Ethical, Legal, and Social Issues
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Geneletter: An Internet Newsletter on Ethical, Legal, and Social
Issues in Genetics
Dorothy C. Wertz, Philip P. Reilly, Robin J.R. Blatt
Geneletter has reached a wide audience, with 348,412 hits Geneletter has reached a wide audience, with 348,412 hits and 54,083 user sessions between September 18, 1996 and October 6, 1997. Current readership is about 9000 user sessions per month (323 per day), with an average length of 7 minutes. Readers range from elementary school students to graduate and professional school students, and include people with genetic conditions, lawyers, and medical professionals. 17% are international, including Canada, Australia, United Kingdom, Sweden, Japan, france, Germany, Singapore, Malaysia, New Zealand, Israel, Norway, Brazil, and Italy, as the leading nations. Our content, in the seven issues published to date, includes ethics, science, medicine, law, international views, education, society, book reviews, and a digest of the news about genetics. Reader interest has focused on cloning, the genetics of homosexuality, "The Calico Cat, the Munchkin, and Achondroplasia," "Adam, Eve, and Mitochondria," and basic information about genetic testing. Reader queries have focused on popular science issues (cloning, Jurassic Park), accuracy of paternity testing, causes of miscarriage, insurance coverage, and material for student papers, rather than on ethical concerns. This project demonstrates the feasibility of using the Internet to educate people about genetics.
Communicating Science in Plain Language: The Science + Literacy for Health: Human Genome Project Maria Sosa, Judy Kass, and Tracy Gath
Recent literacy surveys have found that a large number of adults lack the skills to bring meaning to much of what is written about science. This, in effect, denies these adults access to vital information about their health and well-being. To address this need, the American Association for the Advancement of Science (AAAS) has developed a 2-year project to provide low-literate adults with the background knowledge necessary to address the social, ethical, and legal implications of the Human Genome Project. With its Science + Literacy for Health: Human Genome Project, AAAS used its existing network of adult education providers and volunteer science and health professionals to pursue the following overall objectives: (1) to develop new materials for adult literacy classes, including a high-interest reading book, a short video providing background information on genetics, a database of resources, and fact sheets to assist other organizations and researchers in preparing easy-to-read materials about the HGP, and (2) to develop and conduct a campaign to disseminate the materials to libraries and community organizations carrying out literacy programs throughout the United States. To introduce the materials to low-literate adults, workshops using the materials were conducted in Washington, DC, Baltimore, MD, Chicago, IL, Miami, FL, and Cleveland, OH. In 1997, thousands each of the book and video, both titled Your Genes, Your Choices, have been sent to literacy educators, community colleges, church groups, libraries, and other organizations around the country. In each workshop, a genetic counselor or other genetic professional was present to answer questions and provide insight into genetic research and issues. The entire book is also available on the Web at http://ehr.aaas.org/ehr/books/index.html. Our model for helping scientists communicate in simple language will has impact beyond classrooms and learning centers. Since not every low-literate adult is enrolled in a literacy class, we developed a model that reaches out to community groups providing health services. These groups have indicated that easy-to-read materials on genetics are not only desirable but necessary; indeed, the groups we worked with often received requests for information on heredity and genetics. Your Genes, Your Choices enables medical and scientific organizations to communicate more effectively with economically disadvantaged populations, which often include a large number of low-literate individuals. * 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 contract DE-FG02-95ER61988. The Arc's Human Genome Education Project Sharon Davis, Ph.D.; Leigh Ann Reynolds,
Project Associate
Text of Sharon Davis' talk is available. New genetic findings from the Human Genome Project (HGP) pose unique ethical questions and legal/social concerns to those with disabilities and their family members. Many disorders associated with the disability of mental retardation have genetic causes, with Down syndrome and fragile X syndrome being the most common. In an effort to begin addressing these complex issues, The Arc of the U.S. (the largest voluntary organization on mental retardation in the country with 140,000 members) developed a series of reports, fact sheets and a training package for use by the organization's leadership to educate members about these important and timely issues. The materials were distributed to all 1,100 chapters of The Arc and made available through the internet. Some topics covered include:
The aim of this educational effort is, first, to provide a basic understanding of genetic inheritance and mental retardation. Next, unique concerns people with mental retardation and their families may face in light of new genetic research are addressed. Finally, inherited syndromes associated with mental retardation are highlighted to provide a practical example of how someone with this disability is affected by the HGP and to report on the latest research in genetic therapy. The Arc's Human Genome Education Project: Examining Genetic Ethical, Legal and Social Issues is an interactive and comprehensive training package which includes a detailed script for the workshop leader, a pre and post-questionnaire to measure change in opinion and understanding of the issues, background information for the presenter, print copies of overheads, a project description to use in promoting the workshop, a 15 minute video and other handouts. The most important objective of the training (discussing highly complicated and sometimes controversial issues) is achieved through the use of case scenarios. Through this challenging exercise, members actively learn how difficult it can be making decisions regarding genetic testing, therapy and discrimination on behalf of themselves or their children who have disorders either caused by or associated with mental retardation. By simplifying medical terminology and concepts, identifying core issues most threatening to those with disabilities and utilizing practical case scenarios, members of The Arc are better equipped to make informed decisions and educated opinions on ethical, legal and social issues impacting the lives of people with mental retardation resulting from the HGP. Measuring the Effects of a Unique Law Limiting Employee Medical Records to Job-Related Matters Mark A. Rothstein, J.D., Steven G. Craig, Ph.D.,
Betsy D. Gelb, Ph.D.
