Note: For ELSI research
information, see our ELSI
Research page.
The U.S. Department of Energy (DOE) and the National Institutes of Health
(NIH) devoted 3% to 5% of their annual Human Genome Project (HGP) budgets
toward studying the ethical, legal, and social issues (ELSI) surrounding availability
of genetic information. This represents the world's largest bioethics program,
which has become a model for ELSI programs around the world.
Societal Concerns Arising from the New Genetics
Fairness in the use of genetic information by insurers, employers, courts,
schools, adoption agencies, and the military, among others.
Who should have access to personal
genetic information, and how will it be used?
For more on this topic, see the Privacy
and Legislation page in this ELSI suite.
Privacy and confidentiality of genetic information.
Who owns and controls genetic
information?
For more on this topic, see the Privacy
and Legislation page in this ELSI suite.
Psychological impact and stigmatization due to an individual's
genetic differences.
How does personal genetic
information affect an individual and society's perceptions of that individual?
How does genomic information
affect members of minority communities?
For more on this
topic, see the Minorities,
Race, and Genetics and
Genetic Anthropology, Ancestry,
and Ancient Human Migration pages in this ELSI
suite.
Reproductive issues including adequate informed
consent for complex and potentially controversial procedures, use of
genetic information
in
reproductive decision making, and reproductive rights.
Do healthcare personnel
properly counsel parents about the risks and limitations of genetic
technology?
How reliable and useful
is fetal genetic testing?
What are the larger societal
issues raised by new reproductive technologies?
For more on this topic, see the Gene
Testing page in this ELSI suite.
Clinical issues including the education of doctors and other
health service providers, patients, and the general public in genetic capabilities,
scientific limitations, and social risks; and implementation of standards
and quality-control measures in testing procedures.
How will genetic tests
be evaluated and regulated for accuracy, reliability, and utility?
(Currently,
there is little regulation at the federal level.)
How do we prepare healthcare
professionals for the new genetics?
How do we prepare
the public to make informed choices?
How do we as a society
balance current scientific limitations and social risk with long-term
benefits?
For more on this topic, see the Gene
Testing and Gene
Therapy pages in this ELSI suite.
Uncertainties associated with gene tests for susceptibilities and complex
conditions (e.g., heart disease) linked to multiple genes and gene-environment
interactions.
Should testing be performed when
no treatment is available?
Should parents have the right
to have their minor children tested for adult-onset diseases?
Are genetic tests reliable and
interpretable by the medical community?
For more on this topic, see the Gene
Testing and Gene
Therapy pages in this ELSI suite.
Conceptual and philosophical implications regarding human responsibility,
free will vs genetic determinism, and concepts of health and disease.
Do people's genes make them behave
in a particular way?
Can people always control their
behavior?
What is considered acceptable
diversity?
Where is the line between medical treatment and enhancement?
For more on this topic, see the Behavioral
Genetics page in this ELSI suite.
Health and environmental issues concerning genetically modified
foods (GM) and microbes.
Are GM foods and other products
safe to humans and the environment?
How will these technologies
affect developing nations' dependence on the West?
For more on this topic, see the Genetically
Modified Foods page in this ELSI suite.
Commercialization of products including property rights (patents,
copyrights, and trade secrets) and accessibility of data and materials.
Who owns genes and other
pieces of DNA?
Will patenting DNA sequences
limit their accessibility and development into useful products?
For more on this topic, see the Patenting
page in this ELSI suite.
Webpages in this ELSI Suite
As mentioned above, the U.S. DOE and NIH have devoted a percentage of their
annual HGP budgets toward studying the ELSI issues surrounding the availability
of genetic information. This suite of ELSI pages covers a number of these issues.
Keep in mind as you browse these pages that not all of these topics are
directly related to the HGP. For example, forensics definitely raises some ethical
concerns, but it is not directly related to the HGP --nor are gene testing,
gene therapy, cloning, and behavioral genetics.
Privacy and Legislation
Minorities, Race, and Genetics
Genetic Anthropology, Ancestry, and
Ancient Human Migration
Patenting
Behavioral Genetics
Forensics
Gene Testing
Gene Therapy
Genetics in the
Courtroom
GM Foods, Crops, and Organisms
Minorities and Genomics
Cloning
Articles
Genetic Privacy and Discrimination
Gene Testing
Gene Therapy
Genetics in the Courtroom
Behavioral Genetics
Finding More Information
- HumGen
- a website about the social, ethical and legal aspects of human genetics.
- Center
for Genome Ethics, Law, and Policy at Duke University
- Genetics and Public Policy Center
at Johns Hopkins University
- ELSI Research page (more technical
information on the U.S. HGP ELSI program, including goals, grants and
funding, and ongoing research.
- The DNA Files
is a series of public radio documentaries about genetic research, its
applications, and its impact on our lives. Details available at this
web
site.
- Your
Genes, Your Choices: A booklet describing the Human Genome Project,
the science behind it, and the ethical, legal, and social issues that
are raised by the project. Includes "what if" scenarios good
for starting discussions
- Challenges
of Genome Research for Minority Communities Conference Proceedings
(July 2000)
- ELSI articles from
Human Genome News
- ELSI
Bibliography (publications prior to 1995)
- Links to other ELSI
Websites
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