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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.
From a medical, ethical and psychological perspective, Joanna Rudnick has faced heart-wrenching choices about childbearing, life-altering surgeries, preventive lifestyle changes, and much more. Young women like Ms. Rudnick, who possesses BRCA gene mutations, look to their healthcare providers for guidance through this harrowing journey. How can we help? She talks with host Dr. Lisa Mazzullo about the difficult decisions of genetic testing, and the challenges of treating for disease based on genetic projections.