RESOLUTION TO SUPPORT FEDERAL LEGISLATION PROHIBITING GENETIC DISCRIMINATION
WHEREAS, the Philadelphia Bar Association has a long-established history of supporting federal, state and local legislation with the goal of prohibiting discrimination and protecting the rights of victims of discrimination;
WHEREAS, the Human Genome Program of the U.S. Department of Energy has defined genetic discrimination as "prejudice against those who have or are likely to develop an inherited disorder";
WHEREAS, the Health Insurance Portability and Accountability Act ("HIPAA") is a federal law that protects people with group health insurance against being denied insurance, having their insurance cancelled, or having their rates individually increased due to any pre-existing condition;
WHEREAS, for HIPAA protection to apply, an individual must have had health insurance for at least twelve (12) months without a lapse of sixty-three (63) days or longer;
WHEREAS, although HIPAA prohibits insurance companies operating in the group insurance market from discriminating against an individual based on any medical condition, it does not prohibit the insurance company from denying coverage to or increasing the rates of the entire group based on the medical records of a member of the group;
WHEREAS, HIPAA does not prevent insurance companies from requiring applicants to reveal whether they have had genetic testing in order to enroll in their group plans, even though the companies are not allowed to use this information against such applicants;
WHEREAS, HIPAA does not provide protection to those who have individual health insurance plans;
WHEREAS, discrimination against federal employees based on genetic information is prohibited by an Executive Order signed by President Clinton;
WHEREAS, a report issued in 1998 by the U.S. Department of Labor points out that since some genetic traits are found more frequently in specific racial or ethnic groups, genetic discrimination could disproportionately affect persons in these groups;
WHEREAS, a 1996 survey of individuals at risk of developing a genetic condition and parents of children with specific genetic conditions identified more than 200 cases of genetic discrimination among the 917 people who responded and who reported instances of discrimination by insurance companies, employers, and other organizations that use genetic information;
WHEREAS, a study of attitudes toward genetic counseling and testing in families at high risk for hereditary colon cancer showed that 39% of those surveyed listed fear of genetic discrimination as the most important reason for choosing not to pursue it, and there is also reported fear of insurance discrimination by those deciding whether or not to have genetic testing for risk of breast cancer;
WHEREAS, as the study of the human genome advances, hereditary factors may be found to contribute to most common diseases, including diabetes, cancer, heart disease, mental illness, hypertension, and many other diseases and disorders;
WHEREAS, even those choosing not to have genetic testing may experience genetic discrimination since family medical history could be considered to be genetic information which is used as the basis for genetic discrimination;
WHEREAS, current laws provide some protection, but leave many unfilled gaps in protection against genetic discrimination;
WHEREAS, in May, 2003, bipartisan legislation prohibiting health insurance and employment discrimination on the basis of genetic information and providing confidentiality protections was introduced in both houses of Congress;
WHEREAS, in October, 2003, the Senate passed the bill introduced in its chamber by a 95-0 vote, but no action has been taken by the House of Representatives;
WHEREAS, this legislation is supported by a wide range of health and medical professional organizations, and other interested organizations.
NOW THEREFORE, BE IT RESOLVED, that the Philadelphia Bar Association urges the United States Congress to enact legislation to prohibit genetic discrimination.
AND, BE IT FURTHER RESOLVED, that the Chancellor or his/her designee be authorized to take whatever steps are necessary to effectuate this resolution.
PHILADELPHIA BAR ASSOCIATION
BOARD OF GOVERNORS
ADOPTED: NOVEMBER 23, 2004