|Genome Ethical, Legal, and
Social Issues Abstracts
DOE Human Genome Program Contractor-Grantee Workshop
|Author Index||Sequencing Technologies||Microbial Genome Program|
|169. Genetics Adjudication Resource
Franklin M. Zweig
During the first 19 months of project operation beginning in March, 1997, the Genetics Adjudication Resource Project (GARP) has operated from the center of the judicial system. It has provided basic science and ELSI orientation to 884 judges in attendance at nine genetics in the courtroom conferences. Approximately 60 federal and state judicial faculty members experienced several conferences and now comprise a sophisticated teacher core within the Judicial Branch. Another 25 judges attended the first and last conference in the series, experiencing both the basic orientation and an advanced course that extended the basics to biomarker testing in the toxic tort context. The GARP has designed and implemented a unique and effective judicial educational technology. The GARP has created a collaborative relationship with the Lawrence Livermore and Lawrence Berkeley National Laboratories and has mobilized the participation of 250 neutral, independent scientists, many of whom, by virtue of their participation, have increased their legal system knowledge, thereby building bridges across the deep institutional chasm separating science and the courts. The GARP has collected the most thorough genetics-related legal literature to date, covering case law and exact statutes in 20 legal categories. This collection was published in August, 1998 as an Adjudication Source Book in conjunction with a 22 judge, 16 scientist Working Conversation on Genes as Property in the American Law Tradition. GARP has published a primer for courts as a dedicated theme issue ("Genetics in the Courtroom") in the American Bar Association's main line, judicial division magazine, The Judge's Journal (Vol. 36., No. 3, 1997.) One article (Walsh, Admissibility) was selected as the best of the ABA for 1997. The GARP has produced a durable hypothetical case library and workbooks as initial archives for judges' use in early case assignment. These accomplishments provide a platform for ELSI/genetics-related Judicial System leadership as the Human Genome Project's research moves toward establishing a reference map and sequence.
GARP objectives for the next three years include: (1) Conduct of a 1999 national neurogenetics in the courtroom conference; and California, Southeast, and Arizona/Southwest regional conferences on genetics in the courtroom for 500 additional federal and state, trial and appellate judges; (2) Conduct, in conjunction with Lawrence Livermore National Laboratory, of hands-on training for an expanded judicial faculty, dedicated leadership conference for the Chief Justices of our state courts, and a joint egislative/judicial conference; (3) Development of a model and procedural guidelines for the real time teleconferenced and videotaped testimony of court appointed expert witnesses in genetics-related cases; (4) an Alternative Dispute Resolution Techniques Guide Book with respect to ELSI/Genetics issues, a means for courts to manage genetics-related conflicts without subjecting the parties to the stress of formal trials; (5) Creation of a plan for international Judicial dialogues on gene testing and therapy issues; (6) Completion of a video ELSI-genetics curriculum for courts, to accompany the volume entitled "Genetics in the Courtroom: Judge's Handbook" to be printed for distribution in January, 1999; (7) Completion of a background paper for courts on the state of genetic property doctrines and issues; (8) Completion of a law school moot court initiative to orient future judges and law faculty to the management of ELSI-genetics related cases; (9) conduct of a working conversation on the legal status of genetic counselors; (10) institution of an ELSI/Genetics teaching courtroom in the District of Columbia as part of the EINSHAC's newly-established Law and Science Academy in the Courts of the District of Columbia; (11) development of a case tracking and GARP impact evaluation system.
These resources will promote judicial leadership
on behalf of our society. Given the patchwork, inconsistent nature of state
legislation concerning genetic property, privacy, and discrimination, the
courts will be the bulwark of our ability to integrate new science with
our framework of emerging as well as established rights. Given the paralysis
of Congressional action, the Judicial Branch will be pushed front and center
to interpret and adapt the existing law to rapidly spiraling new technological
domains. It is timely and feasible to provide a durable and full toolbox
for a judiciary that will be tested as never before at the margins of changing
ethical precepts, social aspirations and high velocity science.
170. Measuring the Effects of a Unique Law Limiting Employee Medical Records to Job-Related Matters
The grant attempted to measure the effects
of a Minnesota law enacted in 1983, which prohibits employers from obtaining
any employee medical information that is not strictly related to the ability
to perform the job. The investigators reviewed the cases filed with the
Minnesota Department of Human Rights, conducted interviews with Minnesota
employment lawyers, surveyed occupational physicians and human resource
managers, and assessed Minnesota economic data. The study concluded that
the effects were not ascertainable because there was very little knowlege
of the existence of the law by any of the groups. Nevertheless, the investigators
determined that the Minnesota approach remains a more attractive alternative
to preventing genetic discrimination in employment than genetic-specific
laws recently enacted in 18 states. The findings are being published as:
MA Rothstein, BD Gelb, & SG Craig, "Protecting Genetic Privacy by Permitting
Employer Access Only to Job-Related Employee Medical Information: Analysis
of a Unique Minnesota Law," American Journal of Law and Medicine
24 (1998): 399-417.
