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Bioethics Symposium

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Genes and Disability: Defining Health and the Goals of Medicine

Genes and Disability: Defining Health and the Goals of Medicine
March 1, 2002
Room 103

Successful efforts to map the human genome and rapid advances in genetic testing and therapies raise serious issues regarding the use of genetic knowledge in understanding human difference, particularly that form of difference we call "disability." The relationship of genes to disability, health, and human well-being in general are topics that demand thoughtful analysis, a sharing of viewpoints, and even vigorous debate. This conference brings together some of the country's foremost scholars in the fields of law, medicine, ethics, public health, psychology, history, and sociology to engage in that process.

The conference will explore ethical, philosophical, and legal questions that arise at the intersection of genes and disability. When and why are certain genes "undesirable" and who decides and how? When does that "undesirability" constitute a "disability" for the person who carries that gene and what are the implications of deeming a genetic condition a disability? When does a genetic condition mean that a person's potential offspring are unhealthy and thus appropriately the object of medical attention?

These questions will be addressed in a series of panel presentations and discussions on such subjects as parental and societal obligations in regard to reproductive technologies, the relevance of eugenic precedents to current efforts at genetic "improvement," and the policies of governments and insurance carriers to encourage and pay for prenatal testing and the various treatment options for genetic conditions.

 

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