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.
Thanks for raising these issues, and I agree with your approach.
I’m not sure whether you would include entities such as Susan B Komen Foundation as a kind of “crowdsourced” science. But it is, and the main thing they ever tell anyone about their science is how much money they’ve raised towards treating or curing or whatever breast ca. I never see anything about what questions are being asked in the science, or what answers have come out of it, or whether much use at all has come of all that $$$. And they have to be very careful not to sponsor research that may hurt their corporate sponsors (e.g. Avon), some of whom make potentially carcinogenic make-up. There is a great book and movie, Pink Ribbon Inc, that gives a lot of background and ethical consideration to this topic.
Dr. Judy Stone and I broached some of these issues at the Science Online conference recently – in particular, problems that other citizen science/DIY bio groups have had with publishing (or more to the point, being rejected from publishing) because they cannot provide IRB approval.
uBiome’s apparent lack of knowledge of the rules of ethical conduct and research – and why these rules exist – at least very nicely highlights the precise concerns we were thinking of when we set about to talk about the ethical issues behind citizen science involving human research subjects.
It is disappointing, to say the least, that uBiome’s response is less open access or transparent and more “how dare you criticize us.”
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« 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 »
These are basic ethical issues that we learn (early) during our graduate studies. Do we know if these individuals have conducted studies with human subjects before getting involved in that movement ? Just curious…
These are very important issues and I’m glad that you’ve raised them in such a thoughtful way on your blog. Our response is not “how dare you criticize us” — not at all. We are glad to have these issues brought to public awareness and believe as strongly as you do in ethical safeguards for research. (Comparing us to Nazis, though, is not a great way to start a dialog — just sayin’.)
Our point in requesting that you talk with us first was not to oppose transparency, but just to get the facts straight. Your previous post called our actions “ethical shenanigans” without verifying any of your assumptions about our project. We agree with transparency, but also appreciate having a chance to get the facts right before publication.
That said, we’re happy to respond here (and elsewhere) and to address your concerns and those of the rest of the public. We want citizen science to become a viable new way to fund and perform research, and unverified rumors of ethical issues will tarnish that ability unjustly.
Also — please remember that we’re a small team trying to do a big thing. Attacking us publicly before giving us an opportunity to respond and set the facts straight is really hard on us. We don’t have a huge PR staff (well, any PR staff at all), or even a lot of time to keep up on Twitter. We’re not some huge monolith of moneymaking. We’re three people who want to empower people to get involved in science, and to ensure that this field can grow in an sustainable, inclusive, and ethical manner.
Jessica-
1- you were not “compared to Nazis” .
2- many “small” traditional research groups have to deal with public criticism of their work.
3- this would have all gone a lot better if you had been 100% forthcoming about what appears to be the obvious fact that you had not in fact sought IRB oversight until this issue arose on this blog.
4- threatening some sort of legal action for discussing your responses to inquiry is hilariously inconsistent with your crowdfund, open science pose. Also with the wounded poor-me tone you are attempting to deploy in public comment.
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