4) apply the decision making process to these case studies as examples of how corporate managers can incorporate ethical reflection, debate, and analysis into business practices.
This project falls within the Department of Energy's interest in the preparation and dissemination of educational materials that will enhance understanding of the ethical, legal, and social aspects of the Human Genome Project. The educational materials developed will foster corporate decision making that enhances responsible use of genomic and biotechnology information and products from research to postmarketing phases of development.
The results of this research project will be directed primarily to pharmaceutical and biotechnology corporate executives, managers, board members, and attorneys. The detailed case studies developed through collaboration between the Center of Biomedical Ethics and the Graduate School of Business will be utilized within Stanford's Executive Education Program. This unique program attracts leaders from the international business community, providing a singular opportunity to educate decision makers in the biotechnology and pharmaceutical industries. The case studies developed also will be available to augment ethics curricula of graduate schools of business. Case material will be distributed via the World Wide Web and eventually through a conventional textbook format. In this way, the case material will be accessible to anyone interested in the ethical and social consequences of commercializing human genome research.
137. The Responsibility of Oversight in Genetics Research: How to Enable Effective Human Subjects Review of Public and Privately Funded Research Programs
PRIM&R, 132 Boylston Street, 4th Floor, Boston, MA 02116
There are 3 specific aims 1) to collect relevant materials such as informed consent guidelines, protocol review guidelines, review board development guidelines, etc. which have been developed by individual IRBs, biopharmaceutical companies or policy boards; and 2) to implement focus groups discussions which will seek to articulate the specific stumbling blocks to overcome in genomics protocol review as well as suggestions for tools to remove these blocks; and 3) to develop and seek review of tools to help IRBs and biopharmaceutical companies enhance the overall protection of human subjects in genetics protocols.
Aim 1: Materials have been collected from a fairly wide variety of academic institution IRBs as well as from biopharmaceutical companies which provide a good foundation for further development of materials. These are under review.
Aim 2: Five focus groups and individual interviews with IRB administrators and IRB members have been completed. In addition, one focus group and multiple individual interviews with biopharmaceutical company representatives have also been completed.
Aim 3: We are currently working to develop guidelines and tools for IRBs and industry users. These documents will be the subject of a small review panel workshop where we will seek input and modifications from select users.
We have presented some of our findings at a recent national IRB conference sponsored by PRIM&R (December 5-7, 1999; Boston, MA). Dr. Handelin gave a plenary talk and lead a workshop at this conference of 1300 IRB audience members. Feedback from these presentations supports our conclusions about the needs of IRBs and about the inherent conflicts between industry sponsors and IRBs in the contemplation of genetics protocols.
The work products of this grant are being developed currently, in the last phase of the project. We are developing guidelines and tools for IRBs and industry users. These documents will be the subject of a small review panel workshop where we will seek input and modifications from select users.
138. Confidentiality Concerns Raised by DNA-Based Tests in the Market-Driven Managed Care Setting
Jeroo S. Kotval, Kathleen Dalton, and Patricia Salkin
The University at Albany, State University of New York, Albany, NY
The United States has embarked on a unique experiment in the financing and delivery of health care through for-profit, market-driven Managed Care Organizations (MCOs). A relevant feature of these institutions is that they raise financial capital through stock offerings and are therefore beholden to investors for solvency, and accountable to them for their practices. Between 1981 and 1997 for-profit MCO enrollment grew from 12% of all MCO enrollees to 62% of all MCO enrollees. As market pressures intensify, increasing numbers of health plans are shifting to a for-profit status. Cost-controls are more vigorously pursued by such institutions because their survival depends on keeping their stock-holders satisfied. Genetic tests that provide information about future illnesses and their possible cost would be of great interest to such institutions. As the population ages and more persons seek insurance in the individual markets, underwriting of insurance will become an increasing concern.