171. TRUTH & JUSTICE: Science and Its Appeals
TRUTH & JUSTICE is a three-part, three-hour documentary Special for national broadcast on PBS. Produced by Backbone Media (a public benefit, nonprofit charitable corporation*) in association with Oregon Public Broadcasting, TRUTH & JUSTICE will stimulate the public to think critically about the real strengths and important limits of science both in framing and in resolving social conflict. In three parts, the program will profile individuals - judges and scientists, lay people and lawyers - as they grapple with questions of science and law in a handful of actual cases. In Part One, Novel Cases will demonstrate how new technologies - particularly genetic technologies - create unexpected, unprecedented legal conflicts which challenge fundamental legal, ethical and social principles. In Part Two, Judging Science will look at what happens when new laws oblige the courts to distinguish between "good" and "bad" science. In Part Three, Due Process will examine science as one "way of knowing the world," often in conflict or competition with other ways of knowing in the courts.
In the style of A Question of Genes, the PI's recent award-winning, DOE-funded PBS program, each hour will closely observe two or three pairs of people 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. By profiling people at the center of actual conflicts, it will use compelling, accessible human drama as its vehicle.
Use of the DOE funds has focused on four goals; half has been spent on the first three goals, and the rest has been reserved for the fourth goal: (1) development of the conceptual framework and specific story content and treatment for the program; (2) development of a substantial body of institutional and individual support for the project, including an active and distinguished Board of Advisors, a community of academic and professional support and advice, an experienced production and promotion team, a distribution plan, and direct and ongoing relationships with story participants; (3) development toward other funding, including extensive foundation research and the submission of proposals to targeted foundations and federal agencies; (4) the production of a story from the program to aid in fund-raising and to launch the project.
*Formerly NoelEye Documentaries
172. The DNA Files: Unraveling the Mysteries of Genetics
A Nationally Syndicated Series of Radio Programs on the Social Implications of Human Genome Research and its Applications
Bari Scott and Jude Thilman
The DNA Files is a series of nationally distributed public radio programs furthering public education on developments in genetic science. The series began broadcast on, at this writing, over 140 stations in November 1998. The producers anticipate an ultimate carriage of approximately 200 stations. The DNA Files is hosted by John Hockenberry and is distributed by National Public Radio. Program content is guided by a distinguished body of advisors and includes the voices of prominent genetic researchers, people affected by the clinical application of genetic medicine, members of the biotech industry, and others from related fields. They provide real-life examples of the complex social and ethical issues associated with new discoveries in genetics. In addition to the general public radio audience, the series targets educators, scientists, and involved professionals. Ancillary materials are distributed in digital form through the project's web site, which also features ethical scenarios with which the visitor can interact. The site address is http://www.dnafiles.org. Tapes and transcripts are available on request by calling 303.823.3000.
With information linking major diseases such as breast cancer, colon cancer, and arteriosclerosis to genetic factors, new dangers in public perception emerge. Many people who hear about them could mistakenly conclude that these diseases can now be easily diagnosed and even cured. On the other end of the public perception spectrum, unfounded fears of extreme, and highly unlikely, consequences also appear. Will society now genetically engineer whole generations of people with "designer genes" offering more "desirable physical qualities"? The DNA Files will ground public understanding of these issues in reality. The programs in the series are documentary in format, featuring on location interviews, as well as radio theater and other techniques for conveying information about genetics and the social issues. An overview program, entitled "The Human Genome Project: Mapping the Future" consists of a hosted panel discussion with experts, with questions from the lay public interspersed into the discussion.
These nine programs describe the basic science of DNA, genes and heredity, while illustrating the accompanying social and ethical issues. "Law and the Genetics of Identity," for example, reviews the scientific methodology of genetic fingerprinting and explains the accuracy and use of this tool in criminal cases, as well as for establishing the identity of missing persons. "Gene Therapy: Medicine for Our Genes" follows the case of one man with mesothelioma, who is being treated with experimental gene therapy. His case provides a realistic illustration of the promise, as well as the current limits, of gene therapy. Other shows include "Genetics and Biotechnology: DNA in the Marketplace," "Prenatal Genetic Testing: Do You Really Want to Know Your Baby's Future?" and "The Genetics of Human Evolution: Where Did We Come From? Where Did We Go?"
Supported by ELSI grant DE-FG03-95ER62003 from the Office of Health and Environmental Research of the U.S. Department of Energy.
