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Societal Concerns Arising from the New Genetics

Genomics and Its Impact on Science and Society: The Human Genome Project and Beyond

Critical Policy and Ethical Issues
Since its inception, the Human Genome Project has dedicated funds toward identifying and addressing the ethical, legal, and social issues surrounding the availability of the new data and capabilities. Examples of such issues follow.*

  • Privacy and confidentiality of genetic information. Who owns and controls genetic information? Is genetic privacy different from medical privacy?
  • 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?
  • Psychological impact, stigmatization, and discrimination due to an individual's genetic makeup. How does personal genetic information affect self-identity and society's perceptions?
  • Reproductive issues including adequate and informed consent and the use of genetic information in reproductive decision making. Do healthcare personnel properly counsel parents about risks and limitations? What are the larger societal issues raised by new reproductive technologies?
  • Clinical issues including the education of doctors and other health-service providers, people identified with genetic conditions, and the general public; and the implementation of standards and quality-control measures. How should health professionals be prepared for the new genetics? How can the public be educated to make informed choices? How will genetic tests be evaluated and regulated for accuracy, reliability, and usefulness? (Currently, there is little regulation.) How does society balance current scientific limitations and social risk with long-term benefits?
  • Fairness in access to advanced genomic technologies. Who will benefit? Will there be major worldwide inequities?
  • Uncertainties associated with gene tests for susceptibilities and complex conditions (e.g., heart disease, diabetes, and Alzheimer's disease).Should testing be performed when no treatment is available or when interpretation is unsure? Should children be tested for susceptibility to adult-onset diseases?
  • Conceptual and philosophical implications regarding human responsibility, free will vs genetic determinism, and concepts of health and disease. Do our genes influence our behavior, and can we control it? What is considered acceptable diversity? Where is the line drawn between medical treatment and enhancement?
  • Health and environmental issues concerning genetically modified (GM) foods and microbes. Are GM foods and other products safe for humans and the environment? How will these technologies affect developing nations' dependence on industrialized nations?
  • Commercialization of products including property rights (patents, copyrights, and trade secrets) and accessibility of data and materials. Will patenting DNA sequences limit their accessibility and development into useful products?

*For more information, see Ethical, Legal, and Social Issues

The online presentation of this publication is a special feature of the Human Genome Project Information Web site.

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