PGES Fellows
Applying for a PGES Fellowship
About Our PGES Fellows
1999-2000 PGES Fellows
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1998-99 PGES Fellows
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1997-98 PGES Fellows
Timothy Caulfield, LL.M. , is the Research Director of the Health Law Institute , and Assistant Professor of Law at the University of Alberta, Canada. His research interests are predominantly related to legal and ethical issues associated with emerging genetic services and technologies. Mr. Caulfield is the recipient of an Alberta Heritage Foundation for Medical Research Population Health Investigator Award for a project entitled, "Legal Issues in the Allocation and Utilization of Genetic Services: A Model for the Analysis of Health Care Policies and Reform".
Mr. Caulfield used his 4-month fellowship, from July - October, 1997, to focus on several major areas: (1) The Commercialization of Human Genetics; (2) Pediatric Genetics: An Evolving Legal and Ethical Framework (an ongoing research project with Bartha Maria Knoppers, Faculty of Law, University of Montreal); (3) The Family, Genetics and the Law (an ongoing research project with Bartha Maria Knoppers and Christine Davies, Faculty of Law, University of Alberta); (4) Fiduciary Law and the Allocation of Health Care Resources (an ongoing research project with Moe Litman, Faculty of Law, University of Alberta); and (5) Attitudes Regarding the Notification of Individuals Exposed to CJD Associated Blood Products: A Survey of Albertans.
As a member of the Alzheimer Working Group, he wrote a chapter on "Testing Minors Involved in High Contact Sports for the APOE4 Genotype: A Discussion of Legal Issues", and gave a presentation on the same topics at the PGES conference, "Genetic Testing and Alzheimer Disease: Has the Time Come?" on October 25, 1997. He also presented PGESÕ Alzheimer work for Medical Grand Rounds at the University of Alberta in January 1998.
Mr. Caulfield had many media interviews and speaking engagements during his fellowship. He is currently organizing and will chair the second international conference on DNA sampling, " The Commercialization of Genetic Research: Ethical, Legal and Policy Issues ", which will be held September 10-13, 1998 in Edmonton, Alberta, Canada. PGES is a co-sponsor of this event.
R. Alta Charo, J.D. , is an Associate Professor of Law and Medical Ethics at the University of Wisconsin Law and Medical Schools. She is a member of the National Bioethics Advisory Commission , appointed by President Clinton. She is also a Fellow at The Hastings Center, a member of the Board of Directors of the American Association of Bioethics , and Policy Review Editor of the Journal of Law, Medicine & Ethics . Ms. Charo is interested in behavioral genetics, and the variety of settings in which courts and legislatures have confronted what appear to be biological "truths" that must be addressed in the context of public policy. During her fellowship, she will examine how the law uses perceptions of biological truths in the development of categories -- such as "reasonable," "in the heat of passion," and "immutable" -- and how genetics may shape those perceptions.
Marie Hirtle, LL.M. , was a member of the Faculty of Law at the University of Montreal in Quebec, and a Research Associate in the Law, Biotechnologies and Society Program of the Public Law Research Centre. She has been actively involved in multi-disciplinary work, principally conducted from the perspective of international comparative law, ethics and policy. During her 4-month fellowship, Ms. Hirtle focused on issues raised by the commercial availability of genetic tests, comparing the situation in the United States and in Canada. She is currently preparing a paper on the regulation of genetic tests in Canada that will discuss how commercialization issues could play out in a publicly funded health care system.
In addition to this work, Ms. Hirtle also prepared and completed several papers that have been submitted or accepted for publication. She drafted the English version of a report that was prepared in French for the Group of Advisors on the Ethics of Biotechnology of the European Commission, entitled "A Comparative Study of the Ethical and Legal Aspects Raised by Human Cloning". This paper has been accepted for publication as a book chapter in Ethical Issues in Human Genetics (forthcoming). She also co-authored the following papers: "Control of DNA Samples and Information" (accepted for publication in Genomics ), and "Étude comparée des mécanismes élaborés à lÕétranger pour examiner les enjeux éthiques et sociaux des biotechnologies", a report prepared for the Office of Consumer Affairs, Industry Canada, 1997.
Ms. Hirtle is currently Research Director for the Genetics and Society Project of the Centre de recherche en droit public, Université de Montréal. The goal of this project is to provide policymakers with an ongoing and systematic international and comparative analysis and reflection on policy option and their implications with regard to human genetics from legal, social, and ethical perspectives. In addition, she is pursuing consultation work on a number of broader health law and policy issues.
