medical research and education: ethics association of american universities april 22, 2002 francis...
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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
UterineCancer
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UterineCancer
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ColonCancer
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ColonCancer
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ColonCancer
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ColonCancer
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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 Mutation found in those with cancer
UterineCancer
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UterineCancer
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ColonCancer
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ColonCancer
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ColonCancer
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ColonCancer
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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 RiskIdentifying Those At Risk
UterineCancer
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UterineCancer
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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
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?
http://www.nhgri.nih.gov/educationkit
National Coalition for HealthProfessional Education in
Genetics (NCHPEG)
Founded by NHGRI, AMA, ANA
Now has 120 member organizations
www.nchpeg.org
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?
Albert Schweitzer
We must not allow our technology
to exceed our humanity.