Q. What is 23andme?
A. 23andme is a US provider of personal genetics services. For a fee, a person can order a kit online, send in a saliva sample, and receive an analysis of his/her genetic information. Currently, the company is marketing their services to 50 countries, including Canada. (Source: www.23andme.com).  

Q. Can 23andme confirm a Parkinson’s disease diagnosis?
A. NO. Only your physician/neurologist can make a diagnosis. Your doctor considers your medical and family history, physical condition, as well as any clinical and non-clinical symptoms you may be experiencing.

Q. Will privacy be protected for Canadians who participate in 23andme?
A. A. NO. In Canada, there is no legislation that protects Canadians who participate in genetic research or undergo genetic testing. In the United States, Americans are protected under The Genetic Information Nondiscrimination Act (GINA). However, for Canadians, there is potential risk to their privacy as well as insurance or employment implications.

Q. What is the 23andme Parkinson Community Research Project?
A. 23andme has partnered with The Michael J. Fox Foundation and the Parkinson's Institute to launch a research project. The project is seeking 10,000 individuals with Parkinson’s. Participants will be available for ongoing research through online surveys.

Q. Is there a cost to participate in the 23andme Parkinson Community Research Project?
A. No. There is no longer a cost to participate in the 23andme Parkinson Community Research Project.

Q. What standards govern research in Canada?
A. Research in Canada should follow the guidelines set out in: Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, 2010 (www.pre.ethics.gc.ca).

Q. What is being done to protect Canadians against genetic discrimination?
A. Parkinson Society Canada is a member of the Canadian Coalition for Genetic Fairness (CCGF). The Coalition is advocating that the Government of Canada develop a strategy to protect Canadians against genetic discrimination. For more information, including how to get involved in supporting this issue, visit: www.ccgf-cceg.ca or email barbara.snelgrove@parkinson.ca.

Media inquiries should be directed to Marjie Zacks, National Director, Communications and Marketing, marjie.zacks@parkinson.ca, or (416) 227-3380.

UPDATED October 2011