Under the Americans with Disabilities Act, after a conditional offer of employment an employer is permitted to conduct medical examinations of unlimited scope and may require the release of all medical records in the possession of the individual's health care providers. Allowing unlimited access to personal medical records not only facilitates surreptitious discrimination, but it invades the privacy of individuals and discourages at-risk individuals from undergoing genetic testing in the clinical setting. Pursuant to a law enacted in 1983, Minnesota is the only state to restrict the scope of all medical inquiries by employers to matters that are strictly job-related and consistent with business necessity. If this law has had no adverse effects on employers or other parties, then it may serve as a model for protecting genetic privacy in the workplace. We are using the following three main methods to measure the effects of the law: (1) reviewing and analyzing all of the cases filed under this law in the last five years; (2) surveying human resource managers in Minnesota (using Ohio as a control state) to learn their opinions about limitations on the scope of preplacement medical examinations; and (3) doing an economic analysis in Minnesota (with Ohio as the control state) of workers' compensation claims rates, employee turnover rates, productivity rates, health insurance claims rates, and other data. The data collection phase is well underway and should be completed by the end of 1997. Analysis of the data will help determine whether this legislative approach is a viable alternative to current proposals for prohibiting genetic discrimination in employment. The Genetics Adjudication Resource Project Franklin M. Zweig, Ph.D., J.D. The Genetics Adjudication Resource Project (GARP) has been funded by the Ethical, Social and Legal Issues (ELSI) Program of the DOE Human Genome Project to provide foundation education for 1,000 judges of federal and state courts in genetics, molecular biology and biotechn- ology. The Project's over-arching objective is to familiarize judges, who have little scientific background, with the concepts, research findings, and vocabularly they are likely to encounter in civil lawsuits and criminal prosecutions. Expected evidence flows from parties' pleadings and from expert witness testimony. ELSI matters flow from the conferences' active, case-based, problem-solving curriculum. The project's operational objective is to provide judges with tools by means of which to exercise their gatekeeping duties for scientific evidence. Those duties include, but are not limited to, determination of the fitness of the evidence for presentation to juries. The Conference series was preceded by four preparatory "working conversations" ("WC's") intended to perfect a durable, effective, and adaptable educational technology template. One of the "WC's" was hosted by the Lawrence Livermore National Laboratory in November, 1996. The first large scale conference of 106 judges and 40 faculty was held in May, 1997 at Airlie House, Airlie, Virginia for judges of courts located in the Greater Washington, D. C. region. The Project has been approved for conduct of six conferences in 1997 and 1998. Included are the National Capital Area, New England, Chicago, and Mountain West regions, and two conferences scheduled for June 27-July 3 and August 1-6 at Orleans, Cape Cod. Three additional conference are on the drawing boards for the Mid-Atlantic region in 1998 and in 1999 for the Southeast regions, and for the California State Courts. The GARP has also produced a Handbook for Judges for Cases Involving Genetics, Molecular Biology and Biotechnology Evidence. Under production is a nine cassette videofilm primer. Another primer has been produced by EINSHAC within the courts' own publication system. The Judges' Journal, a quarterly published by the American Bar Association, produced a dedicated theme issue late Summer, 1997 entitled "Genetics in the Courtroom." This primer is divided into scientific and adjudication perspectives. Key to the GARP's conferencing success is the recruitment, training and deployment of science advisors. Scientists reside with the judges and the informal interaction is a key supportive device in making this unfamiliar subject material patent to lay judges. DOE scientists and ELSI personnel have been instrumental in this effort. GARP deploys one scientist for every four judicial participants. GARP has developed a training program for scientific faculty so that differences in communication content and style rooted in the judicial culture can be anticipated and managed. The training strategy is based upon the different professional paradigms (mental worlds unique to adjudication and to science) highlighted by the literature and experienced in the 1995 and 1996 WC's. Science advisors are now being sought for the 1998 and 1999 judicial conferences. Six hour training seminars will be scheduled conveniently. GARP promises an interesting experience with an avid group of learners whose day-to-day responsibilities can make important contributions to our society's adaptation to advances in human genetics. (DE-FG02-96ER62170, conducted by EINSHAC, the Einstein Institute for Science, Health and the Courts, Washington, D.C.) Upstream Patents and Downstream Products: A Tragedy of the Anticommons? Michael A. Heller & Rebecca S. Eisenberg1
