PGES WIP Seminars
PGES Works in Progress Seminar Series
The Works in Progress Seminar has been a feature of The Stanford Program in Genomics, Ethics, and Society (PGES), and is open to the public. These seminars provide a forum for discussion of the social, policy, legal, philosophical, and ethical implications of emerging genetic technologies. The sessions are planned to be open discussions of new work by the presenters.
Free and open to the public.
Past PGES Seminars
FALL 2001
Tuesday, December 11, 12:00-1:30 pm
Room M110, Stanford University School of Medicine
"Ethics and Personhood: Some Issues in Contemporary Neurological
Science and Technology"
David L. Perry, Ph.D.
Director of Ethics Programs, Markkula Center for Applied Ethics, and Lecturer
in Religious Studies, Santa Clara University
Modern advances in medical technologies and procedures such as CPR, ventilators, and artificial feeding and hydration, while clearly beneficial to patients in many cases, have also made it possible to maintain biological functioning indefinitely for thousands of individuals in persistent vegetative states and other conditions where consciousness is impossible. These developments raise a number of fundamental questions about personhood and the ethics of life-sustaining medical treatment. Ethical dilemmas can also arise in relation to severely demented patients when their previously stated preferences conflict with what caregivers perceive to be in their best interests.
WINTER / SPRING 2001
February 12, 2001
"Procreative Liberty and 'Designer Children': A Christian Feminist
Analysis"
Karen Peterson-Iyer
Doctoral candidate, Yale Department of Religious Studies/Ethics
This talk examined the genetic manipulation of children, specifically the appropriate limits which should be set to such manipulation. Ms. Iyers presented a liberal analysis of various sorts of genetic manipulation and critique that analysis from the standpoints of feminist theory on the one hand, and Christian tradition on the other. She also offered specific recommendations based on a positive portrait of human flourishing, derived from these earlier critiques.
February 22, 2001
"Brain Imaging and Cognitive Neuroscience: The Newest Ethical
Frontier"
Paul Root Wolpe, Ph.D.
Faculty Fellow, Center for Bioethics, University of Pennsylvania
Chief, Bioethics and Human Subjects Protection for NASA
The attention given to the genetics revolution has obscured an equally powerful and perhaps more immediate technological advance: new brain imaging technologies and the attendant advances in cognitive neuroscience. The ability to observe the brain's function in real time, neuropharmacological interventions that can enhance and alter cognitive functioning, greater understanding of the relation between behavior and brain structure, and other similar advances raise important social, legal, and ethical questions. In a "survey" of emerging ethical questions, we looked at brain research, clinical medicine, and issues in social policy to explore the nature of, and some solutions to, the challenges of the modern neurosciences.
April 6, 2001
"Distributing the Financial Benefits from Research: Insights
from the Canavan Case"
Jon F. Merz, Ph.D., J.D.
Assistant Professor, University of Pennsylvania Center for Bioethics
The gene that causes Canavan Disease was discovered by researchers at the Miami Children's Hospital (MCH) in 1993, and a patent covering the diagnostic test was issued in 1997. The research was performed with extensive participation of families stricken by the disease, that helped identify other families from around the world, helped solicit blood for the research, and provided financial support for the work. This case study is based on professional involvement of the author and interviews with numerous individuals involved in the research. The case highlights the need for patient and other advocacy groups to proactively assert their interests in the intellectual property resulting from research in which they participate. Researchers and IRBs also must consider these interests in planning research, assessing the potential benefits, and formulating policies for consent .
April 10, 2001
"DNA Banking - Ethical Issues"
Phil Lavori, PhD
Professor of Health Research and Policy, Stanford University
Dr. Lavori spoke about the challenges met while designing a program-wide, national DNA tissue repository for the VA Cooperative Studies Program. Early experiences and lessons learned were described, and some of the specific strategic operating decisions were offered for discussion.