Our study of data utilization in MCOs indicates the following: (1) MCOs have access to a full array of confidential medical information. (2) These data are indeed used for administrative and cost-containment purposes. (3) Current confidentiality practices are inadequate to protect existing medical data. (4) Not-for profit MCOs are engaged in the same practices as for-profits due to competition within the market. (5) As the industry consolidates, large data warehouses collect and analyze medical information from individual medical records for the purpose of better health care management but also for the purpose of controlling costs. (6) Segmentation in the market results in MCOs closing those businesses that they find unprofitable such as services to special needs populations, Medicaid and Medicare. (7) Existing laws are insufficient to protect individuals from uses of genetic information for purposes other than the provision of health care. (8) Policy options -- such as the right to bring action against MCOs -- do not give the average person control over discrimination by MCOs based on their genetic status.
139. An Economic Analysis of Intellectual Property Rights Issues Concerning the Human Genome Program
David J. Bjornstad1 and Steven Steward2
1Oak Ridge National Laboratory, Oak Ridge, TN and 2University of Tennessee
Information produced by the human genome program and by private investors is given asset status through the patent process. It is then traded among agents who assemble it along with other factors of production to produce products for final consumption. This project seeks to examine the efficiency of markets in effecting this assemblage and the role of patent policy and other public policies in changing this efficiency. It does this by constructing economic models and studying them using the methods of experimental economics.
Efforts during the first year have sought to develop a description of this overall process and to create a logic for studying its components. We view value being added to the stock of intellectual information through a series of phases. The first phase is the development of the base genome itself. The second phase is the identification of the functionality of the genome. The third phase is the identification of the significance of individual variability from the base genome. The fourth phase is the development of mitigating responses to variability. The final step is recovery of value by sales for final consumption. Patent policy establishes property rights across this continuum. Thus, the debate over the patentability of an EST may be framed according to the manner in which information on the base genome must be combined with information on functionality to define patent utility. Recovery of value through final consumption requires acquiring property rights across the four phases. Hence, the demand for final consumption is passed backward through the phases as a derived demand. In other words, the information about the base genome acquires value in combination with function, variability and mitigating response, as well as investment alternatives. Agents bid for patent rights not for their own sake but because of the combinatorial value.
We model this activity through a market in which agents make choices between investing in R&D to acquire property rights or by purchasing established property rights. We view agents as having resource endowments that may be "money," property rights, or some combination thereof. They interact over a series of time periods during which they can choose to invest in R&D or to buy or sell property rights. They interact through a market environment that has a number of fixed properties and several variable properties. Variable properties are used to implement alternative government policies. Government develops patent policies to guide the establishment of intellectual assets and R&D policies to guide its contribution to the stock of knowledge. For example, government may set the standard for the number of pieces of information necessary to acquire a patent, with different requirements leading to different behavior by agents. Government may affect the potential value of R&D investments by agents through its own R&D investment strategies. Other policy parameters include the degree to which information, like R&D success, is made public, by the "technologies" through which R&D investment may take place, and by the role of uncertainty, for example, as an attribute of information quality. Uncertainty can enter the market in a number of additional ways as well, each of which complicates the analysis.
A key aspect of the market is the requirement that information from the different stages be assembled in specific combinations. This is similar to an airplane trip requiring rights to takeoff and land at specific times at specific airports or the assemblage of an urban site requiring the lease or purchase of a specific configuration of properties. For example, if ESTs are patented, several EST may to be required to form a gene. This, in turn, must be combined with information from other stages. For any given family of final consumption products, total value to be distributed among the agents is limited by the demand for the final consumption products. These distributions will be used to define market efficiency and departures from it. We are interested in how market forces, technical attributes and government policies lead to different distributions of rent.
We are now completing our study of the individual parts of this system and are preparing parameters for portions of the market that can be studied using experimental economics.
