In an insightful piece published in the Berman Institute Bioethics Bulletin, a publication of the Johns Hopkins Berman Institute of Bioethics, Leila Jamal addresses many of the ethical issues that ought to permeate public discussion in the wake of Angelina Jolie’s editorial. Ms. Jamal points out that it’s often difficult to correlate a particular genetic testing result with a specific probability of risk – geneticists have this difficulty with BRCA testing and many other genetic tests. Furthermore, those who undergo genetic testing may still face discrimination based on their results, including life-insurance purchases. And finally, the prohibitive cost and Myriad Genetics’ monopoly on BRCA testing should be of serious concern to both the public and policy makers.
Ms. Jamal is a genetic counselor and a doctoral candidate in Bioethics and Health Policy at the Johns Hopkins Berman Institute of Bioethics. She also serves on the BioTrust Ethics Team at Genetic Alliance, and therefore has contributed greatly to the ethical underpinning of Registries for All. The whole Reg4ALL team stands behind her position that those who “work in bioethics and health policy should feel compelled to seek policy changes that will make meaningful and informed decisions like Angelina Jolie’s a plausible reality for all who must confront such difficult circumstances.”
Read Leila’s entire piece here.