May 8, 2001
"Genetics and Disability - Ethics of Pre-implantation Genetic
Diagnosis "
Theresa Drought, PhD
Co-Director, Regional Ethics Program, Kaiser Permanente Northern California
June 12, 2001
"Identity After the Human Genome Project "
Laurie Zoloth, PhD
Director, Jewish Studies Program, San Francisco State University
FALL 2000
September 12, 2000
From Predictive Genetic Testing to Individually-Tailored
Prevention: Ethical Considerations in the Management of Familial Hypercholesterolemia
Lorraine Caron, Ph.D. , former
Post-Doctoral Fellow, Stanford Center for Biomedical Ethics
This presentation focused on ethical, psychological and social issues raised by risk assessment and management following the diagnosis of familial hypercholesterolemia (FH), a genetic susceptibility to cardiovascular diseases. This case analysis enables us to start thinking about the practical and ethical issues linked to the widely publicized promise of "the new molecular medicine." At the juncture of classical medical genetics and post-genomic preventive interventions (referring to two causal models of genetic risk expression: mendelian and epidemiological), the case of FH highlights the need to think about the fundamental features of "individually-tailored, genetically-based preventive practices" and of the at-risk individual/doctor relationship in order to ground the ethical inquiry. Selected issues of risk communication and risk management were presented to illustrate this situation.
October 10, 2000
Biotechnology: What Kind of Future Do We Want?
Marc Lappé, Ph.D., Director, Center for Ethics and Toxins. Author
of "Against the Grain: Biotechnology and the Corporate Takeover of Your Food."
Biotechnology is often presented as a panacea to world food problems, overreliance on pesticides and undue dependency on laborious means of selecting new crops. The claim that biotechnology as a process should only be critiqued if its immediate byproducts are different from those produced by conventional agriculture needs re-examination in light of recent scientific findings. This presentation reviewed some of the science and presented a novel ethical analysis of just why special concerns should be focused on biotechnology.
November 17, 2000
Racial Prescriptions: Diabetes Science and the Making of
Pharmaceutical Markets
Michael Montoya, Department of Anthropology, Stanford University
This talk explored the use of racialized DNA in the academic, corporate and state-funded search for genetic susceptibility for Type-2 diabetes. Drawing upon ethnographic fieldwork in wet and dry labs and at scientific conferences, Montoya examined how concepts of race and ethnicity are used to organize genetic research, the process of scientific publication, and the marketing of pharmaceutical products. The case of diabetes shows how race, and the social implications for its use, are reconfigured at each stage in drug R&D. It illustrates that in spite of the socially-conscious intentions of scientists, the social and political conditions that make diabetes possible get obscured while racially-marked bodies become pathologized.
December 12, 2000
Challenges in Putting Phenotype Data in a Public Pharmacogenetics
Database
Russ Altman ,
M.D., Ph.D., Associate Professor of Medicine, Stanford University
Pharmacogenomics is the study of how variations in human genes correspond to variations in how humans respond to medications. We are involved in the creation of a pharmacogenomics knowledge base ( PharmGKB ) that has a mandate from the NIH to accept and disseminate data about genotype, molecular & cellular phenotype, and clinical phenotype related to pharmacogenomics. There are least three kinds of issues we must address in order to respond to this mandate: respect for intellectual property issues, respect for publication priority issues, and respect for patient confidentiality and security. Dr. Altman discussed current approaches to these three issues, in addition to a brief overview of the technical informatics challenges.
December 19, 2000
Genetic Transparency and Social Unpredictability: Remarks
on a Genetic Screening Program in Cyprus
Stefan Beck, Ph.D., Assistant Professor, Dept. of European Ethnology, Humboldt
University, Berlin; Visiting Assistant Professor, Dept. of Anthropology, UC
Berkeley
Dr. Beck's presentation discussed some of the social and cultural consequences of a genetic screening for Cystic Fibrosis in a small town in Cyprus, an island in the eastern Mediterranean. Based on ethnographic fieldwork, effects on kinship and marriage patterns, perceptions of illness, and personal and political identity are discussed. The findings were contextualized by examining the successful prevention program for ß-Thalassemia which was implemented on the island in the late 1970s, the specific circumstances of a post-colonial health care system, and competing knowledge practices.
