Tag: scio13

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 withNote: I am willing to concede I am not familiar with them all, and would love to hear if you know of a genuine citizen science model that is not at all affiliated with any institution. are all tied to institutional or university funding and support, at least in some ways. Cornell’s Great Backyard Bird Count is a fantastic example of a crowd-sourced citizen science initiative, but there is institutional oversight to insure that anything done is ethical. Judy also makes a good note that most citizen science projects appear to be natural science related, where there is less need for ethical oversight as a whole. This, however, ties into my primary concern, which is that the research being done that would require ethical oversight is being done in the DIY science sphere, whether that’s human or animal (or even biological) research. And because of this institutional oversight, the ethical issues that are there are differentIn particular, the question of who owns research and access to data is an interesting one, but even that can be somewhat easily dismissed by any forms of consent participants sign. than the ones that inhabit the DIY science community.

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.And bio-malware should terrify people much, much more than computer malware. There are a lot of horror novels around this idea. My favorite is probably from Richard Preston (yes, the non-fiction author), which talks about a guy making a new and horrible disease from moth pox, in his bathroom. Preston clearly worked from the DIY Science community, even back in the 90s when he wrote this, and the fears are just getting more realized, not less.

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.To make those of you who know your IRBs, there’s been discussion among some of the DIY science people to set up a DIY-IRB. I’m pretty sure my face looked like I sucked a lemon when I heard this,…

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.