Bioethics

BIO remains at the forefront of discussions on the ethical issues biotechnology engenders. Throughout the year, the bioethics staff monitors legislation, submits comments and testimony, and keeps up a dialogue with those in Congress, the administration and federal agencies. In addition, BIO seeks the input of public and religious leaders as the organization maps out its bioethics policies.

BIO ACTIONS
Cloning/Stem Cells

• Led legislative battle to defeat the Weldon-Brownback bill, which would have banned therapeutic cloning along with reproductive cloning.

• Featured Christopher Reeve in a session on regenerative medicine organized for the CEO and Investor Conference.

• Served on the board of the Coalition for Advancement of Medical Research, a coalition of more than 80 patient organizations and research groups. In addition, the Bioethics Department coordinated work with the women's health community.

• Monitored implementation of President Bush's stem cell policy.

Genetic Discrimination

• Developed amendments to proposals to ensure that research uses of data are protected and that key statutory definitions are consistent with technological progress.

• Worked with patient groups to develop support for BIO's position. Met with key Senate and House offices to push for a bill that would meet BIO specifications. The Senate Republican bill reflected BIO principles.

• Continued to monitor legislation in the House and Senate.

Medical Records Confidentiality

• Secured huge changes in a regulation that will dramatically improve companies' ability to perform research. These include changes that conform to what BIO has sought for five years in how the government regulates the use of de-identified information.

Religious Leaders

• Held three meetings across the country about stem cells.

• Secured Bob Edgar, general secretary of the National Council of the Churches of Christ, as a plenary speaker at BIO 2002.

• Conducted a bioethics session featuring religious leaders at BIO 2002.

David Heyman, executive director of the World Health Organization; J. Leighton Read, a general partner of Alloy Ventures; and Una Ryan, CEO of AVANT Immunotherapeutics, chat between sessions at the Partnering for Global Health Forum.

Global Health

• Held a partnering meeting that attracted 400 people, including representatives of the Bill & Melinda Gates Foundation, the National Institutes of Health, the Department of Defense, private sector companies and all the major public-private partnerships working on global health issues. Plenary speakers included Dr. Elias Zerhouni, NIH director; Dr. Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases; Dr. Richard D. Klausner, executive director of global health for the Bill & Melinda Gates Foundation; and Richard Feachem, executive director of the Global Fund to Fight AIDS, Tuberculosis and Malaria.

Protection of Human Subjects

• Advocated BIO's pro-patient, pro-research position with members of Congress and officials in federal agencies.

Company Bioethics Programs

• Encouraged individual companies to undertake bioethics activities such as adopting a statement of ethics or sponsoring a lecture in their communities.

• Worked with Georgetown University, the University of Virginia and Johns Hopkins University to develop materials that senior management can use.

• Conducted a session at BIO 2002 on bioethics in the boardroom.

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