In this article we propose a theory of anticommons property to explain how too many upstream intellectual property rights may lead to too few downstream products. Anticommons property may be understood as the mirror image of commons property. In the familiar tragedy of the commons, too many owners have the privilege to use scarce resources, and the property is prone to overuse. By contrast, in a tragedy of the anticommons, too many owners have the right to exclude others from using a scarce resource, and the resource is prone to underuse. Anticommons property may arise whenever governments define new property rights that are too fragmented. Empty storefronts in Moscow provide one stark example of this phenomenon. Transition regimes charged with privatization have endowed multiple owners with overlapping rights in each storefront, so no owner holds a useable bundle of rights to convey to an entrepreneur who wishes to set up shop. As a result, scarce property is wasted. Once an anticommons emerges, collecting rights into useable bundles can be brutal and slow. Like post-socialist transition regimes, intellectual property systems are constantly creating new property rights. An anticommons could arise if multiple owners obtain fragmented patent rights that are difficult to assemble into usable bundles. The anticommons model provides one way of understanding a widespread intuition that issuing patents on gene fragments makes little sense. Depending on their scope, patent rights in gene fragments could lead to the emergence of a genomic anticommons in which a product developer requiring use of a full-length gene or a set of polymorphic markers useful in diagnosing disease might be stymied by the costs of bundling licenses from many patent owners. Up to a point, privatization may enhance efficiency by spurring investment in upstream research. But privatization can go astray. When the legal system creates too many fragmented intellectual property rights, a tragedy of the anticommons could block the development of new pharmaceutical products. Supported by DOE Grant No. DE-FG02-94ER61792. The Science and Issues of Human DNA Polymorphisms David Micklos, Mark Bloom, Scott Bronson, and
John Kruper
This ELSI training 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. By targeting motivated biology faculty who currently perform student laboratories with viral and bacterial DNA, this program offers a cost-effective means to bring high school biology education up-to-the-minute with genomic biology. In October-November 1997, we are instructing the first of 12 workshops nationwide at Mt. Sinai School of Medicine (New York), Boston University School of Medicine (Massachusetts), and Canada College (California). The program is based on lab and computer technology, developed at the DNA Learning Center and the University of Chicago, that makes human DNA "fingerprinting" by polymerase chain reaction (PCR) accessible and affordable for high school use. Program participants learn simplified lab techniques for amplifying two types of chromosomal polymorphisms - an Alu insertion (TPA-25) and a VNTR (D1S80). 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. Workshop participants amplify their own polymorphisms from DNA obtained from rapid preparations of buccal cells and hair sheaths. The loci are amplified using rapid cycling profiles and analyzed on agarose gels. To further reduce the cost of experiments, we have developed the Biogenerator, the first inexpensive ($900) thermal cycler licensed for precollege use. This "Rube Goldberg" thermal cycler articulates with a Macintosh computer and gives results comparable to commercial machines. Using a facility at our WWW site (http://darwin.cshl.org), the Alu insertion data are further used as an entree into human population genetics and genome diversity. The "Student Allele Database" has forms for entering student-generated data, as well as archival data from populations around the world. Several statistical functions are available: testing Hardy-Weinberg equilibrium within a single population, measuring genetic distance between two populations, and comparing two populations using contingency chi-square. A "Monte Carlo" generator shows the effect of genetic drift in small populations. During the summer, we developed reliable methods for generating mitochondrial DNA sequence from buccal and hair samples. We hope to introduce this technology at as many DOE workshop sites as possible. Workshop participants can then use their own mitochondrial DNA sequence as an entree to modern bioinformatics. Our WWW site has a step-by-step template for analyzing mitochndrial DNA sequence - including similarity searches, multiple sequence alignments, a recreation of the Neandertal DNA analysis, and the identification of the Romanov family remains. Ultimately, we envision students preamplifying their mitochondrial DNAs and performing dye terminator reactions at their own schools. The ready-to-sequence DNAs would then be sent to regional centers for sequencing and the results would be posted by Internet. Thus, we are striving to develop a robust and accurate analog of human genome research that allows students to use their own chromosomal and mitochondrial DNA polymorphisms as the basis of explorations into contemporary genomic biology. Implications of the Geneticization of Health Care for Primary Care Practitioners* Mary B. Mahowald, John Lantos, Mira Lessick,
Robert Moss, Lainie Friedman Ross, Greg Sachs,
Marion Verp
