DOEGenomes.org
Human Genome Project Information  Genomics:GTL  Microbial Genome Program  home
-
skip navigation
Home Site Index Home
What's New
About the HGP Home Ethical, Legal, and Social Issues Home
Research Education Medicine Media
Gene Therapy Gene Therapy Privacy Issues and Other Legislation
Gene Testing Gene Therapy Patenting Issues in Genetics Other Ethical, Legal, and Social Issues
Gene Therapy DNA Forensics Courts and the New Genetics
Gene Therapy
Ethical, Legal, and Social Issues

 Subject Index

 Send the url of this page to a friend

News
 What's New
 Meetings Calendar
 Media Guide

Basic Information
 FAQs
 Glossary
 Acronyms
 Links
 Genetics 101
 Publications

About the Project
 What is it?
 Goals
 Progress
 History
 Ethical Issues
 Benefits
 Genetics 101

Medicine &
the New Genetics

 Home
 Gene Testing
 Gene Therapy
 Pharmacogenomics

 Disease Information
 Genetic Counseling

Ethical, Legal,
Social Issues

 Home
 Privacy Legislation

 Gene Testing
 Patenting
 Forensics
 Genetically Modified Food
 Behavioral Genetics
 Minorities, Race, Genetics
 Genetics in Courtroom

Education
 Teachers
 Careers
 Students
 Webcasts Audio/Video
 Images
 Videos
 Chromosome Poster
 Presentations
 Genetics 101
 
Genética Websites en Español

Research
 Home
 Sequencing
 Instrumentation
 Mapping
 Bioinformatics
 Functional Genomics
 ELSI Research
 Recent Abstracts
 US,Intl. Research Sites
 Funding

Publications
 Human Genome News
 Chromosome Poster
 Primer Molecular Genetics
 To Know Ourselves
 Your Genes, Your Choices
 List of All Publications

  ???Search This Site


 Contact Us
 Privacy Statement

 Site Stats and Credits

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 page 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
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

Send the url of this page to a friend


To read pdf files, download the free Acrobat Reader software.

Last modified: Thursday, September 16, 2004

Home * Contacts * Disclaimer

Base URL: www.ornl.gov/hgmis

Office of Science Site sponsored by the U.S. Department of Energy Office of Science, Office of Biological and Environmental Research, Human Genome Program