As some folks know, I’m leading a discussion this afternoon on citizen/DIY science and research ethics, with my co-moderator, Dr. Judy Stone. One of the things that Judy and I have been talking about lately is whether or not there’s really a concern with ethical research in citizen science, or if the concern is with DIY science, a related yet independent concept. A very informal poll via Twitter showed that people certainly agree with me that there is a difference between citizen science and DIY science, and that difference seems to be whether or not there is any institutional involvement. The citizen science initiatives that I’m familiar with
Now, quite obviously, the idea that an institution is involved doesn’t mean there will be proper ethical oversight – all together now, Markingson! – but at least there are procedures in place, and if a scientist does want to initiate a citizen science project, there are review boards that will likely need to be involved. It’s when you get into DIY science that the question of regulated, ethical research following necessary minimum guidelines come into play. What happens when scientists – with degrees or otherwise – start doing research outside the scope of institutional review boards, medical ethical committees or institutional animal care and use committees? While there is a long history of researchers experimenting on themselves, there is an equally long history of vulnerable groups being taken advantaged of without proper ethical oversight. How does this history and experience dovetail with DIY scientists and researchers who are not a part of this narrative history, and may not have the experience – or ethical self-regulation – to know where to draw a line in the proverbial sand? While there are standards for traditional medical research – still too frequently violated – how are they, or should they, be applied to DIY science research?
And unfortunately, those doing DIY science, like the biohackers, as a general rule seem to fall under the “but we’re all doing good” naiveté that doesn’t see the dual threat of DIY science: that of a malicious agent, and that of a project with good intent but bad result. As was pointed out to me the other night, computer hackers didn’t initially start out with malicious intent, but these days, most folks equate hackers (rather than crackers) with malware and malice. I see no reason that an open-source biohacking movement wouldn’t also devolve into the same malware and malice we know is possible, if not actually plausible.
While it’s easy to default to OMG HORROR MOVIE scenarios when talking about the life sciences, there are more practical concerns about the lack of connection to expected ethical oversights: when publishing on human or animal research, you do need to provide documentation on your appropriate ethical clearances, and many publications require a statement about ethical oversight as well as following the Declaration of Helsinki. Without having this, open source and DIY science projects are finding that, regardless of the strength of their data and research, they are unable to be published because they don’t have this sign-off on ethical approval.
Of course, the most frustrating thing about discussing the lack of genealogy and narrative history with those who are interested in practicing and pursuing science outside of institutional oversight is that inevitably, the question of “what is the answer” comes up, and there is no answer, at least not yet. The cat is out of the bag, and anyone with a cat knows it’s just about impossible to shove back in – so, given that, what do we do? How do we address the issues of ethics outside institutional oversight? Whatever we do, ignoring it until we’re forced to because of government intrusion seems like a bad idea, but that’s about all I’ve got.
So how about you? What do you think? Hopefully some of you reading this will join me and Judy this afternoon, as well as continue the discussion beyond. Today, we’ll be using the hashtags #SciO13 and #ethics for the talk, and hopefully the conversation will continue on after – so please join us, and join in.