Anne Moyer, Ph.D. ,received her Ph.D. in Social and Health Psychology from Yale University and completed a post-doctoral fellowship in Psychology and Medicine at the University of California, San Francisco. Dr. MoyerÕs primary area of interest concerns issues in women's health, and she taught a course entitled "The Psychology of Women's Health" in the Continuing Studies Program at Stanford. During her year-long fellowship, partially funded by the Walter and Elise Haas Fund, Dr. Moyer will act as the Project Director for two studies which continue PGESÕ work in breast cancer genetics: "Social/Ethical Impact of Presymptomatic DNA Testing for BRCA1-2", funded by the Kaiser Foundation Research Institute, and "A Pilot Study of Social and Ethical Issues Confronting Families Enrolled an a Family Registry for Breast Cancer", funded by the National Cancer Institute / Northern California Cancer Center.
In addition to her genetics-related activities, Dr. Moyer co-authored an article on "Challenges Facing Female Doctoral Students and Recent Graduates", which has been submitted for publication. She was an ad hoc reviewer for Women's Health: Research on Gender, Behavior, and Policy , and is a consultant on a pilot project funded by the California Breast Cancer Research Program, "Efficacy of a Retreat for Low-Income Women with Breast Cancer".
Rachel Cohon, Ph.D. is an Assistant Professor of Philosophy at Stanford University. As a PGES Faculty Fellow, Dr. Cohon will bring a philosophical analysis to the issues raised by genetic technology and its impact on society, particularly individual autonomy. She will investigate how transformations in molecular genetics affect concepts of personal identity, health and illness.
Margaret Eaton, Pharm.D., J.D. , was formerly Associate University Counsel (medical and health law) in the Office of General Counsel at Stanford University, and Clinical Risk Management and Legal Counsel at the Stanford University Medical Center. She continues as a member of the Stanford Health Services (SHS) Ethics Committee, the joint SHS-Packard Palliative Care Committee, and the SHS Physician's Assisted Suicide Task Force.
During her year-long fellowship, Dr. EatonÕs major area of focus will be the development of a book on ethical, legal, and social issues related to the genomics activities of pharmaceutical and biotechnology industries. To that end, she is currently researching the history of the pharmaceutical industry and its regulation, the genesis and continuing purposes for regulation of this industry, and examples of corporate ethical lapses and their consequences. She has interviewed biotechnology industry executives, leaders from industry organizations, personnel from business ethics organizations, science reporters, and biotechnology industry analysts. She also attended a course on business ethics at the Stanford University Graduate School of Business, and various lectures at the School of Medicine on biotechnology issues.
Dr. Eaton has undertaken various teaching activities, and participated in several industry and professional meetings during her fellowship. She participated in the later phases of the Alzheimer Working Group, and will be an active participant in the Individualizing Medicine project.
1996-97 PGES Fellows
Jonathan Kaplan , Ph.D. , started his year-long PGES fellowship after completing his Ph.D. in Philosophy (specializing in the Philosophy of Biology and Political Philosophy) at Stanford University in the spring of 1996. He has been involved in both the Breast Cancer and the Alzheimer Working Groups. In the former, he worked on notions of privacy and informed consent within the context of genetic testing, and the cultural background of decision making (especially with respect to predictive testing). In the Alzheimer Working Group, he concentrated on issues of probabilistic risk assessment for late-onset spectrum diseases with several low-penetrance genes.
In addition to these Working Group activities, Dr. Kaplan co-wrote an article on the possible interpretations of the concept of broad-sense heritability, which is currently under review. Contract negotiations for his book, Biology, Society, and Environment , are ongoing. He taught two courses in the Philosophy Department during his fellowship, one on the Philosophy of Biology, and the other on the later work of Ludwig Wittgenstein.
Dr. Kaplan is currently a lecturer in the Cultures, Ideas, and Values Program at Stanford. He has accepted a tenure-track position starting in the fall of 1998 in the Philosophy Department at the University of Tennessee in Knoxville, where he will working in their Philosophy of Biology and Biomedical Ethics programs.