WINTER/SPRING 2000
May 23, 2000
Genomic Medicine as Cultural Expression- Animating Discourses
Patricia Benner, Professor, UCSF, Dept. of Physiological Nursing
Articulating lifeworld and spiritual aspirations in scientific discourses, and scientific visions of human freedom and mastery in lifeworld discourses, may create new ethical dialogues between our lifeworlds and sciences. These linkages occur in our practices and cultural discourses. However, the linkages are somewhat mystified by the explicit passing over of human lifeworlds in the formal practices of laboratory and clinical sciences. Discourses that disclose self-understandings and spiritual visions are identified in literature from biotechnology, genomic medicine, and popular media. Animating myths, fears, and hopes show up even in the most scientific of writings. Patricia Benner articulated some of these self-understandings and created a dialogue between ethical theories and these animating discourses. While ethical, legal, and policy discourses will continue to reflect an urgent need for protection of rights required in a Civil Society (and this discourse perhaps has never been more important), questions were raised about the ethical possibilities of examining the goods behind these rights in a pluralistic society. The animating discourses were used as a starting point for considering notions of good in relation to biotechnology and genomic medicine.
February 8, 2000
Gwen Anderson, Ph.D., Stanford Center for Biomedical Ethics
Phenomenological analysis: Complex patterns of decision making
for prenatal genetic testing by 15 expectant parents.
March 7, 2000
Jeff Botkin, M.D., Professor, University of Utah, Dept. of Pediatrics
Wrongful birth and professional standards for prenatal diagnosis
April 11, 2000
Charles Epstein, Professor, UCSF, Dept. of Pediatrics
A medical geneticist looks at what society thinks about genetics in
the future
April 18, 2000
Paul Rabinow, Professor, UC Berkeley, Dept. of Anthropology
Transnational Ethics and the Genome
98-99 SEMINARS
October 1998
Genotype / Phenotype Research: Implications
of Iceland's Proposed Research-Oriented Universal Health Database
Speaker: Henry T. Greely, J.D., PGES Co-Director
and Professor of Law, Stanford University
Iceland is a country of 260,000 people with an unusual degree of genetic homogeneity, extraordinary interest in genealogy, and an excellent and longstanding national health system. As such, it is joining Finland and Utah's Mormons among populations of particular interest to researchers looking for genes associated with human disease. Dr. Kari Stefansson, an Icelandic native and former professor at the medical schools at Chicago and Harvard, has returned to Iceland to found, with venture capital backing, a company called DeCode Genetics , which seeks to do such research. In February 1998, DeCode reached an agreement with Roche worth a possible $300 million over five years to explore six specific diseases. Now, the Icelandic government has proposed to create a computerized universal health database for the entire Icelandic population, to be paid for and created by DeCode and to be used for research. The proposal is under active consideration in the Icelandic parliament and a decision is expected soon. The proposal raises numerous interesting questions of science, ethics, and fairness, which were discussed in the seminar.
97-98 SEMINARS
June 1998
The Genome and International Health: Developing Guiding
Principles for the World
Health Organization
Speaker: Abdallah S. Daar, M.D., D.Phil. (Oxford),
FRCP, FRCS, Visiting Scholar, Stanford University Center for Biomedical Ethics;
Chair, Department of Surgery, Sultan Qaboos University, Oman; World Health
Organization Special Rapporteur, Working Group on Genetic Manipulations
In April 1998, the World Health Organization appointed Dr. Daar as special rapporteur for genetic manipulations / artificial recombination. He has been charged with developing international guiding principles and specific recommendations for WHO member states that will (a) maximize the human benefits from the new genetics, (b) avoid the dangers this science may pose, and (c) standardize, as far as possible, the ethical aspects of member state responses. Dr. Daar discussed the background and possible future of this WHO initiative.
Preimplantation Diagnosis: Its Use in Marfan
Syndrome
Speakers : Uta Francke, M.D., Professor of Genetics and
Pediatrics, Stanford University School of Medicine; and,
Linda Giudice, M.D., Ph.D., Professor and Chief, Section of Reproductive Endocrinology
and Infertility, Department of Gynecology and Obstetrics, Stanford University
School of Medicine; Director, Stanford Center for Research on Women's Health
and Reproductive Medicine
Preimplantation diagnosis is a relatively new technique that allows genetic testing of early human embryos produced through in vitro fertilization processes. Decisions to transfer or not to transfer particular embryos can then be made after this diagnostic procedure, thus reducing or eliminating the possibility that any resulting fetus would suffer from the disease. We discussed the challenges and limitations of this technique and its possible applications. One example considered for preimplantation genetic diagnosis was Marfan syndrome, an autosomal dominant disorder of connective tissue caused by mutations in the gene for fibrillin-1.
