A workshop held jointly by Cornell University and Sophia University

"Empirical Bioethics in Cultural Context: Genetic Confidentiality, Ownership, and Public Participation in the United States and Japan

bioethics 1January 30 to February 1, 2003

Objectives

This workshop aims to bring American and Japanese bioethicists, social scientists, biomedical researchers, and patient representatives together to discuss diverse notions of genetic confidentiality and genetic ownership. The workshop is a forum for presenting empirical research, developing cross-cultural comparisons, and exploring new trends in public engagement in decision making about genetics.

Empirical Research. The two-day workshop focuses on the descriptive approaches of historical and ethnographic methodology. Ethnographic methodology is particularly helpful in clarifying normative knowledge and hidden problems not usually measurable by statistical variables. Clear delineation of suitable empirical approaches will provide useful guidelines for future research and future debates on policy-making in the areas of genetic confidentiality and ownership.

Comparative Perspectives. This workshop encourages dialogue between Japanese and North American specialists who have been working on similar topics and subjects such as the regulation of genetic confidentiality and the commodification of genetic information and samples. The debate and dialogue helps participants deepen their cross-cultural understanding of genetic ownership and the factors that shape new forms of property and the public domain concept of each country.

Public Engagement. This workshop highlights the emerging roles of lay support groups. Recent empirical studies explore the way in which these groups play a significant role in decision-making in genetic research and practices. The final session focuses on the case of lay support groups for Huntington's disease (a hereditary neurological disorder), since Huntington's disease has played a key role in the history of genetic research, predictive testing, and DNA banking.

bioethics 2Program

Thursday, January 30th, 2003

Introduction: 10:00am-10:15am
Professor Stephen Hilgartner (Cornell University)
Professor Takahiro Ueyama (Sophia University)

 

Session 1: 10:15am-12:30am
Genetic Confidentiality: Policy-Making for Genetic Guidelines

 

Chair:
Dr. Yoshio Nukaga (Max Planck Institute)
Presenters:
Dr. Ann Willey (Wadsworth Center/SNY Dept. of Health)
Professor Yoshinori Hiroi (Chiba University)

Commentators:
Professor Robert Kneller (Tokyo University)
Professor Darryl Macer (Tsukuba University)

Public Lecture: 2:30pm-4:30pm
Beyond the Beginning: Bioethics, Health Policy, and the Human Genome Project

Chair:
Professor Takahiro Ueyama (Sophia University)

Keynote speaker;
Professor Barbara Koenig (Stanford University)

Commentator:
Professor Osamu Kanamori (University of Tokyo)

Friday, January 31st, 2003

Session 2: 9:00am-11:15am
Genetic Ownership: Ethnographic Approach to Clinical and Laboratory Contexts

Chair:
Professor Takahiro Ueyama (Sophia University)

Presenters:
Professor Hiroshi Yamanaka (Osaka University)
Professor Stephen Hilgartner (Cornell University)

Commentators:
Professor Barbara Koenig (Stanford University)
Professor Koichi Sumikura (National Graduate Institute for Policy Studies)

bioethics 3Session 3:12:30am-2:45pm
Genetic Citizenship: Ethnographic Approaches to Support Groups.

Chair:
Professor Barbara Koenig (Stanford University)

Presenters:
Professor Rayna Rapp (New York University)
Professor Azumi Tsuge (Meijigakuin University)

Commentators:
Dr. Alice Wexler (UCLA, and Hereditary Disease Foundation)
Professor Yukiko Saito (Kitasato University)

Session 4: 3:15pm-5:30pm
Historical Perspectives on Genetic Identities: The case of Huntington's Disease.

Chair:
Professor Stephen Hilgartner (Cornell University)

Presenters:
Dr. Alice Wexler (UCLA, and Hereditary Disease Foundation)
Dr. Yoshio Nukaga (Max Plank Institute)

Commentators:
Professor Rayna Rapp (New York University)
Professor Kaori Muto (Shinshu University and Japan Huntington's Disease Network)

Concluding Remarks:
Dr. Yoshio Nukaga (Max Planck Institute)