Phase I (fall 1995): Generic topics in genetics in primary care presented to broad audience Ten sessions: Goals, methods, & achievements of HGP; Typology of genetic conditions; Scientific, clinical, ethical, and legal aspects of gene therapy; Concepts of disease, Genetic Disabilities; Gender and socio-economic differences; Cultural and ethnic differences; Directive or nondirective genetic counseling. Transcripts of presentations prepared for revision by authors Phase II (Jan.-Mar. 1996): Grand rounds in specific areas of primary care: Topic: What every general practitioner should know about the new genetics
Transcripts of presentations prepared for revision by authors. Bibliography developed on generic issues in genetics, and issues specific to areas of primary care Phase III (Apr., 1996) Policy issues presented by Sherman Elias and George Annas Syllabi and chapters developed by each primary care team + policy team Phase IV (Oct.-Dec. 1996) Series on genetics in primary care for Clinical Ethics fellows and Robert Wood Johnson Clinical Scholars, presented by each team of primary caregivers (Co-PI + fellow) Teaching sessions for faculty, house staff, students led by Co-PIs + fellows Phase V (April 1997) National Conference on The New Genetics in Primary Care, keynoted by Victor McKusick, with CME/CNE workshops for primary caregivers Outreach (Summer 1997 and beyond) CME conference, AMA planning for conference on genetics in primary care, Teaching sessions on genetics for new clinical ethics fellows, Preparation of materials for publication * Supported by a grant from the Director, Office of Energy Research, Office of Health and Environmental Research, U.S. Department of Energy, DE-FG02-95ER61990 Confidentiality Concerns Raised by DNA-Based Tests in the Market-Driven Managed Care Setting J.S. Kotval, D. Dewar, and S. Brynildsen
Previous policies to protect the confidentiality of DNA-based tests have centered on protecting the dispersion of genetic information. In general, the goal has been to keep information from passing outside a health care institution to third parties that might discriminate against patients in employment, access to health care and other areas of civic life. We are focusing our attention on the threats to patient welfare created within the setting of the market-driven managed care organization (MCO). This setting presents unique ethical dilemmas, since physicians (and, often, personnel at testing laboratories) are employees of the MCO, and since the payor and provider functions are contained within the same entity. In this context, the institutional imperative of cost savings in order to capture market share could lead to discrimination in health care access (either through outright denial of enrollment or prohibitive premiums) if DNA-based tests reveal the likelihood of future high-cost illnesses. Our group -- which spans the disciplines of genetics, medical ethics, health economics and the law -- seeks to (i) formulate an ethical construct for medical confidentiality with a view to defining its core ethical functions and its limitations in the changing health care system; (ii) examine the practices and institutional imperatives of market-driven MCOs to understand the context in which the DNA-based tests would be used and to assess the cost of confidentiality measures; (iii) identify gaps in the policy framework that could allow misuse of confidential medical information within the MCO; and (iv) make recommendations to remediate these gaps in policy in a manner that is applicable and practical to MCOs. Progress to date includes a preliminary formulation of confidentiality concerns raised in the market-driven managed care setting and the design of a survey instrument to assess the institutional and marketing practices of MCOs. We are paying specific attention to the current practices of MCOs that encroach on the core ethical concerns of medical confidentiality. Getting the Word Out on the Human Genome Project: A Course for Physicians Sara L. Tobin, Ph.D., M.S.W.* and Ann
Boughton#
The knowledge gained from the Human Genome Project has the potential to correlate molecular diagnosis with effective treatments and to lead the way to novel medical interventions. The molecular tools that have emerged from genetic studies are changing the face of medical practice and inaugurating a transitional period that will be uncomfortable for both physicians and the public. There will be marketing pressures, health care industry changes, uneven supporting resources, variable training of physicians, and limited public understanding. We have designed an interactive, multimedia CD-ROM course to ease this transition for the majority of physicians, who have received little or no training in clinical applications of molecular genetics because the field has developed so recently. The courseware, entitled "The New Genetics: Courseware for Physicians. Molecular Concepts, Applications, and Implications," will provide accredited continuing education for practicing physicians through the Stanford University Office of Postgraduate Medical Education. It is important for physicians to understand the modern clinical applications of molecular genetics for several reasons. First, physicians will be explaining genetic tests and their implications to their patients, selecting specific tests, and interpreting the results. Second, physicians must be able to work productively with other health professionals, including genetic counselors and