173. The Science and Issues of Human DNA Polymorphisms
David Micklos, John Kruper, Scott
Bronson, and Matthew Christensen
The DOE Program introduces high school biology faculty to a laboratory-based unit on human DNA polymorphisms, which provides a uniquely personal perspective on the science and ELSI aspects of the Human Genome Project. Thus far, 170 high school faculty have participated in eight three-day workshops held in Atlanta, Boston, Denver, Los Angeles, New York, Richmond, Salt Lake City, and San Francisco. Participants learn simplified lab techniques for amplifying three types of DNA polymorphisms: an Alu insertion, a VNTR repeat, and point mutations (SNPs) in the mitochondrial (mt) control region. These polymorphisms illustrate the use of DNA variations in disease diagnosis, forensic biology, and identity testing - and provide a starting point for discussion of the uses and potential abuses of genetic technology.
During the past year, we developed ready-to-use teaching kits to support the three human PCR experiments introduced in the DOE workshop. The kits, which are now available through Carolina Biological Supply Company, incorporate a three-part PCR chemistry that greatly simplifies reaction set-up and improves reproducibility. Template DNA (obtained from cheek or hair cells) is added to primer mix and a freeze-dried reagent pellet (containing Taq polymerase, deoxynucleotide triphosphates, and buffer). Loading dye is incorporated in the primer mix, allowing amplified reactions to be immediately loaded for gel electrophoresis.
We also provided proof of concept for a Sequencing Service to process mt DNA samples submitted by teachers around the country. During each DOE workshop, participants amplified the mt control region, and the samples were returned to the CSHL Genome Sequencing Center for cycle sequencing. The completed sequences were then posted at the DNALC's WWW site (http://www.dnalc.org/) in a Student Sequence Database, which currently contains 350 sequences. This process was replicated with 59 student samples submitted, by mail, from teachers in New York, Maryland, Utah, and Virginia. A dedicated DNA sequencer to support student sequencing is included in the capital budget for a 6,000 square foot BioMedia addition to the DNALC, on which construction will begin next year.
We have continued to develop step-by-step Internet templates that allow students to use their own polymorphism data to solve cases illustrating key principles of genomic biology. In one case, the Student Allele Database facility is used to compare students' Alu insertion data with data from world populations. In another case, multiple sequence alignment is used to compare a student and reference mt DNA sequences to determine whether Neanderthal hominids were our direct ancestors. We are currently developing Bioforms that further simplify data submission/presentation - allowing students to focus on the biological question at hand, rather than being overwhelmed navigating complex forms at Internet genome servers. The initial Bioform allows students to analyze mt DNA sequences to identify the remains of the Romanov family and determine if Anna Anderson was the missing princess Anastasia.
174. Medical Confidentiality in the Market Driven Managed Care Setting: Does the Law Protect Against Misuse of DNA-Based Tests?
J.S. Kotval, Anthony Clarizia, and
The rise of managed care as the primary method of health care delivery raises new concerns regarding the misuse of confidential medical information -- especially the misuse of DNA-based tests that predict the likelihood of late-onset, high-cost disorders. We have surveyed state and federal law related to protection of medical confidentiality, and find several gaps in the legal framework intended to protect individuals from misuse of their genetic information in the managed care setting. The occurrence of these gaps stems primarily from reliance on a patchwork of state laws, regulations and case law to protect confidential medical information through professional licensure laws, medical malpractice laws and regulations, and by direct protection of an ill-defined entity: the medical record. These measures have become inadequate to protect medical confidentiality within the context of many managed care contracts. In addition, large numbers of persons insured through managed care plans that fall under ERISA are not touched by the state policy framework and no laws directly address the mis-use of genetic information within managed care plans that have the effect of discriminating against individuals with high cost illnesses. Furthermore, the absence of uniformity among states with regards to law and public policy creates confusion for both the managed care organizations that operate in multiple jurisdictions and for the consumers that seek care in more than one state.
In the absence of federal or state law to protect individuals from the unconsented dissemination of genetic information, there are few legal grounds for a successful cause of action against a managed care organization. Legal theories that could serve as basis for successful causes of action include vicarious liability through respondeat superior and ostensible agency theories. In assessing the merits of a plaintiff's case claiming discrimination, the courts are likely to consider issues including the structure, administration and internal procedures implemented by the managed care organization; the representations and disclosures made in contracts, brochures, and advertising; the financial incentives, cost containment procedures and utilization review procedures used by the managed care organization and, of course the selection, control and contracts between the managed care organization and the physician. Even if the plaintiff does have 'the law on his side' it would take him or her years to resolve the matter, not to mention the expenses involved, thus creating a disincentive to seek redress and creating a hostile environment for advocating consumer rights. Recommendations regarding appropriate federal and state law are being explored.
