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Charge of the ELSI Committee

The Committee on Ethical, Legal, and Social Issues (ELSI) of the International Society of Genetic Epidemiology (IGES) shall have the following responsibilities:

  • The Committee shall consider the following issues and propose policy statements for discussion and endorsement by the full membership of the Society:

     

    1. Ethical issues in the conduct of genetic epidemiology research, such as informed consent, disclosure of genetic information to subjects, relatives, third parties, etc.

    2. Legal issues, such as access to medical records for research purposes and protection of confidentiality.

    3. National/cultural disparities in ethics standards and practices, including a philosophical examination of the arguments for universality vs cultural relativity and the justification for perceived differences between countries as they relate to the field of genetic epidemiology.

    4. Implications of genetic epidemiology research for genetic counseling, including the uncertainties and complexities of genetic risk estimates, the frequent lack of population based estimates, the role of environmental modifying factors, and how to deal with new research findings in a counseling situation.

    5. Implications for public policy, such as reproductive freedom and problems of disclosure, discrimination, and access to care resulting from genetic testing information, particularly in countries without a universal health care system.

  • Additional ethical, legal, and social issues relating to the field of genetic epidemiology may also be considered by the Committee at their discretion.

  • The Committee shall develop mechanisms for seeking input from members of the Society and for communicating their deliberations to the membership.  This might include presentations or discussions at the annual meeting, printed or electronic newsletters, internet or telephone conferencing, or formation of additional working groups.

  • The Committee shall seek to establish links with other professional societies or governmental organizations that are addressing related questions.

To accomplish these goals, the Committee shall meet at least once a year at the Society's Annual Meeting, but will also communicate by teleconference, e-mail, and other means more frequently, and will seek opportunities for additional ad hoc meetings of the full committee or subcommittees thereof.

Members of the Committee will be appointed by the President of IGES, who will also serve as a member during the three years of his/her appointment.  Members will be initially appointed for a term of three years, but may continue to serve as long as they remain interested and active.  The Committee should normally comprise 6-12 members, chosen to reflect the international composition of the society, the subdisciplines represented, and the range of views of the Society's members.