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International Parkinson and Movement Disorder Society
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Role of the Genetic Counselor

Genetic counselors are qualified health professionals who provide information about diseases that run in families, explain how much risk a family member has for an inherited condition and whether or not genetic testing can provide answers. They offer psychosocial support to individuals and families concerned about genetic risk and help them make decisions that consider their culture, values, and social situation. Genetic counselors assist families in finding literature, support groups, and other resources. If a genetic condition is suspected, referrals are made to a genetic counselor for informational counseling, whether or not the individual elects to undergo a genetic test.

Genetic counseling is available for many movement disorders, not limited to the following:

  • Ataxia
  • Dystonia
  • Myoclonic Dystonia
  • Huntington's disease
  • Parkinson's disease
  • Frontotemporal Dementia and related conditions
  • Mitochondrial diseases  

The genetic counselor and the individual/family discuss all known causes of the condition, including any genetic causes. A medical family history will be constructed [drawn pedigree] and used to assess the risk of a hereditary condition in each case. The genetic counselor will discuss whether genetic testing is available, what the testing can and cannot show, and reasons for and against doing the testing. The individual and family concerns about and reasons for testing are explored. The genetic counselor will help the individual/family make decisions concerning genetic testing. Other concerns addressed include communication between family members, research opportunities, and referrals for help.

Originally contributed by Jill Goldman, MS MPhil and Jennifer Williamson, MS (2009); Maintained by the Health Professionals SIG.

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