175. Geneletter: An Internet Newsletter on Ethical, Legal, and Social Issues in Genetics
Dorothy C. Wertz and Philip R. Reilly
Geneletter (http://www.geneletter.com) is among the few informative and readable sites on ELSI topics aimed at the nonspecialist. It has received over 1 million hits and 200,000 site visits since September 1996. Currently it has about 450 users (2500 hits) a day, with an average session length of 9 minutes. Judging from our emails, many users are students, ranging from sixth grade to postgraduate, but some are college deans, science fiction writers, state policymakers, epidemiologists, and law professors. At least 14% are international, in Canada, Australia, UK, Germany, Singapore, Sweden, France, Japan, Malaysia, New Zealand, Netherlands, Italy, Norway, Israel, Philippines, and Brazil. In North America, major user areas are VA, CA, OH, ONT, WA, MA, FL, PA, IL, and MD. Topics receiving greatest visitor attention are cloning (by far the most popular), genetics of homosexuality, genetic "Adam and Eve," overview of genetic screening, the calico cat, false paternity, teratogens, and eugenics. Geneletter has also been used in a course on Genetics and Identity at a four-year technical college, with evaluation of ethical views before and after use.
176. Competition Between Public & Private Research Funding in Genomics
Rebecca S. Eisenberg
The field of genomics exhibits considerable overlap in the type of research that is supported by public and private funding. Recent announcements from two private firms that they plan to complete the DNA sequence of the human genome ahead of the publicly funded HGP is the most recent, and perhaps the most dramatic, example of this phenomenon. Sometimes public and private institutions commingle funds and work together collaboratively, but sometimes they are openly competitive. These interactions shed an interesting light on the relationship between public and private funding of scientific research. A number of features of public-private interactions that have been highly salient in this particular setting play little role in standard accounts of the relationship between public and private research funding, including scientific rivalry for priority in achieving overlapping if not identical goals, a tortoise-hare struggle over the relative virtues of speed and thoroughness, and recurring controversies over intellectual property and terms of access to data and discoveries.
A standard account of the relationship between public and private research pictures publicly-funded research as promoting activities that are entirely distinct from the sort of research that private firms are likely to pursue with their own funds. In his classic argument for continued government funding of research following the conclusion of World War II, Vanevar Bush called for government funding of "basic research" to compensate for inadequate commercial incentives to invest in the pursuit of fundamental knowledge, as distinguished from "applied technology." Economists have similarly suggested that government research funding should compensate for "market failure" that limits private motivation to invest in research, despite the high social value of such investments, because of uncertainty as to who will profit from research results and difficulty in appropriating results as intellectual property. An alternative justification for public funding of research that finds little support among economists but nonetheless enjoys considerable political popularity emphasizes promoting technological innovation by U.S. firms. In this account government-funded research is pictured as an advanced scouting mission to identify promising opportunity for short-sighted or risk-averse firms. None of these accounts contemplates public funding of research that is competitive with private sector research.
When does it make sense to allocate taxpayer dollars to funding research that that resembles work being pursued in the private sector? Are there circumstances in which public funding of research may be justified as a means of forestalling private appropriation of research results as intellectual property? When are judgments about the wisdom of patenting certain types of discoveries best left to the patent system in its determinations of what may be patented, and when are such judgments appropriately made by funding agencies in deciding what sort of research to fund and in limiting the rights of grantees to pursue patent rights? What are the proper roles of the patent system and research funding agencies in mediating the boundaries between public and private in research science, and what sorts of judgments on this issue are within the competence of the institutions that manage these systems?
177. Microbial Literacy Collaborative: Intimate Strangers: Unseen Life on Earth
Cynthia A. Needham and Susan E.
A Report from the Microbial Literacy Collaborative
The Microbial Literacy Collaborative (MLC), a partnership of organizations committed to advancing scientific literacy through a focus on the microbial world, will report on four components of the initiative: (1) the science documentary for public television, entitled Intimate Strangers: Unseen Life on Earth (2) the set of 17 hands on community based microbial activities entitled Microbe Mania, and (3) youth leadership training for pre-college students from traditionally under-represented communities and (4) a 12 part telecourse for undergraduate use. The organizations that comprise the MLC include The American Society for Microbiology, The National Association of Biology Teachers, Oregon Public Broadcasting, and Baker & Simon, Associates, an independent production company. Other organizations include The Association of Science-Technology Centers, Inc. and The American Association for the Advancement of Science.
The MLC is funded by The Department of Energy through the Human Genome Project, The National Science Foundation, The American Society for Microbiology, the Annenberg/CPB Project, The Corporation for Public Broadcasting, and The Archer Vining Davis Foundations.
Intimate Strangers: Unseen Life on Earth has been completed and is expected to air on PBS in the fall of 1999. The four hours of the series include: (1) "The Tree of Life," (2) "Dangerous Friends and Friendly Enemies," (3) "Keepers of the Biosphere and (4) "Creators of the Future." "The Tree of Life" delves into our evolutionary past. The key message of this hour is that all living things today evolved from microbes and share fundamental biologic properties with them. "Dangerous Friends and Friendly Enemies" examines our ancient rivalry with the microbial world. "Keepers of the Biosphere" explores the central role that microbes play in sustaining the earth's ecosystems. "Creators of the Future" examines our present and future use of microbial technologies to solve long standing problems that affect the way we live. We will have one hour of the series, "The Tree of Life," available for viewing at the conference.
