Advocating for Quality Health Care:

In medicine, before you undergo any procedure, surgery or course of treatment, something called "informed consent" must be obtained. This means that you understand the various aspects, risks, and benefits of the procedure before undergoing it. Informed consent is designed to protect both you and your doctor, by ensuring you both have enough information to make decisions about your care. You will need to provide informed consent for IVF, genetic testing (PGD), and recommended confirmation testing (PND), which are three separate procedures. Surveys of PGD clinics in the United States have shown that not all PGD clinics offer separate forms of informed consent for each element of the procedure. It is your right to demand that information be supplied to you in a comprehensive manner, and should you desire, you may request that separate meetings be dedicated to each procedure involved in PGD. During these meetings you may be informed of laws and guidelines regarding genetic testing. Usually genetic information is protected under GINA (Genetic Information Non-Discrimination Act) and as such genetic testing requires oversight and regulation with regard to privacy of personal information. In addition, in the United States, genetic testing guidelines discourage genetic testing for BRCA1/2 before age 18. PGD and prenatal carrier confirmation testing (PND) allow you to have genetic information about your future child long before they are 18 years of age.