uBiome is determined to be a cautionary tale for citizen science

Ah, uBiome. Is it that time again already?

Scientific American Blogs recently featured an article by Jessica Richman and Zachary Apte, co-founders of the crowdfunded citizen science project known as uBiome. Richman and Apte were responding to critics of uBiome, which had secured $350,000 funding to conduct research without oversight by an Institutional Review Board (IRB).

The takeaway message of Richman and Apte’s article is that they continue to fail to grasp the ethics in ethics. They are certainly motivated to keep their legal bases covered, and they value their reputation. But their ethics seem to boil down to two contentions: a) openness science brings progress; b) progress is Good.

Yet if Richman and Apte care about openness, they could do a lot more to show it. The could have been more open, for example, about their study’s consent protocols. Indeed, their Indiegogo page claims that the consent forms would be released after IRB oversight. It would be a great show of faith to release the consent forms in the open.

They could also tell us what informed consent practices they are going to use. Perhaps something about the risk of sharing genomic data online, or the potential risks associated with sequencing your baby’s microbiome and handing it out to researchers. There are lots of important ethical questions to be asked about the research at uBiome, and citizen science in general. In the interest of openness, they could have directly engaged with those problems.

Next, uBiome tell us their research has been reviewed by an IRB; “the same institution that works with academic IRBs…private firms such as 23andme and pharmaceutical companies.” I presume they mean Independent Review Consulting (now Ethical and Independent Review Services), but again, it would be good to publicly release that information in the interest of openness.

The identity of uBiome’s IRB is is important because for-profit IRBs aren’t just “controversial,” as Richman and Apte want to claim. Providing ethics services for profit is problematic. It is thus important that uBiome release information about the IRB they used, and if possible give a fuller picture of what actually came from that. It would help bring us a tiny piece of transparency about research and IRBs—transparency they noted was lacking.

(Oh, and pro-tip: don’t ever, ever hold up 23andme as a standard for ethical conduct in research. Ever.)

Openness doesn’t seem to matter to the folks at uBiome for its own sake, but only insofar as it aligns with their research goals. But if openness is only valuable for their project, then they’ve failed to be innovative as scientists. Forget IRB 2.0: these kids aren’t even out of alpha. They’ve failed to grasp that ethics is more than just law. Ethics is about what you ought to do, not what you can get away with.

In doing so, uBiome are exactly same as scientists and clinicians like Professor Owen Wangensteen, who stated at the Mondale Hearings:

…If we are to retain a place of eminence in medicine, let us take care not to shackle the investigator with unnecessary strictures, which will dry up untapped resources of creativity.[1]

This said in 1968, during which both the Tuskegee syphilis experiment and the human radiation experiments were in full swing. uBiome aren’t innovating at all in their behaviour. They are perpetuating history—the tragic history—of research where ethics is a footnote, if it is present at all.

So here’s a suggestion for “IRB 2.0.” Embrace research ethics. Embrace it now, and embrace it fully. Make a commitment not just to the project and its purported benefits, but to well-achieved benefits. uBiome brags about its $350,000 in crowdfunding, but whines about the expense of IRBs. Yet they could have easily included IRB costs, and the necessity of an IRB, in their pitch on Indiegogo. Don’t whinge about the system—set an example. The added bonus is that you’ll then have authority when you pose the system should be changed, rather than sounding petulant.

Moreover, citizen science projects like uBiome could embrace ethicists, and communicate with them openly and honestly. It isn’t enough to say “let’s have a mini IRB and get ethics training for citizen scientists.” That certainly wouldn’t hurt, but people train long and hard to examine and critique research for its ethical implications. You can’t turn every citizen scientist into a research ethicist or a bioethicist. But we’re out there, and when uBiome isn’t fighting us on twitter we’re doing interesting work.

If uBiome is serious about being open, ethical, and innovative, they have to demonstrate that. Anything else is just so much noise on the internet.

[1]: A.R. Jonsen, The Birth of Bioethics (New York, NY: Oxford University Press, 1998), p. 93.