Microbe Mania is a collection of 17 hands on activities designed for use in both informal and formal learning environments. The activities complement the major themes within the television documentary. They require little or no knowledge of microbiology and little or no specialized equipment to conduct. The activities will support open ended experimental design and help to address elements of the National Science Education Standards. We will have an example of the activities available for demonstration.
Microbe Mania Youth Leadership Training is a week long experience 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. We will report on the first of two summits, which was held in August 1998, on the St. Paul campus of the University of Minnesota. The training experience was organized with The Association of Science-Technology Centers, Inc. and their Youth Alive! Program. Participants represented 12 science museums from around the country, with youth leaders drawn primarily from challenged home environments.
The Unseen Universe is a 12 part telecourse for use in both undergraduate and pre-college classrooms. Each 30 minute film focuses on a different aspect of the microbial world. The telecourse was designed to address the curriculum standards endorsed by the American Society for Microbiology and will be accompanied by teacher and student guides. The telecourse will support a full distance learning course in microbiology or serve as supporting materials for traditional classroom environments. We will have a 30 minute segment of the telecourse available for viewing.
178. The Responsibility of Oversight in Genetics Research: How to Enable Effective Human Subjects Review of Public and Privately Funded Research Programs
Barbara Handelin and Susan Katz
IRBs are under extreme stress to provide adequate review of all manner of protocols. A central assumption that underlies the IRB's charge to protect the rights and welfare of human subjects involved in research, is that each individual IRB will possess or develop the requisite expertise to accomplish this mission adequately. The increasingly complex ethical, regulatory and scientific issues presented to IRBs in reviewing genetic research protocols challenge the validity of this assumption. Individual IRBs have inadequate time and resources to develop the necessary genetics expertise and facility to deal with this new challenge. Thus, our project has been developed to solicit specific needs from IRBs so that specific working "tools" can be created to address those needs. We will report on our progress toward that end. But that is not all....as we are also addressing the concomitant increased pressure on biotech and genomics companies to conform to a standard of practice in conducting research studies and in developing marketing plans for gene based products and services. As such companies become engaged in clinical studies involving human subjects or tissues it has become apparent that they may need help in effecting quality, IRB-like review. In this project we are seeking to exploit the synergistic needs and expertise found in these two types of organizations: the ethics oversight capabilities and systems of IRBs and the genome expertise in industrial R&D shops. We will report on the dynamic interplay and relative perspectives that IRBs and the biotech communities have of one another and how we are proposing to weave common solutions to critical issues in the safe and ethical participation of human subjects in genetic research.
179. Your World/Our World - Exploring the Human Genome
Jeff Alan Davidson
The Pennsylvania Biotechnology Association (PBA) in cooperation with the Alliance for Science Education (ASE) publishes the biotechnology science magazine YOUR WORLD/OUR WORLD to introduce middle and high school students to the underlying science and the social issues raised by modern biological research and technology. In the Spring of 1996, with partial DOE funding, a special enlarged issue of YOUR WORLD/OUR WORLD dealing with the underlying science of genomics, and the ethical, legal, and social issues raised by the Human Genome Project (HGP) was published.
PBA and ASE are developing additional instructional materials for use by middle and high school students to facilitate a more extensive presentation of the subjects covered in the special issue. These materials are being built in two phases. First, by developing new materials by PBA to create a comprehensive supplemental materials package that provides resources in several different media. Second, by running a national contest for science teachers and students to encourage classroom development of new and original approaches to teaching the material. Materials from both phases will each in turn be packaged and made available to the 45,000 middle school and high school biology teachers in the United States over the next 24 months.
Phase I Materials
Eight multimedia lectures designed for teacher use and richly annotated with teacher notes have been developed that can be presented directly from a CD-ROM or from color or laser printed overheads that can be printed from the disk. The lectures make extensive use of three-dimensional animations to explain the science clearly and interestingly. The materials also include an extensive glossary and directory of internet resources.
The lecture topics are summarized below:
Articles for the General Press or Radio or Television
Debra L. Collins
Over the past few years, the Human Genome Project has increased our knowledge about human genetics dramatically. However, it is difficult to keep up with all the new technological advances. Secondary science and biology teachers have difficulty determining which new genetic advances need to be incorporated into their curriculum. As well, families, health care providers, and the general public need accurate human genetics information, and a background information to help them interprete all the new information in newspapers, television, and other media.
To help bridge the gap between the general public's background genetic knowledge and new genome technological advances, we designed a national education program for secondary science and biology teachers. Since approximately 95% of high school students take a biology class, these teachers' classrooms may provide the last formal science course before their students become parents, voters, legislators, policy makers, journalists, or others needing accurate genome information.
