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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. For more on this topic, see the Privacy and Legislation page in this ELSI suite. Privacy and confidentiality of 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.
For more on this topic, see the Minorities,
Race, and Genetics page in this ELSI suite. 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.) 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. 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. 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. 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.
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
Articles Genetic Privacy and Discrimination
Gene Testing
Gene Therapy
Genetics in the Courtroom
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Last modified: Thursday, September 16, 2004
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