psychologists. Third, standards of practice that will govern the application of molecular genetic diagnosis to patient care are currently under development, and physicians need to contribute to this evolution. Fourth, a lack of training in modern genetics prevents many physicians from understanding much current medical research. Finally, physicians with training in molecular medical genetics can serve as informed resource persons and enhance the level of public understanding of and appreciation for the Human Genome Project in their communities. The CD format confers multiple advantages for continuing medical education. The delivery of course materials via CD-ROM frees the physician from a presentation schedule and does not require travel and time away from a busy practice. CD's function as an improved teaching resource because of their interactivity and multimedia capability. We have designed a streamlined, accessible navigational system tailored to the needs of the busy (and possibly computer-naive) physician. Engaging interactive features and animations have been created to convey complex concepts. The course content is supervised by a Board of Advisors. While the Internet is currently too slow to serve as the primary delivery system, we are programming the CD to accept updates and supplements from the Internet or from a subscription floppy. The development of a prototype version of the courseware is funded by the Department of Energy, and our current draft version of the courseware will be demonstrated at the Workshop. Electronic Scholarly Publishing: Foundations of Classical Genetics Robert J. Robbins
With the continuing success of the Human Genome Project (HGP), more and more people are interested in the project and wish to understand 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 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. Interest, however, is not enough. Real understanding of the results of HGP research requires some familiarity with basic genetics notions. In particular, most of the methods and findings of molecular genetics are essentially inaccessible to those without appropriate training. On the other hand, both the methods and results of early work in classical genetics can be appreciated by virtually anyone: cross a black mouse with a white mouse, count the progeny of different colors, then try to figure out what might be going on. A familiarity with the basic notions of classical genetics is essential for a simple appreciation of the significance of the HGP, and a more detailed knowledge of classical genetics (including an appreciation of the question, What is the chemical nature of the gene?), can provide a basis for the genuine understanding of HGP findings. Gaining this basic understanding of classical genetics is becoming more difficult, even for science majors. The runaway success of modern molecular genetics is driving the detailed presentation of classical genetics out of most text books, and the original literature is increasingly difficult to obtain. To address these problems, we have established an electronic educational resource at which classic literature (both papers and monographs), that established the foundations of modern genetics, is being republished on-line, freely accessible to all. Works are being made available in a variety of formats including simple HTML, Adobe PDF files containing high-quality typeset republications, and Adobe PDF files containing image facsimiles of the original publication. The fundamental work of Gregor Mendel, for example, is available as both a typeset republication and as an image facsimile of the original 1865 publication. Funding for the project was received earlier this year, and work thus far has involved (1) moving the original prototype site from Johns Hopkins to Seattle, (2) redesigning the site to make it easier to understand and use, and especially to prepare it to handle more data and more traffic, (3) establishing high-efficiency systems for converting paper publications into electronic form, and (4) acquiring material for republication. When full-scale publication begins in January, we anticipate publishing the equivalent of a 25-page paper every day. The Community College Initative Sylvia J. Spengler* and Laurel Egenberger**
The Community College Initiative prepares community college students for work in biotechnology. A combined effort of Lawrence Berkeley National Laboratory (LBNL) and the California Community Colleges, we aim to develop mechanisms to encourage students to pursue science studies, to participate in forefront laboratory research, and to gain work experience. The initiative is structured to upgrade the skills of students and their instructors through four components. Summer Student Workshops: Four weeks summer residential programs for students who have completed the first year of the biotechnology academic program. Ethical, legal and social concerns are integrated into the laboratory exercises and students learn to identify commonly shared values of the scientific community as well as increase their understanding of issues of personal and public concern. In the two year period of the grant, we have involved over twenty students. Students in the second summer have had laboratory interships. Teacher Workshop Training: Seminars for biotechnology instructors to improve, upgrade, and update their understanding of current technology and laboratory practices, with emphasis on curriculum development in current topics in ethical, legal, and social issues in science. These workshops have involved the students as well. Sabbatical Fellowships: For community college instructors to provide investigative and field experience in research laboratories. During the fellowship, teachers also assist in development of student summer research activities. This work was supported by the Director, Office of Energy Research, Office of Biological and Environmental Research, Human Genome Program, ELSI program, of the U.S. Department of Energy under Contract No. DE-AC03- 76SF00098. The Hispanic Educational Genome Project Margaret C. Jefferson, Mary Ann Sesma, and
