Medical Research and Education: Ethics Association of American Universities April 22, 2002 Francis S. Collins, M.D., Ph.D.

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Presentation transcript:

Medical Research and Education: Ethics Association of American Universities April 22, 2002 Francis S. Collins, M.D., Ph.D.

Ethical, Legal, and Social Implications An integral component of the Human Genome Project

Uterine Cancer 48 Uterine Cancer 48 Colon Cancer 56 Colon Cancer 56 Colon Cancer 51 Colon Cancer 51

Can research protocols continue to be developed and implemented that achieve the highest standards of informed consent and ethical conduct?

NIH RFA: Human Subjects Research Enhancement Program Supports activities that enhance the protection of research subjects Available to institutions that support significant amounts of NIH-funded clinical research $28.5M to support up to 174 grants Application deadline May 7, 2002

Mutation found in those with cancer Uterine Cancer 48 Uterine Cancer 48 Colon Cancer 56 Colon Cancer 56 Colon Cancer 51 Colon Cancer 51

Will effective legislative solutions to genetic discrimination be found?

“Genetic discrimination is unfair to workers and their families… To deny employment or insurance to a healthy person based only on a predisposition violates our country's belief in equal treatment and individual merit.” President George W. Bush June 23, 2001

Identifying Those At Risk Uterine Cancer 48 Uterine Cancer 48 Colon Cancer 51 Colon Cancer 51 Colon Cancer 56 Colon Cancer 56

Comparative Genomics Proteomics Functional Genomics Fulfilling the Promise of Genomics for Better Health Medical Genomics

The major contributing genes for diabetes, heart disease, cancer, mental illness, Alzheimer’s and Parkinson’s disease, asthma, etc. will be identified within the next 5 – 7 years.

Can health care providers and the public become genetically literate in time?

National Coalition for Health Professional Education in Genetics (NCHPEG) Founded by NHGRI, AMA, ANA Now has 120 member organizations

Will the benefits of the advances in genetics only be available to a privileged few?

Will knowledge of human variation reduce prejudice, or increase it?

Will we arrive at consensus about the limits of genetic technology for trait enhancement?

Will we succumb to genetic determinism, neglecting the role of the environment, and undervaluing the power of the human spirit and our need for God?