DIY Clinical Trials?

1037192_24450909 explores “When Medicine Really Gets Personal: The DIY Clinical Trial”;

Let’s say that you are curious about some aspect of your health. Or you are sick with a condition that many researchers don’t study. Perhaps you considered setting up and running an experiment or clinical trial yourself but didn’t know what to do. Now there is a blueprint you can follow.

Published this month in the journal Personalized Medicine is an article by someone who’s done it before, Melanie Swan of Palo Alto, Calif. Swan is an investment adviser in Silicon Valley who is active in the so-called DIY (do-it-yourself) science movement. She was part of a small group of people who wanted to see what type of vitamin B people with a certain gene should take to lower their levels of homocysteine, an amino acid connected to heart-disease risk. They had all had genetic testing done, and they decided to conduct their own study on themselves, as WSJ explained in December.

Swan wondered what steps these small studies run by amateur scientists needed to take to become more professional. She worried that to be taken seriously by professionals, the efforts needed to expand beyond genetics enthusiasts and get published in scientific journals. So over a three-month period last year, she conducted over 50 telephone and in-person interviews with doctors, lawyers, public-health thinkers, scientists and others, trying to come up with suggestions. In the paper, she lays out the seven key steps she sees to “accelerating the professionalization” of do-it-yourself studies.

Among the suggestions: the use of a template created by those who have run such trials to help design studies that will gather data with “scientific robustness.”

Another issue she identified: the high cost of blood tests needed to demonstrate whether a drug or intervention is working. New technologies that bring costs down will make it easier for amateurs to set up trials, she wrote, and she also offered some different ways DIY scientists can find funding.

One of the most interesting parts of the paper is how many aspects of professional science Swan would like to see applied in amateur-run studies too. The same ethical, legal and social questions that can sometimes slow down professionally run trials still need to be addressed, she writes, although there may be more creative solutions, such as putting study protocols online, letting potential participants make comments and suggestions for changes, and providing real-time updates.

Eric Topol, a professional scientist who serves as director of Scripps Translational Science Institute, has been a supporter of amateur scientists and their efforts to become more professional. He even invited Swan to a conference held at Scripps last year where she got to present some of her ideas to an audience of professionals.

“I am strong on the democratic movement in science,” Topol tells the Health Blog. But to really have an impact, he adds, “I’d like to see more collaboration with open-minded scientists and physician-researchers.”

Read the Article here

One response to “DIY Clinical Trials?

  1. Pingback: Demythologizing The High Costs Of Pharmaceutical Research | Webbitizers·

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