Patricia Ordonez
The primary objectives of this grant are to develop, implement, and distribute culturally competent, linguistically appropriate, and relevant curricula that leads to Hispanic student and family interactions regarding the science, ethical, legal, and social issues of the Human Genome Project. By opening up channels of familial dialogue between parents and their high school students, entire families can be exposed to genetic health and educational information and opportunities. In addition, greater interaction is anticipated between students and teachers, and parents and teachers. Each participating high school has taken different approaches to exposing students and parents to the science and ELSI of HGP. Some schools have divided students into research teams from various levels of biology curricula with each team analyzing small segments of their own DNA. Other schools have science classes following the BSCS HGP-ELSI curricula or components of the University of Washington High School Human Genome Program. Still other schools have utilized the materials that were developed by various Los Angeles Unified School District science teachers. Several other classes (e.g., Spanish classes, English classes, Journalism classes, and Social Science classes) at each participating school have developed ELSI newsletters for distribution to the parents. In addition, we have math and computer science classes from one of the schools helping in the construction of our web page. Each participating school is also expected to have parent focus groups which usually meet once per month in the evening to discuss various genetic health issues and implications of HGP. Genes, Environment, and Human Behavior: Materials for High School Biology Joseph D. McInerney and Michael J. Dougherty
The Biological Sciences Curriculum Study (BSCS) has begun the development of an instructional module on genetics and human behavior for use in introductory high school biology. 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 project employs the process of curriculum development that BSCS has refined continually since the inception of the organization in 1958. In addition, development of the module is drawing upon the experience BSCS acquired during the development, distribution, and implementation of three genome-related instructional modules between 1991 and 1996. This experience includes writing conferences, pilot and field testing of draft materials, and periodic reviews of progress by members of the education committees of the National Society of Genetic Counselors, the American Society of Human Genetics, the Council of Regional Networks for Genetic Services, and other independent experts in genetics. In late July 1997, BSCS completed the first of two writing conferences during which experts in behavioral and medical genetics, ethics, and high school biology teaching produced a draft module containing instructional activities for students and extensive background materials for teachers. The draft instructional activities are designed to help students move through the following ideas: 1. variation in behavior exists in populations;
To test the effectiveness of the draft module in helping students understand how genes and environment influence human behavior, BSCS pilot tested several activities in October. Following analysis of these data, BSCS will refine the materials, conduct a complete field test, convene a second writing conference, produce the final module, and distribute the module free of charge to all interested high school biology teachers. Microbial Literacy Collaborative Cynthia Needham
The Microbial Literacy Collaborative is a partnership of organizations dedicated to enhancing public understanding of microorganisms and the roles they play in sustaining the planet. Partners include the American Society for Microbiology, Baker & Simon, Oregon Public Broadcasting, the Association of Science and Technology Centers, and the American Association for the Advancement of Science. The MLC's initiatives include
The scientific messages delivered through these projects will promote a balanced view of our interactions with our microbial partners on the planet. One of the MLC's primary goals is to dispel public anxiety about microorganisms which has been created through intensive media focus on microbes as disease agents. Viewers and participants will be introduced to broad concepts such as
