Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 41

Key Takeaways Genetics and Parkinson’s Clinical Research Genetic research is immensely important to our pursuit of a Parkinson’s cure. Studies need people with and without Parkinson’s genetic mutations to help us learn what may cause this disease and how we may stop it. Before participating in genetic research, though, thoroughly think through the benefits and risks, and talk to a genetic counselor and study team to get answers to all of your questions. + + Genetic research volunteers can help us uncover the many unknowns about Parkinson’s. Much of our core knowledge about the underlying biology of Parkinson’s disease (PD) comes from studying genetics. Participating in genetic research can help scientists illuminate more about disease causes and develop treatments to slow or stop it. There are opportunities for all type of volunteers — people both with and without PD, as well as those with and without PD- linked genetic mutations. + + The future of Parkinson’s treatment may be precision medicine — led by genetics. In the future, doctors may prescribe treatments based on one’s genetics rather than one’s symptoms (as they do now for people with certain cancers). Drug makers are currently testing therapies that may slow PD progression in people with genetic types of PD. + + Learning your genetic status is a personal decision; genetic counselors can help you navigate this choice. Some people may not want to learn their Parkinson’s genetic status because we don’t yet have therapies to slow or stop disease progression and this knowledge does not impact PD care. Others may want to know so they can participate in specific research studies. Before undergoing genetic testing, talk to your family and perhaps also a genetic counselor. Counselors can help you weigh the pros and cons and give practical advice and assistance. + + Laws protect from you from genetic discrimination by your employer or insurance provider. In the United States, the Genetic Information Nondiscrimination Act provides protections from, for example, being fired from a job or having insurance premiums raised. Other countries may have similar laws. Before learning your status — through a research study or other means — look closely into the potential impact and speak with a genetic counselor. Chapter 3 — Genetics and Parkinson’s Research 39