Ethical, Legal, and Social Issues (ELSI) of the Human Genome Project
The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) have devoted 3% to 5% of their annual Human Genome Program budgets toward studying the ethical, legal, and social issues (ELSI) surrounding availability of genetic information. This represents the world's biggest bioethics program, which has become a model for ELSI programs around the world.
ELSI Issues
Some ethical, legal, and social issues (ELSI) raised by the increased availability of genetic information:
•Fairness in the use of genetic information by insurers, employers, courts, schools, adoption agencies, law enforcement, and the military, among others.
Who should have access and how will it be used?
•Privacy and confidentiality of genetic information
Who owns and controls it?
•Psychological impact and stigmatization due to an individual's genetic differences
How does the information affect an individual and society's perceptions of that individual?
•Genetic testing of an individual for a specific condition due to family history (prenatal, carrier, and presymptomatic testing); population screening (newborn, premarital, and occupational)
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?
•Reproductive issues including informed consent for procedures, use of genetic information in 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?
•Gene therapy which may someday be used to treat, cure, or prevent genetic disorders
What is normal and what is a disability or disorder, and who decides?
Are disabilities diseases? Do they need to be cured or prevented?
Does searching for a cure demean the lives of individuals presently affected by disabilities?
•Genetic enhancement includes using gene therapy to supply a characteristic such as height, that a parent might want in a child but which does not involve the treatment or prevention of a disease
What safety and ethical questions does this raise?
If this became common practice, how would it affect the diversity of the gene pool?
•Fairness in the use of genetic technologies
Who will have access to these expensive technologies?
Who will pay for their use?
•Clinical issues including education of health service providers, patients, and the general public; 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
•Commercialization of products: Issues include property rights (patents, copyrights, and trade secrets) and accessibility of data and materials.
Who owns genes and other pieces of DNA?
•Conceptual and philosophical implications regarding human responsibility, free will versus genetic determinism, and concepts of disease and health.
Do someone's genes make them behave in a particular way? Can people always control their behavior?
What is considered acceptable diversity?
A perspective about the Human Genome Project's possible impact on individuals with mental retardation and their families is presented
here
.
http://www.ornl.gov/hgmis/resource/elsi.html
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