The three initiatives of the MLC received a guarantee for complete funding in May, 1997. The intellectual framework for the science documentary was established at a seminal meeting of the Science Advisory Group held in Woods Hole, MA, three years prior to funding. The production staff officially began work Oct. 6 and are presently participating in "Microbiology school" and beginning to formulate story lines for the four part series to reflect the scientific content. Planning for the Annenberg sponsored telecourse began mid-summer, with a meeting of the Science Education Advisory group at OPB. The group is nearing completion of curricular content and learning objectives for an accredited college level telecourse, both of which will be finalized at an upcoming meeting in October. The Advisory Group to the informal set of initiatives met in September for a 3 day planning meeting to discuss the hands on activities that will be developed to accompany each of their dissemination plans. The official kickoff meeting for the MLC will take place at the end of the month at Mt. Hood, Oregon, where all parties will come together to validate timelines and recognize who the responsible parties are for various aspects of each of the three initiatives. High School Students as
Partners in
Sequencing the Human Genome
The High School Human Genome Program (HSHGP) encourages high school students to think constructively about the scientific and ethical issues of genomic research by enabling them to participate in both. This program supports many of the teaching objectives presented in the National Science Education Standards (1996), including meeting the content standards for genetics education, teaching science through inquiry and developing a learning community of teachers and scientists to promote better science education. Participating students learn about many career options in science through discussions with scientist mentors who assist during classroom experiments, and the lab experiences help to prepare them for future employment. A. Program modules. The DNA Synthesis experiment is an introductory experiment that helps students learn about DNA structure and replication and develop their laboratory skills. During the DNA Sequencing experiment, students sequence a region of chromosome 5 that is involved in a hereditary form of deafness. This project is made possible through a collaboration with Eric Lynch and Mary-Claire King from the Departments of Genetics and Medicine at the University of Washington. The Ethics unit, which focuses on presymptomatic testing for Huntington's disease, helps students develop the skills to define ethical issues, ask and research relevant questions about a particular topic and make justifiable ethical decisions. The module was developed by Sharon Durfy and Robert Hansen from the UW Department of Medical History and Ethics. B. Teacher Preparation and Classroom Implementation. Local, regional and national teachers attend a week-long summer workshop, which provides training in program modules, informal seminars and discussions of relevant topics. C. Equipment Kit Loans. During the academic year, local teachers are provided with the necessary equipment, supplies and technical assistance to carry out the classroom experiments. Teachers from distant sites receive DNA templates and primers and ongoing technical advice. This program is currently serving 32 high school teachers at fifteen schools in Washington state and 13 other teachers nationally. D. The HSHGP web-site (http://hshgp.genome.washington.edu). This site is intended as a resource for teachers and students everywhere and contains the following: Program modules. These are available on-line or in a downloadable version. On-line DNA assembly and data analysis. This tutorial enables students to carry out the assembly of the sequencing data from the web-site, using the demonstration version of the DNA assembly program, Sequencher and a folder of student data files. Virtual DNA sequencing. This tutorial enables classrooms that are unable to do the sequencing experiment to do many aspects of the sequencing process by providing scans of student sequencing ladders and highlighting the portions of our teaching modules that can be used to simulate DNA sequencing. Future tutorials on the Web-site:
Exploring ethical issues related to genomic research. We plan to develop additional modules that emphasize how the decision making process can be used to examine any ethical issue. Communication among program participants. Discussion boards will be set up so that participants can discuss technical problems and solutions, ask research questions and exchange classroom tips. E. Program Evaluation: Preliminary results of program evaluation will be discussed.
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 studentsto 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 now creating 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 assembling and reviewing for usefulness materials from other publishers and by continuing the development of new materials by PBA to create a comprehensive supplemental materials package that provides resources in several different media. Second, by running 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. This project is targeted at middle and high school teachers and students for several reasons - most of the biological information studied and learned in the United States occurs at this level, students are generally very interested in biology and science at these levels, and teachers can greatly assist students in considering this material, but need more support in teaching about the HGP and ELSI. Phase I Materials are expected to include:
Phase II Materials are expected to include:
Human Genome Teacher Networking Project Debra L. Collins, M.S., and Rebecca Knetter,
Ph.D.