May 1998
Case Studies: Ethical Issues in the Biotech Industry
Speaker : Margaret Eaton, Pharm.D., J.D., PGES Fellow; formerly
Associate University Counsel (medical and health law) in the Office of
General Counsel at Stanford University, and Clinical Risk Management
and Legal Counsel, Stanford University Medical Center
Dr. Eaton, a fellow in the Stanford Program in Genomics, Ethics & Society, is developing jointly with the Stanford Graduate School of Business a resource on business ethics for the pharmaceutical and biotechnology industries. At this Works-in-Progress Seminar, Dr. Eaton presented a proposed case study for the project that illustrates how two pharmaceutical companies handled post-marketing ethical issues. In this example, the two companies were selling organ transplant anti-rejection drugs and dialysis services in the People's Republic of China. The previous winter, newspaper and other media sources reported on the fact that human organs for transplant in China were coming from executed Chinese prisoners under circumstances that were ethically questionable. One of the companies, citing ethical reasons, decided to abandon its business in China, while the other company continued its business there. This case study compared the decisions of the two companies from an ethical and social perspective.
I nside the National
Bioethics Advisory Commission
Speakers : R. Alta Charo, J.D., PGES Fellow; Associate Professor
of Law and Medical Ethics, University of Wisconsin; Member, National
Bioethics Advisory Commission; and,
David R. Cox, M.D., Ph.D., Professor of Genetics and Pediatrics; Co-Director,
Stanford Human Genome Mapping Center; Member, National Bioethics Advisory Commission
The Clinton Administration created a National Bioethics Advisory Commission (NBAC) to provide advice on bioethics issues of national importance. After a long organizational period, the NBAC held its first meeting in late 1996. In March 1997, it was pushed into the headlines when the President asked it to report to him, within 90 days, on human cloning, post-Dolly. Professors Cox and Charo, two NBAC members presently at Stanford, discussed the Commission, its work, and its inner workings at this special PGES Works-in-Progress seminar.
May 1998
The Media: Watchdog, Lapdog, or Disinterested Observer?
Speaker: Sally Lehrman, independent journalist, and
President, Northern California Chapter, Society
for Professional Journalists
A discussion of media's role in the dissemination of science and the contemplation of its ethical, legal and social implications. How journalists pursue fairness and accuracy in coverage, and the special challenges to reporting posed by genetic technology. Sally Lehrman, president of the Northern California chapter of the Society of Professional Journalists and a former John S. Knight Fellow at Stanford, has covered bioscience for more than a decade.
April 1998
The Chinese "Eugenics" Law
Speaker: Henry T. Greely, J.D., PGES Co-Director
and Professor of Law, Stanford University
On July 1, 1995, a new statute on "Maternal and Child Health Care" took effect in the People's Republic of China. The 38 section statute includes four sections that appear to be inspired by the eugenics movement. Two sections require medical examinations and certification before marriage, with some marriages allowed only with long-term contraception or sterilization. Other sections require prenatal examinations for pregnant women in couples where one member has a serious genetic disease, and may be read as strongly encouraging abortion if the fetus has a positive test result. The statute has been controversial and led to a threat by some geneticists, since withdrawn, to boycott a major conference in Beijing this August. Hank Greely described the history behind the law and attempt to put it in context, and then discussed the issues it raises.
March 1998
Gene Chip Technology
Speaker : Thane Kreiner, Ph.D., Director, Marketing and Project
Management, Affymetrix, Inc.
Affymetrix, Inc. developed the "GeneChip" system, a platform for acquiring, analyzing and managing genetic information. Consisting of disposable DNA probe arrays containing selected gene sequences on a chip, instruments to process the arrays, and software to manage the information, GeneChip technology enables researchers to rapidly analyze large amounts of genetic information. The system is intended as a tool to help understand the human genome, and to improve the diagnosis, monitoring and treatment of disease. According to an article in Fortune magazine, the impact of such chips will "transform the practice of medicine and the quality of our lives... They give medical researchers the ability to analyze thousands of genes at once -- in effect, to speed-read the book of life."
