Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 40

Employment Family Questions may arise about how genetic test results could affect your job, and whether current or prospective employers can or should know this information. You don’t have to disclose your (or your family members’) genetic status, and, in the U.S., the Genetic Information Nondiscrimination Act (GINA) makes it illegal for an employer to use your genetic data to make work-related decisions (e.g., hiring, promotion or termination). Getting genetic testing may mean learning more not only about yourself, but also about your family. If you find out you have a genetic mutation that increases Parkinson’s risk, for example, you may wonder about your children’s or siblings’ risk as well. A genetic counselor can discuss these scenarios and help you create a plan to communicate results to your family, if you decide you want to do so. However, GINA does have a few limitations — it does not apply to employees of the military, federal government or companies with fewer than 15 employees. And GINA has exceptions, such as instances in which an employer is legally allowed to know a person’s genetic information. Still, even if they know your status, employers cannot use the information to discriminate. For more on GINA and how it may apply to you, visit ginahelp.org and talk with a genetic counselor. (See “What Is a Genetic Counselor?” pg. 37.) Cost Insurance GINA also applies to the majority of health care insurers — they cannot raise premiums or deny coverage, for example, based on your or your family members’ genetic status. However, the law does not extend to long-term care, life or disability insurances. You may want to think about whether you might need these types of coverage before proceeding with genetic testing. 38 The cost of genetic testing can range from hundreds to sometimes thousands of dollars depending on how it is performed, how detailed it is and what type of insurance coverage you have. Genetic testing can be done through research studies, online services or your doctor’s office. When testing is part of research, there usually is no cost to you. Some online services offer basic testing for just over a hundred dollars. If recommended by your physician, at least part of the cost may fall to you, so you’ll want to check with your insurance company ahead of time. Health insurance may cover associated genetic counseling, but you could be responsible for a portion of those costs as well. Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families