My sincerest thanks to all who have stopped by in the last 24 hours to discuss my recent post on ethics and citizen science.
I am a little dismayed that the major response from the officials at ubiome has amounted to “we’re sad you didn’t contact us directly instead of talking about this on the internet.” I thought that a major tenant of the open science movement was transparency. As a scientist, I have concerns about this citizen science movement and I would think the appropriate move would be to crowdsource my concern. For what it’s worth, I know that officials at the project have been contact directly and the response has been…
I’ll say, though, that I am still concerned. This is a study that has enrolled it’s participants without a clear and transparent plan for ethics. I think that this should be of concern to anyone who has given money to this project, especially given the explicit statement of the projects goals:
“We will involve the public in not just collecting the samples, but in analyzing the data, generating and testing hypotheses, and doing as much official “science” as possible.”
It’s clear that the study investigators hope that the data they collect will be beneficial to the scientific and medical community and I worry that the lack of a clear, transparent ethical plan will be a hindrance to them.
If you’ve given money to the project, or considered giving money to the project, it’s worth asking whether these data will ever translate into meaningful information that a physician will use to treat disease. Given how many physicians make decisions, I’m not sure. One of the primary sources of information for scientists and physicians is the peer-reviewed scientific literature. Publishing a paper nearly universally requires a statement that a study has been reviewed by an IRB, that it was conducted in accordance with the Declaration of Helsinki, and that there is informed consent. It’s a very simple statement, but one whose omission generally precludes the publication of any work. It’s very black or white. It doesn’t matter how much you’ve thought about it, or whether ethics are important to you. You either did it, or you didn’t. If you can’t include that statement, most journals won’t publish you’re study. If scientists and physicians can’t use the work, the likelihood that it will ever influence global health (beyond one person swabbing their toilet paper to investigate the effects of white vs wheat bread on his gut flora) is negligible.
It’s such a simple statement that I find myself troubled that the ubiome investigators won’t make it despite having collected a lot of money. To put this in perspective, university scientists receiving funds have to give assurances of human subjects’ protection before our money is released to us.
The other thing, related to their goal of doing ‘official science’ that I found myself pondering is the source of the money in crowdsourced science. Let’s assume that the IRB questions resolve themselves. When I write a paper, I typically include a financial disclosure telling the journal all of the sources of funding that contributed to my work. I also usually acknowledge it in the paper. This sort of thing is very important to clinicians. They’re very sensitive to conflict of interest in data that guides their treatment decision.
I wonder how journals will handle crowdsourced funding. Will we get a supplemental table with 30,000 listed donors and all of their assorted conflicts of interest? Will we know if a drug or device company, or a political group, gave a large donation to a project? I suppose that’s the advantage of the structure of the current government-based model. The money is pooled and divided among the recipients in a way that no individual’s contribution is a primary source of funding.
The disadvantage, of course, is that the pool is small compared to the number of mouths at the trough. From that standpoint, I will give the crowdsourcing folks credit. They’ve gotten some people excited about the idea of giving money to research. Now, if only we could figure out how to do it without all of these messy ethical issues. Expanding that enthusiasm would be, most assuredly, a good thing.