Dr. Kreiner presented a primer on the technology and its uses, and future directions for product development and marketing. He also discussed the ethical and social issues arising from gene chip technology, and how Affymetrix is addressing them.
Do We Have a Moral Right to Useless Genetic Information?
Speaker : Rachel Cohon, Ph.D., PGES Fellow; Assistant Professor
of Philosophy, Stanford University
Information about an individual's genotype can turn out to be of little or no use to that person in at least two ways. First, it can be a poor predictor of disease or disability; an example of this is APOE genotyping, which tells little about the likelihood of an asymptomatic person's developing Alzheimer disease in the future. Second, such information may be of little or no use for decision-making. Whatever the predictive quality of the information may be, there may be nothing the patient can do to change the outcome (as with Huntington's disease). Some argue that in either circumstance, it is morally better not to make the information available to the individual on the grounds that people tend to misconstrue probabilities, are likely to suffer emotionally, and where possible, make poor decisions based on the genetic information. Some would refuse to perform testing on moral grounds, even if the patient were to request it and offer to pay for it him or herself.
These concerns about the tendencies of patients to misunderstand and react with distress to accurate information bring to mind old literature about whether to inform patients about the risks of medical procedures (informed consent) or about their diagnoses or prognoses. The opposing view is that these consequentialist considerations are overridden by the moral importance of individual autonomy. Patients have a right to know vital information about themselves so they can exercise autonomy. Dr. Cohon's question for this Works-in-Progress Seminar: Do patients similarly have a right to know what is in their genes? The philosophical basis for autonomy-based claims to a right to information about one's own body, to see whether the same underlying concepts would apply to useless or nearly useless genetic information was investigated.
February 1998
Business Ethics in Biotechnology
Speaker : Margaret Eaton, Pharm.D., J.D., PGES Fellow; formerly
Associate University Counsel (medical and health law) in the Office of
General Counsel at Stanford University, and Clinical Risk Management
and Legal Counsel, Stanford University Medical Center
Businesses operate in two basic settings- the market and what is called the "nonmarket". The nonmarket setting deals with social, ethical, political and legal issues, and encompasses interactions with governments, the public, the press, stakeholders, and citizen activist groups. The biotechnology industry operates in an especially complex nonmarket setting since the products it produces are subject to intricate government regulation, close scrutiny by the public and the press and often intense backlash from patient activist groups. Products such as genetically altered food and drugs, gene tests, and gene therapies, while possessing great potential for health improvement, also raise strong concerns about just how far genetic manipulation for profit should go before acceptable boundaries have been passed. The ELSI Research Program at the National Human Genome Research Institute has called for studies to analyze the ethical, legal and social issues that result from use of genome information and, ultimately, biotechnology business managers will have to face these issues as they bring genomic products to market. This Works-in-Progress Seminar described a proposed publication on business ethics co-developed by PGES and the Stanford Graduate School of Business. The book was intended to introduce basic concepts of business ethics and apply them to cases involving ethical and social issues that arise as biotechnology products go from initial development, through human research to consumer markets. The ultimate goal of this book is to give biotechnology business managers the tools to analyze situations where ethical and social issues exist in conflict with business goals, to evaluate alternative courses of action, and to make effective and appropriate decisions.
B iology as Ideology: Normative Uses of Biological Categories
in Legal Decision Making
Speaker : R. Alta Charo, J.D., PGES Fellow; Associate Professor
of Law and Medical Ethics, University of Wisconsin; Member, National
Bioethics Advisory Commission.
Law frequently turns to biology for definitive solutions to social dilemmas, e.g., Who is the mother of a child? Who is a person under the Constitution? Who is dead and eligible for use as an organ donor? Who is a woman eligible for an Olympic team? Who is 'black' and who is 'white' for the census? Yet these questions are not about biology, but about social relations (who should have primary access to and responsibility for a child?), rights (who is entitled to be given equal protection of the law?), harms (who is beyond harm should organs be removed?), fairness (who should be allowed to compete against whom and why?), and social divisions (who is fortunate enough to enjoy privileges, and who must still struggle for them?). Indeed, law frequently adopts fictions to circumvent inconvenient or ambiguous biological facts, e.g., declaring death upon long absence, or using adoption to create a legal analog to a biological family. On the other hand, reliance on the seemingly objective truth of biology can forestall great injustices, such as the long failure of American law to recognize Native Americans and African-Americans as fully human and fully entitled to human rights. This talk briefly surveyed the use and misuse of biological categories in law, with special attention to the role of genetics as the new holy grail.