Families, health care providers, and the general public are all increasingly aware of the human genome project discoveries. However, many do not have a background on basic genetic information, and therefore are not aware of, or prepared for, the ethical, legal, and social implications of this new technology and the applications. Our program helps prepare high school students for their future through updated information and resources from their biology teachers. Each teacher in this project spent time in educational activities over a two-year period, learning about updated information through two one-week workshops, preparing updated lesson plans, presenting peer teacher programs, and networking with other teachers, genetic professionals, and ELSI experts. During 1993-1997, 177 teachers attended a series of Human Genome Teacher Networking education workshops which addressed the applications of Human Genome Project technology, with a focus on ethical, legal, and social implications (ELSI). After the teachers attended summer workshops, they used new materials with students, then conducted peer and community education programs, and contacted genetic and ELSI experts to enhance their classroom teaching. The networks which developed between teachers, liaisons with genetic professionals, peer teacher programs, and on-line computer communications helped educators and their students obtain current human genetics information. We analyzed the improvement in teacher confidence and preparedness and measured student achievement as a result of the summer workshops. Following the workshops, teachers were prepared and confident teaching complex genome technology and applications (p< .05). They acquired new information to expand their knowledge of human genetics and integrate the complex information into existing science curricula. Some teachers developed new school courses. Student achievement was significantly increased (p<.05) due to teacher attendance at the workshops. The teachers gained a new awareness of the scientific as well as the personal aspects of the genome information. Participants were 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 than of comparable students whose teachers did not attend the workshop. Teachers, as part of their biology curricula, can integrate genome project concepts, and help students understand the ELSI issues which will be important in their future. Teachers are enthusiastic about education workshops, they increase the amount of curricula time devoted to genome/ ELSI projects, and can present information at an appropriate pace for students. The studentis science literacy is increased on timely topics, and they have knowledge of internet and other resources to answer new questions, not available in current published textbooks. Workshop resource materials, lesson plans, the mentor network, and teachers who agreed to have their names listed on the internet are available though the web site for this project: http://www.kumc.edu/gec (Genetics Education Center). Links are provided to other ELSI sites, career information, and other genetic resources. Funded by DOE #DE-FG02-92ER61392
Noel Schwerin
A two-hour national PBS special (aired September 16, 1997), A Question of Genes looks for the first time at the ethical, social and legal implications of genetic testing. A Question of Genes enters the lives of a few individuals and families as they confront genetic risks for conditions like heart disease, Alzheimer's, breast cancer and genetic birth defects. A Question of Genes explores the profound challenges genetic information makes to a person's sense of self, family and future. Closely observing regular people over several years, A Question of Genes takes us inside the decisions and dilemmas of a range of personalities and perspectives: a woman who had a preventive mastectomy after losing three sisters to breast cancer tries to make sense of her just-discovered results; a poor African-American mother struggles to know more about the genetic legacy to her daughter; a physician who administers genetic tests wrestles with ethical dilemmas about his patients' privacy and rights; a pregnant woman makes startling decisions about the fate of her unborn children. In seven stories told by the participants themselves, A Question of Genes captures both the profound emotional drama as well as the enormous social, legal and ethical implications of the powerful new technology of genetic testing. A Question of Genes was produced and directed by Noel Schwerin for the Chedd/Angier Production Company and Oregon Public Broadcasting.
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. Program content is guided by a distinguished body of advisors and will include the voices of prominent genetic researchers, people affected by advances in the clinical application of genetic medicine, members of the biotech industry, and others from related fields. They will 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 will target educators, scientists, and involved professionals. Ancillary educational materials will be distributed in paper and digital form through over collaborative organizations and in fulfillment of listener requests. 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 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. A live, two-hour call-in show will cover the broad scope of human genetic research and its applications. It will include a discussion with experts, and a chance for listeners at home to make comments and ask questions. Nine one-hour documentaries will provide the basic science of DNA, genes and heredity, while illustrating the accompanying social and ethical issues. "DNA and the Law," for example, reviews the scientific basis for genetic fingerprinting and looks at cases of alleged genetic discrimination by insurance companies, employers and others. "Gene Therapy: Medicine for Our Genes" takes on popular descriptions of genetic therapy, derived from stories like Jurassic Park, and attempts to help us realistically understand the science, as well as its promise, limits, and social implications. Other shows include "The Commercialization of Genetics," "Prenatal Genetic Testing: Better Babies Through Science," and "Genetic Evolution, Diversity and Kinship." *Supported by ELSI grant DE-FG03-95ER62003 from the Office of Health and Environmental Research of the U.S. Department of Energy. Human Genome Project Education & Outreach Component Molly Multedo
Self Reliance Foundation (SRF), in collaboration with Hispanic Radio Network (HRN) and the National Center for Genome Resources (NCGR) has developed Spanish radio programming and outreach services which will help inform Hispanics on the ethical, legal, and social issues related to the Human Genome Project and motivate them to access the resources available for further education on these issues. Funding by DOE-ELSI supports the production of 50 new episodes of "Buscando la Belleza" (BB) for broadcast over the period of two years; extensive, national outreach and referral services and a linked Web site. |