At this time there are at least 30 individuals who have stepped forward to tell of similar stories. However the Alpha 1 Association fears that there are thousands that are afraid to be tested fearing genetic discrimination to themselves and their families. The Coalition for Genetic Fairness is an alliance of civil rights, consumers and lay advocacy organizations like the Alpha-1 Association, created to urge Congress to pass comprehensive federal legislation outlawing genetic discrimination. Susannah Baruch, of the National Partnership of Women and Families, gave testimony on July 20thy to the Senate on the urgent need for federal legislation. Current federal and state laws do not provide the protections needed to prevent employers and insurers from denying health coverage or job opportunities on the basis of genetic information.
Federal legislation prohibiting genetic discrimination is long overdue.
Legislation must prohibit both health insurers AND employers from collecting predictive genetic information and from using it to discriminate in the health care system and the workplace. Legislation must provide individuals who experience genetic discrimination the right to seek redress through legal action, with access to meaningful remedies. Legislation must ensure that those entities holding genetic information about individuals will not disclose it to third parties without the permission of individuals. There are ethicists, scholars, physicians, lawmakers, industries and consumers all over the country who are watching as the genetic discrimination issue unfolds. There is a groundswell of grassroots activity in all 50 states demanding protection.