23andMe Collaborates on Study of Parkinson’s Disease Genetics

by Dr. Hsien-Hsien Lei
Posted May 15, 2008 in DNA and Disease

Researchers are rarely study participants. Up until last week, I’d only had a hand in designing and conducting epidemiologic studies and no experience at all participating in one. While waiting for my prenatal check-up, a master’s degree student at Imperial College recruited me for her thesis study on stress and comorbidity in pregnant women. I was happy to help out since I know firsthand how hard recruiting can be especially since she told me she’d had to reduce her sample size from 200 to 100 because it was such tough going.

All I had to do was check the boxes on about 10 pages of questions and collect a total of six saliva samples over two days. Two samples are taken upon waking and another around 9 pm. I’m sorry to say that on the first day, I forgot that I was supposed to sit still while the cotton plug was under my tongue for two minutes absorbing saliva and I also forgot to take my night-time sample at 9 and did it at 10:30 instead. I was also supposed to mail my frozen samples in by regular mail this past Monday or Tuesday but got distracted so it will have to wait until next week.

What a lousy study participant I am especially given that I know what it’s like to be on the other side!

Perhaps 23andMe and the Parkinson’s Institute and Clinical Center will have more compliant study participants. They are planning a Web-based study of Parkinson’s disease that will ask 150 people to donate their saliva for genetic analysis like any 23andMe customer as well as submit personal data via the Web. In addition, the study will validate the online data collection method with face-to-face or phone interviews.

The San Francisco Chronicle reports that 23andMe also hopes that pharmaceutical companies will pay them for access to personal genomics customers who have specific conditions or disorders. Linda Avey is quoted as saying the pharmaceutical companies would be contacting customers to offer them the opportunity to participate in clinical trials (where 23andMe may also be able to offer database services) but I can easily see this extending into personalized ads for personalized medicine. Could be both good and bad.

From my recent and previous personal experiences, interviewer-led data collection will always be the gold standard because participants can ask for clarification on sample collection instructions and questions. However, being able to complete questionnaires in the comfort of one’s own home without time pressure (I was in a rush in case I was called in for my appointment), may increase the accuracy of the data being collected. The 23andMe Parkinson’s disease study will be valuable not only for its potential genetic discoveries, but also for its insights into the implementation of the Web in scientific research. Unfortunately, there’s no easy way for me to spit my sample into them series of Internets tubes so I guess I’ll still have to remember to schlep them to the mailbox on Monday.

Photo credit: David Wilmot on Flickr

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Comment by Jere

2008-05-16 14:56:22

Good post! Regarding: “Researchers are rarely study participants.” – I’m not so sure; the history of medical research, after all, would be dramatically different without a long tradition of autoexperimentation. See: Altman LK. Who goes first? The story of self-experimentation in medicine. Berkeley: University of California Press, 1998.

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Comment by Hsien-Hsien Lei, PhD

2008-05-18 10:00:24

Thanks for the comment, Jere! Good point. I was thinking more of population-based studies. In fact, I wonder if researchers should recuse themselves from participating because they over think the whole process of being a study participant! I know I am always looking for wording issues, etc. on the questionnaires.

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