January 1998
Genetic Counseling and Testing for Breast and Ovarian Cancer
Susceptibility: The Experience of Members of High-Risk Families
Speaker : Anne Moyer, Ph.D., PGES Fellow
Cancer impacts families even when only one member is affected. This impact is more profound in families that have a strong family history of cancer and this may be part of the family's social fabric and individual members' self concept. The social, ethical, and individual consequences of offering genetic tests to members of breast and ovarian cancer families are the focus of the research Dr. Moyer discussed. This research is guided by several questions: How is information, about cancer, cancer risk, and genetic test results communicated within families? What "folk models" about genetics and risk will interact with new information provided by genetic counseling? What are the influences upon decisions regarding genetic testing? What will be the impact and outcome of receiving test results? Dr. Moyer presented preliminary findings from in-depth interviews with members of high-risk families undergoing genetic education, counseling, and testing in a clinical setting. Specifically, she discussed the impact of the experience of cancer in these families, how individuals in these families think about genetics and risk, their experience with genetic education and counseling, their reasons for opting for or against testing, and the impact of test results.
December 1997
The Commercialization of Genomics
Speaker : Marie Hirtle, LL.B., LL.M., PGES Fellow; Research
Associate, Law, Biotechnologies and Society Program of the Public Law
Research Centre, and Faculty of Law, University of Montreal.
Ms. Hirtle identified issues raised by the commercialization of genomics, and of genetic testing in particular, highlighting contrasts and similarities between the Canadian and American contexts.
November 1997
The Ethics of Preimplantation Diagnostics - A European Perspective
Speaker : Svend Andersen, Ph.D., Centre for Bioethics, Unit
for Ethics and Philosophy and Religion, University of Aarhus, Denmark
Dr. Andersen reported on recent legislation concerning preimplantation diagnostics, and the Bioethics Convention of the Council of Europe.
November 1997
Cultural and Policy Issues in Human Cloning
Speaker : Henry T. Greely, J.D., PGES Co-Director and Professor
of Law, Stanford University
Hank Greely's lengthy five part project on human cloning, which examined 1) the meaning and science behind different kinds of cloning before Dolly, 2) the science and implications of Dolly, 3) the social history of human cloning, 4) legal issues, and 5) policy issues. For this talk, he concentrated on the third and fifth issues - social history and policy issues.
For an event that has thus far never occurred, discussion of artificial human cloning has a long history, dating at least to 1932 and Aldous Huxley's Brave New World. Dolly is responsible for the latest of four periods of intense public concern about human cloning. The first part of the talk focused on those periods of public concern, not on the broader history of human cloning in literature and popular culture. It traced the roots, courses, and outcomes of the three earlier "cloning crises."
The final portion of the work attempted to analyze issues relevant to a public policy response to cloning. The general political and public reaction has been both sharp and negative, but several scenarios were discussed where human cloning may appear justified or justifiable. Hopefully, analysis of those scenarios will help clarify what kinds of limitations should be imposed on human cloning, should it become practicable.
October 1997
Bad Blood, Unknown Risks: Notifying Transfusion Recipients
of CJD Exposure
Speaker: Timothy A. Caulfield, LL.M., PGES Fellow,
and Research Director, Health Law Institute, University of Alberta
Several jurisdictions in Canada called for a withdrawal of blood products associated with Creutzfeldt-Jakob Disease (CJD), a human neurological disorder similar to bovine spongiform encephalopathy ("mad cow" disease). This climate of anxious uncertainty fueled the recommendation issued by the Canadian Red Cross Society that hospitals should notify recipients of the theoretical risks associated with the exposure to CJD associated blood products. Although a strictly legal approach tentatively supports a policy of notifying individuals, a more interdisciplinary analysis of the relevant issues arguably favors a policy of general public education and notification. This talk reviewed the relevant legal, ethical and scientific facts surrounding this controversial issue, which is also likely to arise, one way or another, with genetic information. In addition, there was an analysis of the results of a telephone survey of 1,200 Albertans which asked individuals about notification issues relevant to CJD.
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