140. EINSHAC's Genetics Adjudication Resource Project
Franklin M. Zweig
The Einstein Institute for Science, Health & the Courts, 2 Wisconsin Circle, Suite 700, Chevy Chase, Maryland 20815
Beginning in March, 1997, the Genetics Adjudication Resource Project (GARP) has operated from the center of the judicial system to provide science education in ELSI-related genetics to the nation's state and federal courts. 14 regional conference have been conducted involving 1,200 judges in three day meetings to apply the impact of the genomic era to the administration of justice in a changing legal environment. Approximately 250 science advisors from the National Laboratory system and academic science and health centers have anchored the series. An evaluation of the Western States Conference on Genetics in the Courtroom was recently published. See F. Zweig and D. Cowdrey, "Educating Judges for Adjudication of New Life Technologies," 83,3 Judicature 157 (November-December, 1999).
The Project's aim is to involve 2003 judges by the Year 2003. In addition to basic genetics education conferences, advanced subjects and policy-oriented meetings have been conducted and are scheduled for the future. Biomarkers, neuro/behavioral genetics, and biological property conferences have been conducted. Planned for the future are conferences on the Adjudication of Claims Related to Bioremediation and Environmental Health & Safety Activities; Adjudication of Biomedical Claims of Causation and Treatment in Cases Involving Violent Conduct Disorders; and Adjudication of Claims Over Genetically Modified Food and Agricultural Products.
The leadership conference series concerns itself with the direction of the law and gaps in policy. The GARP's Policy Courts Conference on Genetics Issues is scheduled for the Summer of 2001. An International Judicial Conference on ELSI/Genetics Issues will be planned in The Hague in April, 2001 and conducted a year later if funding permits. A bi-lateral Canadian/American Working Conversation on Biotechnology Advance, Biological Property and Ethics is scheduled for Banff, Canada, June 23-25, 2000.
New adjudication issues require new tools for the courts. Accordingly, the Project is testing remote access of neutral, independent experts for the courts; instructional witnesses for juries; and procedures for science neutrals in court-annexed alternative dispute resolution proceedings. The help of the Lawrence Berkeley, Lawrence Livermore and Oak Ridge National Laboratories has been indispensable in the adjudication tools assessment program. The added assistance of the National Institute of Environmental Health Sciences has proved supportive as well. NIEHS and DOE have executed an interagency agreement to fuel the GARP's advanced conferences, leadership conferences, and court-related tools programs.
Cases are key to judicial perspectives about issues created by the explosive growth of life technologies. To assure the availability of durable handbooks for judges in the United States and elsewhere, a Case Review Workshop is scheduled April 20 - 23, 2000 in conjunction with the Medical University of South Carolina. Judges from the United States and three global regions have been invited to critique five cases presenting complex fact patterns hinging on scientific evidence; adjudication issues for courts; state of the science summaries; and state of the law summaries. While EINSHAC prescribes no outcomes and recommends no judicial orders, we have become known for the provision of a full spectrum of considerations in aid of effective judicial case management. The Case Review Workshop systematizes that quest and is resulting in several judicial handbooks built around the case law. The first, The Judges' Handbook on Neuro and Behavioral Genetics, will be available in Summer, 2000.
159. Continuing Interest in the Legal, Ethical and Social Implications of Genome Research*
REV. William E. Nebo Community Member of the ELSI Research Planning and Evaluation Group, Member of the Human Subjects Working Group of the DOE, Member of the I.R.B of L.L.N.L., Sr. Pastor of the First Presbyterian Church of Livermore, CA, 2020
5th St., Livermore, CA 94550
For the past ten years the Department of Energy's efforts in genome research have invested $20 million in the study of the ethical, legal, and social implications of genome research (ELSI). In order to evaluate the effectiveness of the ELSI programs of both the DOE and the National Institutes of Health, these two agencies established the ELSI Research Program and Evaluation Group (ERPEG)in 1997. The final report of ERPEG is now being assembled and its recommendations for further ELSI work are ready for discussion. Rev. William E. Nebo, a DOE community representative to ERPEG, will give his perspectives on the importance of continued DOE interest in ELSI research and on the content of the ERPEG report.
|The online presentation of this publication is a special feature of the Human Genome Project Information Web site.|