Role of the Genetic Counselor


2009

Contributed by Jill Goldman, MS MPhil and Jennifer Williamson, MS

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 take into account their culture, values and social situation.  Genetic counselors assist families in finding literature, support groups and other resources.   Referrals are made to a genetic counselor, if a genetic condition is suspected, 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 individual 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 its own decisions concerning genetic testing.  Other concerns addressed include communication between family members, research opportunities and referrals for help.

Top

We use cookies to give you the best possible experience with our website. These cookies are also used to ensure we show you content that is relevant to you. If you continue without changing your settings, you are agreeing to our use of cookies to improve your user experience. You can click the cookie settings link on our website to change your cookie settings at any time. Note: The MDS site uses related multiple domains, including mds.movementdisorders.org and mds.execinc.com. This cookie policy only covers the primary movementdisorders.org and mdscongress.org domain. Please refer to the MDS Privacy Policy for information on how to configure cookies for all other domains on the MDS site.
Cookie PolicyPrivacy Notice