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Presentation on DNA, Central Dogma &
Evolution 2/19/03
Human Genome Project (HGP)
Karen, Karin, Kiera, Kim
International effort to characterize the human
genome:
- Sponsor: U.S. Department of Energy (DOE) Office of
Energy Research
- Proposed as a 15 Year effort, multi-billion dollar
effort to understand the health effects of radiation and
other harmful by-products of energy production.
- Multi-disciplinary effort involves:
- NIH National Institutes of Health
- Universities
- DOE owned national Labs (ORNL=Oak Ridge National
Lab under private management)
- Private Sector (Celera Genomics Corp &
others)
Background & Timeline:
- 1946 - DOE has assumed responsibility for researching
the impact of atomic weapons and energy sources on human
health
- 1984 - Original inspiration at Alta Summit. DOE
sponsored meeting to review knowledge of the impact of
atomic bomb in Nagasaki and Hiroshima on human genetics
and health.
- 1987 - Recommendation by Health and Environmental
Research Advisory Committee (HERAC) to commit to a large
multi-year national effort.
- 1990 - The 15 Year Human Genome Project formally
begins.
- 1999 - First Human Chromosome Completely
Sequenced
- 2001 - Initial Working Drafts Sequence published
independantly by HGP and Private Sector company Celera
Genomics.
Short Term Goals:
- Physical Map of the human Genome. DNA segments in
order.
- Locate genes and other markers on the map.
- Produce and distribute cloned DNA sequences to
promote further research.
- Develop new techniques for large-scale DNA
mapping
- Develop new methods for characterizing and locating
genes
- Establish computer facilities and develop computer
data bases for the storage, retreival and dissemination
of genome data.
Long Term Goals:
- Obtain a base sequence for each of 24 reference human
chromosomes
- Data Bank. Make DNA sequencing technology readily
available to search for disease-related variations and
biological comparison.
- Encourage collaboration throughout U.S. and
world.
- Support research by variety of private and public
institutions.
- Provide oversight of policy, strategy, and
funding.
- Review of Ethical, Legal, and Social Issues. ELSI.
3-5% of total funding.
Key Issues Identified by ELSI:
- Fairness in use of genetic information. Insurers,
employers...
- Privacy and Confidentiality. Who owns and controls
information
- Psychological impact and stigmatization due to
genetic differences.
- Reproductive Issues (informed consent, decision
making)
- Clinical Issues. Education of health service,
patients, and public
- Uncertainties associated with gene tests for
susceptibilities and complex conditions.
- Conceptual and Philosophical implications regarding
human responsibility, (free will vs genetic
determinism).
- Health and Environmental Issues (Modified food,
microbes)
- Commercialization of Products (Patents, copyrights,
data)
Other Issues and Dilemmas:
- Should the Department of Energy oversee a research
project that could negatively impact future development
of energy resources? Conflict of Interest.
- A Publicly sponsored organization has potential to
gain vast amounts of funding, but does it have the
appropriate frame of reference to efficiently complete
research? Celera example.
- Do we understand enough to unleash this monster? By
promoting unhindered research and open sharing of
technology, are we opening Pandora's box before we know
what is in it and have created any global controls or
agreed upon guidelines?
What type of experts and/or stakeholders need to be
consulted?:
- Biological, Physical, Chemical, Environmental Science
experts.
- Legal experts
- Social experts
- Medical practitioners
- Educators
- Business representatives
- International representatives from all these
fields
- General public
What are the values involved?
- No harm to current or future generations of
humans
- No harm to diversity of other life forms and/or
global environment
- Pursuit of basic Knowledge
- Potential for Improved Quality of Life
What are the possible solutions?
- Create International Ethics, Legal, Social Issue
committee (DONE)
- Promote education and debate of the potential and
risks for genetic knowledge throughout society at
large
- Ensure that all research funded by U.S. government
resources meets guidelines.
- Remove HGP and Biological and Environmental Research
from the oversight of the DOE.
How should the decision making process be
organized?
- International Committee of dedicated private and
public experts to define acceptable high level
guidelines.
- Guidelines to be recommended to International Body
(possibly United Nations?)
- Acceptance by international community
- National oversight of specifics of adherence to these
guidelines.
- Global organization to oversee adherence at top
level.
Relevant Links:
http://
www.genome.gov
http://
www.ornl.gov/hgmis/elsi/elsi.html
Patents and Genetics
Guideline for granting U.S. patents on
genes:
http://www.uspto.gov/web/offices/com/sol/notices/utilexmguide.pdf
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