Over 5 years, 177 secondary teachers attended a series of human genome workshops focused on applications of human genome project technology, including ethical, legal, and social implications (ELSI). The project required a two year committment of each teacher, who attended summer workshops, used new materials with students, conducted peer and community education programs, and contacted genetic and ELSI experts to enhance classroom experiences. Ongoing networks between teachers, liaisons with genetic professionals, and on-line computer communications continue to help educators and their students obtain current genome information.
Teachers participating in the project became more prepared and confident to teach complex genome technology and applications than their peers (p<.05). They expanded their knowledge of human genetics, and integrated more information into existing science curricula, increasing time devoted to teaching genetics. Teachers developed new school genetic courses, and advised district curricula development committees to increase human genetics course content.
Participants became better prepared to help students understand the ramifications of HGP discoveries and readily access information on many aspects of the Human Genome Project, including decisions regarding genetic testing. Their students scored significantly higher (p<.05) on a survey of knowledge, compared to students whose teachers did not attend the workshop.
Participants presented genetic programs to over 10,000 peers. Through this dissemination, more than 1,000,000 students were exposed to new genome information, resources, and applications.
Continued and increased support for teacher education workshops is needed to increase literacy on human genetic topics not available in current published textbooks.
Genetic resource materials, lesson plans, the mentor network, and career information are on the web site: http://www.kumc.edu/gec
181. Electronic Scholarly Publishing: Foundations of Genetics
Robert J. Robbins
As the Human Genome Project (HGP) moves toward its successful completion, more and more people are becoming interested in understanding this project and its results. Since the HGP has significant ethical, legal, and social implications for all citizens, the number of individuals who do, or should wish to become familiar with the project is very high. 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 the results of HGP research, however, requires a familiarity with the notions of basic genetics, and this is often not available to most individuals. We have created an 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. Together, this collection should be of great use to those wishing to appreciate and understand genetics and genome research.
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.
The site is intended to be useful not only to students, teachers, scholars, but also to general readers. Indeed, we consider the general public to be our primary audience. Data currently available suggest that we are succeeding in reaching our target audience. The bulk of our users are accessing the site from clients that use a dial-up Internet service provider. Since scholars and scientists usually have full Internet access from their university facilities (that all have *.EDU domains), the data suggest that the bulk of our users are from the general public. We specifically have logged visits from more than 100 high-school sites and we know of several high-school web projects that have established links to the ESP 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. By January 1999, we will move our site to a different physical server that will allow us much more control over the functionality that we can deliver. This will allow us to offer custom services to the user, including personalized searches and file storage, as well as custom annotated versions of classic texts.
182. The Community College Initiative
Sylvia J. Spengler and Laurel Egenberger
The Community College Initiative prepared community college students for careers in biotechnology. Lawrence Berkeley National Laboratory (LBNL) collaborated with California Community Colleges in developing mechanisms that encourage students to pursue science studies, to participate in forefront laboratory research, and to gain work experience. The initiative was structured to upgrade the skills of students and their instructors through Summer Student Workshops.
The Summer Student Workshops provided a four-week summer residential program for students who had completed the first year of the biotechnology academic program. Ethical, legal and social concerns were integrated into the laboratory exercises. Students learned to identify commonly shared values of the scientific community as well as increase their understanding of issues of personal and public concern. In the three-year period of the grant, we involved over thirty-five students. Students in the second and third summers were awarded laboratory internships.
183. Genes, Environment, and Human Behavior
The Biological Sciences Curriculum Study (BSCS) is developing an instructional module titled Genes, Environment, and Human Behavior for use in high school biology classes. The module will rectify the deficient treatment of the biology of behavior in the current curriculum and will help to dispel misconceptions about genes and human behavior that often pervade media reports of research in this area. The materials also will address some of the ethical, legal, and social issues generated by research into the biological basis of behavior and will help to change traditional assumptions about the teaching of genetics at the high school level. The draft instructional activities are designed to help students move through the following major concepts:
In May of 1998, BSCS field tested a complete draft of the module with 20 teachers and over 1200 students in 13 states. Students completed pre- and post-tests to determine common misconceptions about behavioral genetics and to assess changes in student learning after using the module. Statistical analysis of the data showed that students improved significantly on every learning outcome. In addition, mean pre-test scores of 56% correct improved to 71% correct on the post-tests (p < 0.001).
After analyzing the field-test data, BSCS hosted the second meeting of the project's advisory committee, which made a number of recommendations for improving the module. In late July 1998, BSCS completed its second and final writing conference, during which experts in behavioral and medical genetics, ethics, and high school biology teaching produced drafts of a revised module based on the recommendations of the advisory committee. BSCS staff are currently revising those drafts to produce final materials, which will comprise student activities, support materials for the teacher, and extensive background information for teachers. Following production and printing, BSCS will distribute the module free of charge to 20,000 interested biology teachers.
