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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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UterineCancer
48
UterineCancer
48
ColonCancer
56
ColonCancer
56
ColonCancer
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ColonCancer
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 Mutation found in those with cancer
UterineCancer
48
UterineCancer
48
ColonCancer
56
ColonCancer
56
ColonCancer
51
ColonCancer
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 RiskIdentifying Those At Risk
UterineCancer
48
UterineCancer
48
ColonCancer
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ColonCancer
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ColonCancer
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ColonCancer
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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 HealthProfessional 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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Albert Schweitzer
We must not allow our technology
to exceed our humanity.