TITLE: The Ethics of Identifying Race in the New Genetics
PI: Sandra Soo-Jin Lee, Ph.D.
CO-INVESTIGATORS: Barbara Koenig, Ph.D. and Joanna Mountain.
PROJECT DATES: 09/22/00 - 07/31/03
FUNDER: National Human Genome Research Institute, NIH
Recent developments in genomic technology and human genetic variation research have focused on the identification of single nucleotide polymorphisms, or SNPs, and their association with complex diseases. Critical to this research is the collection and storage of DNA samples from individuals, which has resulted in a proliferation of publicly and privately funded cell repositories. This project is an ethnographic study of culture, power and the meaning of genetic difference in the collection and storage of DNA samples in the United States from racially and ethnically identified populations. A central goal of this research is to determine how taxonomies used by publicly funded cell repositories to categorize racial and ethnic difference impacts the trajectory of genomic medical research; and how developments in genetics research impact on social and cultural approaches to race and human difference. Critical race theory is used in investigating the ethical and social implications of human genetic variation research and its impact on the production of medical and knowledge and its ultimate impact on health disparities between racially identified populations.
TITLE: Program in Genomics, Ethics, and Society
Genetic and Environmental Influences on Adolescent Tobacco Use (State of California). PI: Barbara Koenig, Ph.D.
TITLE: Social / Ethical Impact of Presymptomatic DNA Testing for BRCA1-2
PI: Barbara Koenig
FUNDER: Kaiser Foundation Research Institute
Presymptomatic DNA testing raises a host of ethical and social challenges for individuals in high risk families and for society as a whole. A key unknown in making a genetic test for BRCA1 and BRCA2 available is how women and their families will respond to the knowledge that they carry a gene that conveys susceptibility to breast cancer. This longitudinal study addresses this question by qualitatively investigating high-risk individuals' attitudes about and experiences with genetic testing for breast cancer.
TITLE: Presymptomatic Genetic Testing for Breast Cancer: A Pilot Study of Social and Ethical Issues Confronting High Risk Families
PI: Barbara Koenig
FUNDER: The National Cancer Institute (through the Northern California Cancer Center )
The research, carried out using the unique resource provided by the NCCC registry of hereditary breast cancer families in Northern California, aims to (1) describe how individuals in high risk families understand and experience being at an elevated genetic risk for breast cancer; (2) compare the "folk models" or popular understandings of genetic cancer risk with current scientific knowledge; (3) compare the attitudes and beliefs of key California ethnic groups; and (4) describe how information about genetic risk of cancer is communicated.
TITLE: Multimedia, Interactive Courseware in Cancer Genetics
PI: Sally Tobin
PROJECT DATES: 11/01/99 - 11/30/00
FUNDER: National Institutes of Health (SBIR) (Subcontract from Communication Wave)
This project created a pilot interactive, multimedia CD-ROM about cancer genetics for physicians and an evaluation version of a web site about breast and ovarian cancer for patients and families. The physician CD was tested in a grand rounds format both in an academic setting and in a community hospital. In addition, the CD was tested by 25 physicians in an office setting. The web site was rated by members of the public both over the Internet and as a portable kiosk. Both the CD and the web site received outstanding evaluations by users.
End of Life
TITLE: Cultural Diversity and Ethical Decisions in AIDS Care for Women
PI: Barbara Koenig
FUNDER: University of California Universitywide AIDS Research Program
The project is a study of medical decision-making by female patients with advanced HIV disease who receive care in urban clinics in the San Francisco Bay Area. The primary aims of the study are to improve clinical services to women with HIV from diverse cultural backgrounds and to improve education for health care providers about end-of-life decision-making.
TITLE: Dying in an African-American Community: An Ethnographic Study of Death Throughout the Life Cycle
PI: Barbara Koenig
FUNDER: Open Society Institute's Project on Death in America
Not only do African-Americans die at rates higher than other Americans, but recent evidence suggests that many services available to whites, such as hospice or home care, are under utilized. The purpose of this project is to conduct a detailed ethnographic study of death and the dying process across the life cycle in one African-American community in California. The insights provided by the project will be of immediate value in educating health professionals, improving clinical care and developing end-of-life policies sensitive to cultural differences.
TITLE: Culture, End-of-Life Care, and Bioethics: What Difference Makes a Difference?
PI: Barbara Koenig
FUNDER: The Robert Wood Johnson Foundation
Improving care at the end of life is a daunting task. Given the increasing cultural diversity of the U.S. population, an important feature of that task will be taking difference into account. An invitational meeting was held in September 1996 at the Hastings Center for 25 invited scholars and clinicians whose work focuses on cultural diversity, end-of-life care, and bioethics. Various categories of difference were explored (culture, race, religion, disability status, social class, and so on), as well as their implications for clinical practice. A number of publications are expected based on the papers prepared for the conference, including a book, a special issue of Cambridge Quarterly of Health Care Ethics, and an essay for a popular magazine.
