GINA ACT: The Ethical and Legal Dilemma of BRCA

Host: Lisa Mazzullo, MD Guest: Joanna Rudnick Guest: Julie Burger, JD Genetic Discrimination- There should be a law against it, and we’re working on it; The Genetic Information Non Discrimination Act (GINA). What is the ethical and legal dilemma of BRCA 1 / 2 testing? 30,000 women have tested positive for brca1 or 2 but an estimated 250,000 women are suspected to be positive as well but are afraid to be tested due to possible genetic discrimination. The reality of health insurance, disability and employment discrimination due to genetic testing is daunting and is preventing women from taking action against the possible cancer diagnosis in their future. Julie Burger shares with us the legal dilemma and frustrations of genetic information discrimination. Additional References: Coalition For Genetic Fairness: www.geneticfairness.org Halsey Lea, d, et al Ethical Issues in Genetic Testing, J Midwifery Womens Health, 2005; 50 (3); 234-40. - Genomics and personalized Medicine act, 2006, Obama http://en.wikipedia.org/wiki/genetic_information_nondiscrimination_act - www.genome.gov/24519851- discusses the nuances of the gina act.