184. Hispanic Role Model and Science Education Outreach Project: Human Genome Project Education & Outreach Component
Currently, Hispanics make up between 11-15 percent of the U.S. population; about 30 million people. Hispanics are also the fastest growing minority in the U.S. The dominant language of 64 percent of all Hispanics living in the United States is Spanish. Furthermore, Hispanics feel discriminated against by the U.S. health care system. According to the American Journal of Health Promotion (Vol.9, No. 4 1994/95):
Hispanics are largely "out of the loop" of the public health information mainstream because of the substantial linguistic preferences of Hispanic residents. For example, disseminating information related to the rapid advances in health and science technology, like the HGP-ELSI, and information about how and where to access health care services, may not be targeted to or successfully reach Spanish speaking residents.
This DOE-funded project is currently completing its second year of providing Spanish radio programming and outreach services that focus on the HGP and its scientific, medical ELSI implications. The purpose of this project is to help inform the Spanish-speaking population in the U.S. about the HGP and its ELSI implications, and motivate them to access the resources available for further education and information on these issues.
185. The Hispanic Educational Genome Project
Margaret C. Jefferson, Mary Ann
Sesma, and Patricia Ordonez
The primary objectives of this grant were to develop, implement, and distribute culturally competent, linguistically appropriate, and relevant curricula that lead to Hispanic student and family interactions regarding the science, ethical, legal, and social issues of the Human Genome Project.
Two curricula were developed: (a) that
designed for students and (b) that designed for parents. The student component
consists of available materials (e.g., the BSCS HGP-ELSI curricula; laboratory
projects; University of Washington High School Human Genome Program exercises;
Virtual FlyLab; and more) and newly developed materials (e.g., teacher-developed
activities in four major units of biology; student-developed surveys; and
more). The parent component consists of newsletters written by students
available in both English and Spanish and parent focus groups which discuss
issues related to genetics and health. Discussions have been in both English
and Spanish with translators available. Information on materials are available
via our WWW home page:
*Supported by a grant from the Director,
Office of Energy Research, Office of Health and Environmental Research
of the U.S. Department of Energy under grant # DE-FG03-94-ER61797.
Maureen Munn and Leroy Hood
The discovery that DNA is the information molecule of living organisms is one of the most significant scientific breakthroughs of the 20th Century and is critical to our understanding of inheritance, development, biodiversity and evolution. Advances in genetics, molecular biology and biotechnology have revolutionized biological research, medicine, agriculture and manufacturing, and will continue to do so in the 21st Century. Along with many benefits, genetic research and biotechnology evoke complex ethical and legal issues that impact individuals and society as a whole. Pre-college genetics education should do the following:
The Ethics unit focuses on presymptomatic genetic testing. This module was developed by Sharon Durfy and Robert Hansen from the UW Department of Medical History and Ethics. The module utilizes a role-playing scenario to involve students in the complex issue of whether, as a character in the scenario, they would choose to be tested presymptomatically for Huntington's disease (HD). Materials provided include background information on the genetics, molecular biology and clinical aspects of HD, directions for constructing a pedigree and analyzing the laboratory data used to determine whether someone carries the HD gene, a tool for assessing student learning, and a teacher's guide. Students use a decision making model to assist them in making a justifiable ethical decision.
Our program offers professional development for teachers from Washington state and other locations in the US and Canada during a one-week summer workshop. Activities include completion of the DNA sequencing and ethics modules, presentations by guest speakers, and informal discussions about classroom implementation and student assessment. During the academic year, local teachers are provided with the necessary equipment and reagents to carry out the experiment in their classrooms. Teachers from outside the Seattle area can borrow equipment through the loan program of the Howard Hughes Program at Washington State University (WSU), while teachers in the Vancouver area are supported by a partner site at WSU Vancouver. Scientist volunteers from UW and local biotechnology companies assist during classroom experiments. This program is currently serving over 50 high school and college teachers in Washington State, as well as 20 teachers outside the state.
Molecular Biotechnology's Education Outreach contributes to K through 12 science education through a variety of outreach efforts. These outreach programs share several important features, including a strong emphasis on presenting science as inquiry and the development of partnerships between teachers and scientists. Genetics is an integral part of many of these outreach programs. For example, in conjunction with the Seattle Partnership for Inquiry-Based Science, Education Outreach presented one-week workshops on genetics and biodiversity for Seattle elementary teachers in the summer of 1998. The Integrated Science Partners, a Howard Hughes-funded program focused on the development of curriculum for middle school science teaching, has developed a module on genetics. We are currently coordinating a project called the Genetics Education Partnership, in conjunction with teachers and genetics professionals from around the state. The purpose of this project is to examine genetics teaching in grades K through 12, identify useful materials for teaching genetics at different grade levels and foster the development of genetics learning communities throughout the state.
