nation of efforts among various groups need to occur (11), including partnerships and coordinated efforts among various agencies of the federal government; federal, state and local agencies; the public and private sectors; and the public health, medicine and academic sectors, with various community and consumer involvement.
One example of such partnership is annual national meetings on genetics and public health. CDC, the Health Resources and Services Administration (HRSA), the National Human Genome Research Institute, and the Association of State and Territorial Health Officials (ASTHO) and affiliates held the First Annual Conference on Genetics and Public Health in Atlanta, Georgia, in May of 1998 (47). This first meeting addressed the public health opportunities and challenges presented by advances in human genetics research. The conference sought to establish awareness about the scope of and process for integrating advances in human genetics into public health programs and strengthening partnerships for disease prevention and health promotion efforts. The conference was attended by nearly 400 people from federal, state, academic, consumer, community, and industry organizations, representing 41 states and several European countries. The second annual meeting in December, 1999, is cosponsored by ASTHO in collaboration with the Maryland Department of Health and Johns Hopkins University School of Hygiene and Public Health. These meetings will provide crucial gatherings for exchanging information and building partnerships among various groups.
II. Ethical, Legal and Social Issues
As the Human Genome Project was being planned, there was widespread recognition that the information gained from sequencing the human genome would have profound implications for individuals, families and society. A number of complex ethical, legal and social issues can arise around the integration of genetic technologies in practice, and the use and interpretation of genetic information. To address these issues, the Ethical, Legal and Social Implications (ELSI) Program was established as an integral part of the Human Genome Project (48-49). The program has provided leadership in scientific research by identifying, analyzing and addressing the ethical, legal and social implications of human genetics research as basic scientific discoveries were made. The overarching aims of the ELSI Program have been to assure that: (a) genetic research is conducted in an ethically sound manner; (b) genetic technologies and information are appropriated integrated into clinical and non-clinical settings; (c) genetic information is interpreted accurately and used appropriately; and (d) professionals and the public become more "genetically literate."
Over the past decade, emphasis has been placed on privacy and fairness in the use and interpretation of genetic information. Privacy and fairness issues include (a) privacy and confidentiality of genetic information, including issues of ownership and control of genetic information and consent to disclosure and use of genetic information; (b) fair use of genetic information (e.g., related to insurance and employment); (c) individual, family and group psychological interactions and stigmatization related to genetic information; (d) cultural differences in the uses of genetic information; and (e) the impact of genetic information on the concept of disability (48).
Another ELSI research emphasis has been addressing issues related to genetic research, particularly research in which the risks and benefits to participants is not fully known. Specific topics in this area have included the elements of informed consent for individuals participating in genetics research; the role of institutional review boards in genetics research; policies related to effectively maintaining privacy and confidentiality of genetic information about individuals and families participating in genetics research; and issues raised by commercialization of the products from human genetics research (e.g., ownership of tissue and products, patents, etc..).
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