Susan Kelly, Ph.D ., received her Ph.D. in medical sociology from the University of California, San Francisco. Her areas of research interest are the social, cultural, ethical, and policy implications of medical innovations. With funding from the National Institute of Child Health and Human Development, she completed a postdoctoral research project at the Stanford Center for Biomedical Ethics on "Prenatal Diagnosis Using Fetal Cells from Maternal Blood". Dr. Kelly also co-authored article on "Understanding The Practice Of Ethics Consultation: Results Of An Ethnographic Multi-Site Study", which was published in the Journal of Clinical Ethics . She also wrote an book chapter with Barbara Koenig, titled "Rescue Technologies Following High Dose Chemotherapy For Breast Cancer: How Social Context Shapes The Assessment Of Innovative, Aggressive, And Life-Saving Medical Technologies", which will appear in the edited volume, Getting Doctors to Listen: Ethics and Outcomes Data in Context .
With additional partial funding from PGES, Dr. Kelly participated in the Breast Cancer and Alzheimer Working Groups. She contributed to both white paper reports, authoring a chapter on "Social and Ethical Issues in Predictive Testing for Breast Cancer", and co-authoring a chapter on "The Social Construction of Alzheimer Disease". Dr. Kelly gave several genetics-related presentations to professional and community groups.
Dr. Kelly is now an assistant professor of sociology (medical) and affiliated faculty of the Center for Genetics and Molecular Medicine at the University of Louisville in Kentucky. Her role is to establish research and curricula on the ethical, legal, and social implications of genetics. She also teaches Sociology of Women's Health and Medical Sociology, and is on the faculty of the Women's Studies program.
Howard Klepper, J.D., Ph.D. , was an assistant professor of philosophy at Loyola University in Chicago. Dr. Klepper used his 9-month fellowship to research and draft a lengthy study on "Genetics, Justice, and Insurance," which he expects to submit to a journal for publication. The paper concerns the gathering and use of genetic information by health insurance and managed care industries. He addresses what justice requires of a health insurance system in light of the predictive potential of genetic information, and how such a system of health insurance may be implemented. Dr. Klepper also published an article on "Intimacy and Parental Authority in the Philosophy of Ferdinand Schoeman" in the International Journal of Applied Philosophy , and on "Treating The Patient To Benefit Others", in the Cambridge Quarterly of Health Care Ethics .
Dr. Klepper was a member of the Alzheimer Working Group, where he was a co-leader of the Patient / Family Subgroup. He wrote a chapter on "Personhood, Personal Identity, Advance Directives, and Genetic Testing for Alzheimer Disease". He assisted in the organization of the PGES Works-in-Progress seminars, and with additional funding from the Ethics in Society Program, taught a medical ethics course with a special focus on genetics issues.
Alan Stockdale, Ph.D., began his PGES fellowship in the fall of 1996, and shortly thereafter completed his Ph.D. in Cultural Anthropology at Brandeis University. His thesis dealt with consumer coping strategies in the context of the development of new molecular therapeutics. Dr. Stockdale used his year-long fellowship to extend his study of the cultural dynamics surrounding cystic fibrosis care and research in the wake of the discovery of the CFTR gene, as well as to examine the similarities and differences in the networks of relations tied to other genetic diseases. He interviewed people involved in gene therapy trials at Stanford, a local consumer group called CFRI, and others. He worked with the International Adult Cystic Fibrosis Association on an international survey of patient/family attitudes toward and knowledge of CF gene therapy. He is re-working his thesis into a book and also publishing several papers based on his CF research.
Dr. Stockdale participated in the Alzheimer Working Group, for which he authored a chapter on "Public Understanding of Alzheimer Genetics". He also organized the social/ethical component of a scientific gene therapy conference held in Paris in September 1997. He worked with researchers at the Ecole des Mines de Paris on a conference session and possible collaboration on a cross-cultural study of the relations between charitable foundations and molecular research programs. Dr. Stockdale is currently working at the Center for Applied Ethics at the Education Development Center in Newton, Massachusetts.
Sara L. Tobin, Ph.D., M.S.W. , a molecular geneticist and holder of a Master's degree in Social Work, was a PGES Fellow from July 1996 through December 1997. She has since been appointed a Senior Research Scholar in the Stanford Center for Biomedical Ethics, in order to continue her work as Principal Investigator of " Getting the Word Out on the Human Genome Project: A Course for Physicians ". The aim of this project is to produce a multi-media, interactive CD-ROM for the continuing education of physicians. It was featured in a recent article in JAMA , "As Discoveries Unfold, a New Urgency to Bring Genetic Literacy to Physicians". The prototype for the CD-ROM was funded by the Department of Energy, ELSI Program; funding for the final version has also been granted by the DOE, and is under review by the National Institutes of Health.
