Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 39

What Is a Genetic Counselor? Genetic counselors are professionals with expertise in both medical genetics and counseling. They can provide education and emotional support to people who are considering or have undergone genetic testing for any reason: people who have Parkinson’s disease ( PD) o r are at risk for the disease ( because of a genetic mutation or family history of PD), or individuals who are just curious about their genetics. Genetic counselors can help you explore the pros and cons of genetic testing, and what genetic testing can and can’t tell you and your loved ones. They can offer practical advice and assistance, such as comprehensive resources on the Genetic Information Nondiscrimination Act or tips on how to talk with your loved ones about Parkinson’s. (See “What to Consider before Genetic Testing,” on pg. 36.) Jennifer Verbrugge, MS, CGC, LGC, a certified genetic counselor at Indiana University who works with participants in MJFF’s Parkinson’s Progression Markers Initiative biomarker study, says, “ The term ‘counseling’ can have negative connotations, but genetic counseling is primarily a discussion about inherited aspects of disease and a place for you to ask questions before and after genetic testing is performed.” When meeting with a genetic counselor, you can expect to go over much more than your genetic test results and their potential implications for you and your family. You’ll also review: She adds, “Anyone who’s considering genetic testing — whether it’s solely for their own knowledge or to participate in a genetic research study — could benefit from sitting down with a genetic counselor.” + + Your family’s history of Parkinson’s, whether anyone has had genetic testing, and which, if any, mutations they carry; and + + Basic information on Parkinson’s; + + Details on Parkinson’s genetics, including what is and isn’t currently known, and how different mutations are inherited; + + Specific questions you have. Common concerns often center on an individual’s and family members’ exact PD risk and what can be done to mitigate this. Research in this area is active, but doctors don’t yet have definitive answers. You can prepare for your visit by gathering any genetic information from your family that you may have. Genetic counselors are primarily interested in older relatives (e.g., g randparents, parents, aunts, uncles and older siblings) but information about younger siblings and children can be important too. You should also write down the main concerns you’d like to address. Your doctor can refer you to a genetic counselor, or you can find one in your area by searching online. The National Society of Genetic Counselors maintains a directory of counselors at findageneticcounselor.com. Be sure to look for counselors who specialize in adult genetics or neurogenetics. Or, if you’ve gotten testing on your own, through an online service for example, you may want a counselor with expertise in “at-home” or “direct-to-consumer” testing. Watch more of Jennifer’s story at michaeljfox.org/ParticipantPack. Chapter 3 — Genetics and Parkinson’s Research 37