By Turna Ray
After stepping down from 23andMe earlier this year to focus on genetics research on Alzheimer's disease, Linda Avey has disclosed the name of the new effort: Brainstorm Research Foundation.
The non-profit organization aims to study the genetics of brain health, focusing on families with a history of Alzheimer's disease. Similar to the research model employed by 23andMe, which Avey helped found with Anne Wojcicki in 2007, Brainstorm Research will employ web-based social networking tools to create a global system for connecting individuals with Alzheimer's and tracking brain functions.
Brainstorm isn't up and running yet, and the Web presence that will be critical to its research functions has also not been launched. An internet search for the foundation lands on a temporary holding page.
While Brainstorm's data-gathering methods will likely be similar to 23andMe's structure, the consumer-funded, Web-enabled research model has been criticized by some industry observers who worry that these new methods do not protect consumers' genetic information as well as traditional research methods.
Avey takes on some of these critics of DTC genomics in her new blog, called the "Life and Times of Lilly Mendel." In her first post Avey notes, "I still strongly believe in the main reason why my co-founder, Anne … and I started 23andMe in the first place — to take genetics out of the protective realm of the scientific community and make it accessible to the lay public."
Wojcicki is the wife of Google co-founder Sergey Brin. Despite monetary backing from Google, 23andMe has recently had to lay off some portion of its staff and raise the price of its personal gene scan services due to economic pressures [see PGx Reporter 11-18-2009].
Although Avey's departure coincides with 23andMe's financial difficulties, she has said that her decision to leave 23andMe and launch Brainstorm was inspired by the recent death of her father-in-law, who suffered from Alzheimer's [see PGx Reporter 09-09-2009].