Parkinson's disease is a neurodegenerative disorder affecting almost one million Americans. Two of those Americans affected by the disorder spoke to San Jose Mercury News about a research program that tests the DNA of those with Parkinson's: 23andMe.
Mary Haynes cannot stop her body from moving. Mike Tossy is completely still, with just his eyes moving around. Haynes and Tossy are part of 23andMe's customer base of 11,000.
With the help of customers who provide their DNA, the company has aided in the discovery of eight mutant genes tied to Parkinson's. In order for further testing, 23andMe might have to ask the participants, like Haynes and Tossy, to allow their mined DNA to be used by others.
23andMe announced a $10 million deal in January that would give a South San Francisco pharmaceutical company, Genentech, access to the genetic data of 23andMe customers.
This takes a company sharing your email with a third-party to a whole other level.
Customers of 23andMe gave their consent for their genetic data to be used by the company and its partners, but now the participants are being asked to share even more information.
The 69-year-old Haynes said she knows, "it makes me kind of a guinea pig," but said that "anything that moves us towards a cure is OK with me."
Right now, there is not one solitary gene responsible for Parkinson's. Very little is known about the disease. Of the few mutated genes seemingly related to the disorder, many with Parkinson's do not have those mutations. Some scientists say that the disorder is caused by environment and a cauldron of genes that kill neurons.
Once symptoms appear - like a hand tremor - more than half of the key neurons are dead. Brain surgery or drugs like Levodopa can slow the deterioration of the patient's condition, but eventually, the disease takes over.
Right now, the 23andMe study analyzes less than 1 percent of the DNA letters, but with the Genentech study, entire genomes of 3,000 customers will be sequenced.
"This will be one of the largest genetic studies that has ever been done in Parkinson's," Todd Sherer, CEO of the Michael J. Fox Foundation, told Mercury News.
With expanded access to customers' genetic data, Genentech could look at a file, like Tossy's, and read that he is a 58-year-old male whose mother is also a 23andMe customer with Parkinson's. His file would be linked to his mother's, but his name would not be attached.
In order to have access to Tossy's information, both he and his mother would have to "opt in" and sign new consent forms. Tossy told Mercury News that he is OK with giving permission, as long as his information is used for Parkinson's research only.
"We're excited to see the industry stepping in and making a major investment in Parkinson's," Parkinson's Institute CEO Carolee Barlow told Mercury News.
For Tossy and Haynes, the research is more personal than industry progress. "The disease marches on," Haynes told Mercury News, "and the part of our brain that is doing this is getting smaller and smaller."