Dr. Tobin was a member of the Breast Cancer Working Group Member, for which she co-wrote a white paper chapter on "The Genetics of Cancer". As a member of the Alzheimer Working Group, she coordinated and edited the chapters from the Background Subgroup, authored a chapter on "Genetic Testing for Alzheimer Disease", and co-authored a chapter on "Social Consequences of Alzheimer Disease". She moderated a panel on special issues at the PGES conference, "Genetic Testing and Alzheimer Disease: Has the Time Come?" on October 25, 1997.
During her fellowship, Dr. Tobin gave numerous presentations at academic, professional, and community meetings. In addition, she supervised two Stanford undergraduate interns from the Human Biology Program, and co-authored the several scientific papers.
1995-96 PGES Fellows
Diane Beeson, Ph.D. , one of the first social scientists to study medical genetics, has been an active participant in the PGES Working Group. While on partial leave from California State University, Hayward, Dr. Beeson developed an innovative strategy for incorporating the voices and experiences of women affected by familial breast cancer into the Working Group's policy report.
Monica Casper, Ph.D. , was a PGES fellow from September 1995 - September 1996. She participated in the Breast Cancer Working Group, led the "Implementation and Follow-Up" subgroup, and authored a chapter of the white paper. In addition, Dr. Casper assisted in organizing a pilot study of the impact of genetic testing on members of families considered at high risk for developing breast or ovarian cancer. She co-authored papers entitled "Parental Rights At The Birth Of A Near-Viable Infant: Conflicting Perspectives" (submitted to OB-GYN ), and "Fetal Reduction: The Ultimate Elective Surgery" (accepted by Journal of Contemporary Health Law and Policy for Spring 1997). Dr. Casper also revised the "Reproductive Ethics" chapter in Fletcher et al's Introduction to Clinical Ethics . She presented a paper at the San Francisco IAB/FAB conference titled "Fetal Reduction: Elective Or Selective?" and submitted a version for the volume to be published from that conference by Purdy and Donchin. She is currently an Assistant Professor of Sociology at the University of California at Santa Cruz, and is revising her dissertation into a book, The Making of the Unborn Patient , from Rutgers University Press. She is also beginning a new project on environmental health, specifically controversy surrounding hormone disruptors.
Deborah R. Gordon, Ph.D. , is a medical anthropologist
from the Center for the Study and Prevention of Cancer in Florence,
Italy. Dr. Gordon recently began a study of the entry of presymptomatic
genetic testing for cancer in Europe, and the evolution of policy and
counseling around it. During her two-month summer fellowship at Stanford
in the summer of l996, she participated in the Breast Cancer Working
Group, read extensively on issues concerning genetic testing for breast
cancer, and co-authored four chapters for the white paper report: "The
Search For Causes And The Turn Toward Genetics," "The Cultural Context
Of Genetic Testing," "Risk, Probability, And Decision Making," and "Genetic
Testing For Breast Cancer Predisposition In Europe: Some Comparisons
With North America." During her fellowship, Dr. Gordon gave seminar
presentations at the Institute for Social Change at the University
of California at Berkeley, and the Department of Psychiatry at Stanford.
She also conducted research interviews on genetic testing with local
practitioners. She made contacts that led to plans for field research
in the Bay Area during the summer of l997 on genetic testing for breast
cancer, which will be compared with field research in Europe. Since
returning to Italy, Dr. Gordon attended a number of international conferences
on hereditary breast cancer and genetic testing/counseling in Liguria,
Italy, Rome, and Lyon, France, where she interviewed representatives
from many European countries. She is participating in a 3-year EC Demonstration
Project on Familial Breast Cancer, and organized a multi-disciplinary
Concerted Action proposal for the EC on Ethical, Social, and Legal
Implications of Testing for Genetic Predisposition for Cancer in Europe,
with particular emphasis on the implications for the 'non-target' population.
She plans to pursue funding for a joint North American-European project
on these topics. Dr. Gordon commented on the PGES Executive Summary,
and attended the PGES conference on Genetic Testing for Breast Cancer
in San Francisco. At that time, she also organized and participated
in two symposia, one for the World Congress of the International Association
of Bioethics, and the other for the American Anthropology Association
Annual Meeting. These symposia included her own and others' papers
that addressed issues related to genetic testing, risk and international
bioethics. Dr. Gordon will soon resume her field research in Italy
on approaches toward risk and genetics, in particular, high risk for
breast cancer.
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