A Trans-Atlantic Dialogue on Genetics and Health: Research Frontiers and Ethical, Economic, Legal, and Social Issues

A Symposium Co-hosted by The Royal Norwegian Embassy, Washington D.C. through its Norwegian Research and Technology Forum in the U.S. / Canada and The Center for Strategic & International Studies Date: May 16, 2003

Time: 8:30am to 12:30pm

Venue: Center for Strategic and International Studies 1800 K Street; N.W. Washington, D.C. B1 Conference Room

Background and Purpose

Leaders from research, industry, government and public policy will forecast research advances in the “new biology,” likely health applications, and the ethical, economic, legal, and social issues. Participants will include representatives from national and international basic and applied research institutions, representatives from business and industry, and government and NGOs actively engaged in the defined seminar topics.

Agenda

Opening Remarks 8:30 to 8:40 am

• Knut Vollebaek, Ambassador of to the U.S., Forum Chair (confirmed) • Charles A. Sanders, Former CEO, Glaxo Inc. and Trustee, CSIS (Symposium Chair) (confirmed)

Keynote Address 8:40 to 9:10 am

• Introduction • The Honorable , Prime Minister of Norway (confirmed)

Session 1: Research Frontiers and Technological Convergence 9:10 to 9:30 am Expanding and applying our understanding of biological complexity will require convergence of information technologies, bioinformatics, nanotechnologies and other newly emerging technologies. The session will address opportunities and issues emanating from this integration. • Rita Colwell, Director, US National Science Foundation (confirmed)

Session 2: Pharmacogenomics 9:30 to 10:10 Pharmacogenomics, or “individualized” may dramatically improve the efficacy and safety of drug therapy. The session will consider issues such as equity in the distribution of health benefits, privacy, and regulatory requirements. • Steve Fodor, Chairman and CEO, Affymetrix, Inc. (confirmed) • Sandy Thomas, Director, Nuffield Council on Bioethics (confirmed)

1

Session 3: Regenerative Medicine and Aging 10:10 am to 10:50 am Speaker William Haseltine has said "As we understand the body's repair process at the genetic level, we will be able to advance the goal of maintaining our bodies in normal function, perhaps perpetually." The session will explore current research and the economic and social implications of its potential application.

• William Haseltine, President and CEO, Human Genome Sciences, Inc. (confirmed) • Richard Jackson, Adjunct Fellow, CSIS Global Aging Initiative (confirmed)

Session 4: Pre-Implantation Genetic Diagnosis and Assisted Reproductive Technologies (ART) 10:50 to 11:30am

Genetic analysis of early embryos developed in vitro can provide information on inherited genetic and chromosomal disorders and other characteristics. The information can be used to choose embryos for implantation according to their genetic makeup, for example, those free from inherited diseases. The session will consider the course of unfolding knowledge, its potential applications, and respective regulatory regimes in the US and Europe.

• Mark Hughes, Professor and Director, Center for Molecular Medicine and Genetics, Wayne State University School of Medicine (confirmed) • Discussant: Ola Didrik Saugstad, Professor in , Dep. of Pediatric Research, The National Hospital (confirmed)

Session 5: Transatlantic Issues 11:30 to 11:50 am

Difference in national legislation, policies and opinions on the ethical, legal and social issues surrounding scientific research methods and technological innovation and application may impede scientific collaboration, technology and trade relations, and other areas of international collaboration. Dr. McLaren will provide an overview of current European Union policy views, as well as her personal insights.

• Anne McLaren, Principle Research Associate at Wellcome/CRC Institute,University of Cambridge, Member of EGLS, The European Group of Life Sciences, and of EGE, The European Group on Ethics (confirmed)

Panel on Issues and Paths for Continued Dialogue 11:50 to 12:30 pm

There currently are few transatlantic venues to share perspectives on policy issues. The panel will highlight primary points from the morning’s presentations and offer recommendations for future transatlantic collaboration.

• Torleiv Ole Rognum, Professor, Institute of Forensic Medicine, , and Member of The Norwegian Biotechnology Advisory Board (confirmed) • Barbara Rhode, Head of Unit, Ethics, Science and Society, Directorate General Research, EU Commission (confirmed) • Alex MacKenzie, Professor of Pediatrics, University of Ottawa, and Vice President of Research, Genome Canada (confirmed) • Thomas H. Murray, President, The Hastings Center (confirmed)

12:30 pm Adjourn Coaches depart for the Residence of Norway’s Ambassador to the U.S

2

3401 Massachusetts Avenue N.W., Washington D.C.

12:30 pm to 2:30 pm Reception offered by Norway’s Ambassador to the U.S. Knut Vollebaek, at the Ambassador’s Residence, in the presence of Prime Minister Kjell Magne Bondevik, celebrating Norway’s National Constitution Day

3