medical research and education: ethics association of american universities april 22, 2002 francis...

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

48

UterineCancer

48

ColonCancer

56

ColonCancer

56

ColonCancer

51

ColonCancer

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 Mutation found in those with cancer

UterineCancer

48

UterineCancer

48

ColonCancer

56

ColonCancer

56

ColonCancer

51

ColonCancer

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 RiskIdentifying Those At Risk

UterineCancer

48

UterineCancer

48

ColonCancer

51

ColonCancer

51

ColonCancer

56

ColonCancer

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?

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.