Advocacy and Genetics Conference 2006

This conference was an opportunity for the public to meet with experts to learn about and discuss some of the most pressing issues that are emerging as genetics becomes more relevant in all of our lives. Genetic breakthroughs have had far-reaching implications for issues as diverse as: how we define race; genetic discrimination and privacy; genetic identity; and the role of the pharmaceutical industry in advocacy and entrepreneurship. The conference was organized as a series of plenary sessions, each of which was followed by open dialogue between presenters and conference participants. Through thoughtful and informed discussion, we touched on how advocacy and genetics intersect today and anticipate how these “arenas of engagement” may evolve in the future.

The Health Advocacy Program, the Human Genetics Program, and the Health, Science and Society faculty at Sarah Lawrence College are all committed to actively promoting public engagement in debates and decisions about the nature and use of medical science. The history of eugenics has taught us that the consequences of genetic information and technologies are too important to be the exclusive province of scientists, or of politicians,who seldom understand the science. Scientists, politicians and an informed public must together decide how we construct and use genetic information. This conference was an invitation to professionals and the general public to join discussions about genetics and advocacy that are important for our collective future. The conference was a day of dialogue and debate about these critical questions:

• What are the connections between what science can teach us about genetics and what we do with that knowledge?
• What is the role of public discourse in deciding how genetic information and technologies are used?
• How does the public gain access to scientific knowledge in order to engage in informed debate?
• How can the public be protected from the risks associated with personal genetic knowledge, while at the same time benefiting from its potential?
• What is the role of genetic screening and testing in forming identity;directing resources and interventions; and conducting population-based research? What are the threats to privacy and confidentiality posed by the proliferation of these practices?
• What are the discrepancies between race as defined by genetic science and race as a social/cultural concept?
• What does increasing reliance on genetic information and definitions mean for our personal identity and family life?
• What are the economic consequences of the ever-increasing influence of genetics?