Munn, M. M., O'Neill Skinner, P., Conn, L., Horzma, G. and Gregory, P. "The Involvement of Genome Researchers in High School Science Education". Review submitted to Genome Research.
Internet-based Publications and Projects:
Genetics Education Database
Web-site for the High School Human Genome Program (http://hshgp.genome.washington.edu)
Web-site for the Genetics Education Partnership (http://genetics-education-partnership.mbt. washington.edu)
187. Getting the Word Out on the Human Genome Project: A Course for Physicians
Sara L. Tobin and Ann Boughton
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 individuals do not understand the limitations or the promise of the current explosion in knowledge of the human genome. This is also true of physicians, most of whom completed their medical training prior to the application of recombinant DNA technology to medical diagnosis and treatment. This lack of training prevents physicians from appreciating many of the recent advances in molecular genetics and may delay their acceptance of new treatment regimens. In particular, physicians practicing in rural communities are often limited in their access to resources that would bring them into the mainstream of current molecular developments. This project is designed to fill two important functions: first, to provide solid training for physicians in the field of 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 engaged in the development of a flexible, user-friendly, interactive multimedia CD-ROM designed for continuing education of physicians in applications of molecular medical genetics. We have the designed the navigational system, completed a prototype, carried out a preliminary evaluation of the prototype by physicians, and continued to create content. 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 the human genome project, technical advances, and disease diagnosis and prognosis; and (4) Societal implications, focusing on issues such as privacy and impact on the family. The CD format permits the use of animation, video, and audio, in addition to graphic illustrations and photographs. A hypertext glossary, user notes, practice tests, and customized settings will be utilized to tailor the CD to the needs of the user. Brief, multiple-choice examinations will be evaluated for continuing medical education credits by the Stanford Office of Postgraduate Medical Education. The CD will function as a 'hybrid' product, capable of seamless interaction with Internet resources. This capability permits continuous updating of the course content.
The development of the CD is supervised by a Board of Advisors, and the completed courseware will be evaluated by physician focus groups. Commercial distribution will be arranged through the Stanford Office of Technology Licensing. The courseware is designed to provide a powerful tool for the education of physicians and the public about the potential of the Human Genome Project to benefit human health.
188. Individualizing Medicine Through Genomics: Medical and Social Implications
Henry T. Greely, Barbara A. Koenig,
and Laura L. McConnell
This grant partially supported a process that led to a conference at Stanford on October 17, 1998 on the implications of the increasing use of genetic variation in medicine. Scientists, physicians, and industry increasingly are recognizing the potential medical importance of such variation. The genetic variation involved can be that of a pathogen, a tumor, or healthy human tissue; the medical implications may be in prevention, treatment, or prognosis. In all these respects, the potential for applying individualized genomic information to medicine is an extension of existing knowledge based on the growing availability of inexpensive and convenient determination of what DNA sequence in known genes. Among the specific topics examined were
189. AAAS Congressional Fellowship Program
Few individuals in the genetics community are conversant with federal mechanisms for developing and implementing policy on human genetics research. In 1995 the American Society of Human Genetics (ASHG), in conjunction with DOE, initiated an American Association for the Advancement of Science (AAAS) Congressional Fellowship Program to strengthen the dialogue between the professional genetics community and federal policymakers. The fellowship will allow genetics professionals to spend a year as special legislative assistants on the staff of members of Congress or on congressional committees. Directed toward productive scientists, the program is intended to attract independent investigators.
In addition to educating the scientific community about the public policy process, the fellowship is expected to demonstrate the value of science-government interactions and make practical contributions to the effective use of scientific and technical knowledge in government. The program includes an orientation to legislative and executive operations and a year-long weekly seminar on issues involving science and public policy.
Unlike similar government programs, this fellowship is aimed primarily at scientists outside government. It emphasizes policy-oriented public service rather than observational learning and designates its fellows as free agents rather than representatives of their sponsoring societies.
One of the goals of DOE and ASHG is to develop a group of nongovernmental professionals who will be equipped to deal with issues concerning human genetics policy development and implementation, particularly in the current environment of health-care reform and managed care. Graduates of this program will serve as a resource for consultation in the development of public-health policy concerning genetic disease.
Fellowship candidates must demonstrate exceptional basic understanding of and competence in human genetics; hold an earned degree in genetics, biology, life sciences, or a similar field; have a well-grounded and appropriately documented scientific and technical background; have a broad professional background in the practice of human genetics as demonstrated by national or international reputation; be cognizant of related nonscientific matters that impact on human genetics; exhibit sensitivity toward political and social issues; have a strong interest and some experience in applying personal knowledge toward the solution of social problems; be a member of ASHG; be articulate, literate, adaptable, and interested in working on long-range public policy problems; be able to work with a variety of people of diverse professional backgrounds; and function well during periods of intense pressure.
DOE Grant No. DE-FG02-95ER61974.