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Medical Research and Education: Ethics Association of American Universities April 22, 2002 Francis S. Collins, M.D., Ph.D.
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Ethical, Legal, and Social Implications An integral component of the Human Genome Project
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Uterine Cancer 48 Uterine Cancer 48 Colon Cancer 56 Colon Cancer 56 Colon Cancer 51 Colon Cancer 51
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Can research protocols continue to be developed and implemented that achieve the highest standards of informed consent and ethical conduct?
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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
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Mutation found in those with cancer Uterine Cancer 48 Uterine Cancer 48 Colon Cancer 56 Colon Cancer 56 Colon Cancer 51 Colon Cancer 51
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Will effective legislative solutions to genetic discrimination be found?
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“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
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Identifying Those At Risk Uterine Cancer 48 Uterine Cancer 48 Colon Cancer 51 Colon Cancer 51 Colon Cancer 56 Colon Cancer 56
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Comparative Genomics Proteomics Functional Genomics Fulfilling the Promise of Genomics for Better Health Medical Genomics
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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.
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Can health care providers and the public become genetically literate in time?
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http://www.nhgri.nih.gov/educationkit
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National Coalition for Health Professional Education in Genetics (NCHPEG) Founded by NHGRI, AMA, ANA Now has 120 member organizations www.nchpeg.org
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Will the benefits of the advances in genetics only be available to a privileged few?
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Will knowledge of human variation reduce prejudice, or increase it?
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Will we arrive at consensus about the limits of genetic technology for trait enhancement?
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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?
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