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TITLE: Filmmaker-in-Residence Program
PI: Barbara Koenig
PROJECT DATES: 01/01/99 - 12/31/00
FUNDER: Greenwall Foundation
Should Health Care Be Rationed to Cigarette Smokers? An Empiric Study and Ethical Analysis
Over the past decade, California has instituted a successful public health campaign to reduce the number of active smokers in the state. One result of that campaign has been the increasing stigmatization of the habit of smoking and of smokers themselves. Although the health benefits of a reduction in smoking are clear and noncontroversial, there may be unintended social and ethical consequences to health messages which promote a cultural climate in which smoking is not only disapproved of but in which the smoker is held as morally or socially unacceptable. One such possible consequence is the effect that campaigns may have on the distribution of health care dollars and scarce resrouces to smokers. The difficulty lies in distinguishing just, ethical allocation of care to smokers, that might include some limitations or denials of care, from those allocation decisions that are based merely on bias or prejudice.
Addressing these critical ethical and policy dilemmas requires a combination of approaches. The focus of this project is empirical research to document the current status of rationing services to smokers. We also plan to create a Working Group, composed of experts in health economics, health services research, philosophy, bioethics, and health promotion, as well as lay representatives, to issue ethical guidelines to assist in determining appropriate care for smokers.
TITLE: Ethical Issues in Health Promotion and Disease Prevention PI: Barbara Koenig
FUNDER: California Wellness Foundation
Carried out in collaboration with the Hastings Center and the Stanford Center for Research in Disease Prevention this project will examine a range of ethical problems, including the scientific, medical and economic credibility of efforts to change health behavior; the moral dilemma of achieving a just balance between prevention/promotion needs and acute care needs; the legitimacy of various forms of education, coercion and the use of incentives to shape or modify health behavior; and the place and role of cultural values in shaping attitudes toward health promotion and disease prevention.
Click here for information on our December 1997 conference, Health Promotion and Disease Prevention: Ethical and Social Dilemmas
TITLE: Direct-to-Consumer Advertising of Tamoxifen: A Pilot Study
PI: Linda Hogle
PROJECT DATES: 01/01/00 - 06/30/00
FUNDER: Greenwall Foundation
This project examined issues related to two fast-growing trends in health care: the practice of advertising prescription pharmaceuticals directly to potential users, rather than to doctors, and the rise of chemoprevention, by which patients who are thought to be "at risk" for certain diseases are given drugs prophylactically to reduce risk, rather than to treat a disease. The project focused specifically on breast cancer chemoprevention, and analyzed the responses of women, breast cancer activists, and physicians to the advertising campaign and to the notion of chemoprevention.
1998-99 October 17, 1998
Individualizing Medicine Through Genomics: Ethical, Legal, and Social Challenges
- Funded by : U.S. Department of Energy and SmithKline Beecham Corporation
- Conducted by : Henry T. Greely (PI), Barbara Koenig, Laura McConnell
Click here for a more detailed description of this project, as well as information about our October 1998 conference
May 27, 1998
21st Century Dilemma: Medical Ethics is Unethical Public Policy
Speaker : Richard D. Lamm, LL.B., Professor and Co-Director, Center for Public Policy and Contemporary Issues, University of Denver; Governor of Colorado (1975-1987).
October 25, 1997
Genetic Testing and Alzheimer Disease
May 28, 1997
Reforming the FDA: Has the Time Come?
Speaker : Philip Lee, M.D. , Professor Social Medicine (emeritus), University of California, San Francisco.
March 10, 1997
If the Rubber Hits the Road: Practical Problems with Regulating Physician-Assisted Suicide
Speaker : Joanne Lynn, M.D., M.A., M.S., Director, The Center to Improve Care of the Dying , The George Washington University Medical Center, Washington, D.C.; Principle Investigator of the SUPPORT study.
September 27-28, 1996
Comprehensive Care of the Terminally Ill: A Northern California Consensus Development Conference for Guidelines on Aid-in-Dying
On September 27-28, 1996, SCBE convened this invitation-only conference. Chaired by Dr. Ernlé Young, the event included 120 participants and over 25 speakers and workshop leaders. During the course of the conference, small groups met to discuss and suggest guidelines on topics such as "The Managed Care Context", "Ensuring Adequate Palliative Care", "Psychiatric Challenges", "The Doctor-Patient Relationship", and "The Role of Ethics Committees and Informed Consent". The resulting recommendations are now undergoing further development by a steering committee of Northern California experts, and will be submitted to a major medical journal. This ongoing discussion promises to be especially timely given the U.S. Supreme Court's recent decision on the constitutionality of physician-assisted suicide.
May 1, 1996
The Clash Between Economics and Ethics in the Context of Managed Care
Speakers : Alain Enthoven, Ph.D. , Professor of Public and Private Management, Graduate School of Business; Professor by Courtesy, Health Research and Policy; and Kate Christensen, MD, Regional Ethics Coordinator, Northern California Kaiser Permanente Medical Group, Inc., and member of the Ethics Committee of the California Medical Association.
January 22, 1996
Health Care for Illegal Immigrants: A Moral Debate Speakers : Ronald Prince, Chairman of Save the State and co-author of Proposition 187; and Yolanda Vera, JD, Staff Attorney, National Health Law Program; co-author of "An Analysis of Financial Hardship Imposed November 23, 1996 Genetic Testing for Cancer: Ethical, Legal, and Social Issues in Testing for Breast Cancer Susceptibility