Is it ok for patients to pay for their own clinical trials?

“Research”

Most trials are funded by public sponsors, charities, or private drug developers. Austere research funding environments, and growing engagement of patient communities, has encouraged many to seek alternative funding.  One such alternative is patient funding. In the August 6 issue of Cell Stem Cell, my co-authors Alex London and Dani Wenner ask whether “patient funded trials” represent an opportunity for research systems, or a liability.

Our answer: liability.

Current regulatory systems train the self interest of conventional funders and scientists on the pursuit of well justified, rigorously designed, and efficient clinical trials. These regulatory systems have little purchase on patients or on clinics that offer patient funded trials.  Indeed, patient funded trials create a niche whereby clinics can market unproven interventions in the guise of a trial.  Do a few Google searches for patient funded trials and you’ll see what can flourish under this funding model.

On the other hand, our denunciation of the model is not categorical.  Provided there is a system in place for independently vetting the quality of design and supporting evidence—and for preventing such studies from pre-empting other worthy scientific efforts- patient funded trials may be ethically viable.

Until those mechanisms are in place, academic medical centers should refuse to host such studies.

Edit (2015-09-08): Dani Wenner’s name was mis-spelled as “Danni” in the original posting. We regret the error.

2015 August 14 | Leave a comment

@Manual{stream2015-816,
    title = {Is it ok for patients to pay for their own clinical trials?},
    journal = {STREAM research},
    author = {Jonathan Kimmelman},
    address = {Montreal, Canada},
    date = 2015,
    month = aug,
    day = 14,
    url = {http://www.translationalethics.com/2015/08/14/is-it-ok-for-patients-to-pay-for-their-own-clinical-trials/}
}