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Bioethics – Page 8 – Life as an Extreme Sport
Life as an Extreme Sport

The Difference Between Citizen and DIY Science

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.

Does How We Lose Our Virginity Shape Our Entire Sex Life? In a Word, No.

This morning’s sensationalist headlines are claiming that new research, published in the Journal of Sex & Marital Therapy, says that how we lose our virginity will shape our entire sex life.

For more than one of us, I’m sure, that’s the kind of headline that makes eyebrows climb and perhaps a slight whispered “oh, god, no.” And certainly, statements that the authors are making about this study seem to indicate that there’s reason to worry:

“While this study doesn’t prove that a better first time makes for a better sex life in general, a person’s experience of losing their virginity may set the pattern for years to come,” said author Matthew Shaffer, who suggested that thought and behavior patterns may be formed the first time we have sex and then guide future experiences.Taken from Lindsay Abrams’ coverage inThe Atlantic.

Shudder. But, in her coverage, Lindsay Abrams’ notes that there is one massive flaw in this study: none of the participants had been having sex all that long, and all of them were between the ages of 18-22. And, in fact, that’s enough of a flaw that I went and dug up the rest of the study, to see just how accurate the notion that first sexual experiences do actually influence our future sex life, happiness, pleasure, and so forth.

The good news is, the study is so fundamentally flawed no one should do more than roll eyes at it, and sigh as you watch Jezebel and other pop culture sites cover the study results while sending up some sort of Lena Dunham-esqueHat tip to Lindsay for the cultural reference. My age appears to be catching up to me. panic flare.

Let’s take a look at the numerous issues in this study. First (and more than one person would argue foremost), the sampling size is horrible: all participants were undergraduates recruited from psychology courses at the school, who were offered both extra course credit for participation and entered into a raffle to win gift cards. For better or worse, students do self-select themselves into courses based on interests, personality types, etc – a lack of hard scientists, for example, may have significantly skewed the data presented, as I’m sure did the promise of extra credit and financial reward. Likewise, the final numbers (206 women and 113 men) may have been more balanced had there been more effort at reaching a more balanced study population.

But balance is off here in more than one way: all study participants were required to have had their first sexual experience (“losing their virginity”) be a heterosexual experience. Was your first time with a same-sex partner? Are you bisexual? Any non-heterosexual students need not apply – apparently how your sex lives are shaped is too complicated.

And oh, hey, were you raped?

Hate to break it to you, but that’s an automatic disqualification from the study – even though all of the headlines you’re going to see about this are going to imply that the fact you were raped is going to irrevocably and forever shape your sex life.

So once the researchers had their voluntary, heterosexual, 18-22-year-old students for this study, where the median length of sexual activity was 2.27 years, the researchers then asked the students to self-report their sexual habits and experiences… for the following two weeks.

Oh. OH. So, you’re going to extrapolate from heterosexual college students who have been sexually active for, on average, slightly more than two years, and then make assumptions about the sexual lives of everyone? For the rest of their entire lives? Based on two weeks?

Well, apparently the researchers behind this study think that’s a perfectly reasonable study goal. Me? I’d like to talk to the editors for the Journal of Sex & Marital Therapy. We need to talk about study design and worthwhile results to publish. I’m pretty sure we need to start with the fact that when a paper discussion says

this study focused on the role this milestone event may [emphasis mine] play in future sexuality

or asserts that the two-year experience of ethnically homogenous, heterosexual college kids is representative of the entire span of human sexuality, forever, the appropriate response is not “accept,” but something between “revise and resubmit” and “reject.”

In Which An Editor Obnoxiously Brags About Her Author

I spent much of the fall grumbling – mostly good-naturedly – about editing a dissertation on the dual-use dilemma in the life sciences. I fell into editing the project rather late,Note, fellow editors: don’t take on a large project like that with a two-month window, especially not when you have two academic conferences of your own to prepare for and attend, plus your day job. which led to some memorable crankiness on my part (I actually sent back one chapter with “no” and “rewrite”), and sleep turned into a precious commodity for a while.

Overall, though, I’m incredibly proud of the small part I had in the project, and extremely proud of the author in general. You can’t read the dis (yet), but you can see a little bit of Nick’s writing over on the Scientific American guest blog, today, where he looks at the proposed DHHS policy on gain-of-function research in the life sciences:

Yet even if we do overcome the hurdle of identifying what is beneficial, and what manifestly dangerous, the proposed actions given by the framework are somewhat alarming. The framework gives the option to transfer dangerous gain-of-function research to agencies that conduct classified research, such as the Department of Defence or the Department of Homeland Security.

Yet classified government research in the life sciences doesn’t have a great track record of being in the public interest: the Defence Intelligence Agency’s attempts to make genetically modified anthrax, the Defence Threat Reduction Agency’s milling weapons-grade anthrax in secret, or the CIA’s creation of Soviet-style “bomblets” that are used to disperse biological agents (in the name, so claimed, of assessing their effectiveness in use against the US), are all example of deeply troubling classified life sciences research purported to be in the public interest.

The possibility of taking research we’ve already ascertained is problematic, and giving it to an agency with a history of misuse of research, is frightening. We should question this new policy to the extent that it leaves open this option. If research is risky to public health, or doesn’t show merit regarding actually emerging infectious diseases, why open the way for that research to be done in secret?

You should go read it because you’re excited about the idea of a new, non-American voice in bioethics, or because you’re interested in the life sciences and dual-use research, or because you want an idea of what I was working on in the fall, or because you see the issues here for corruption, or just because I said so and you know I have fantastic taste.I do. Bias aside. And if you haven’t picked up on the bias yet, you’re just a wee bit slow now, eh? And I don’t know what this lampshade is doing on my head. Whatever the reason, go read.

End of Year Reflections – Or, Why You Can Blame Carl

In my religious tradition, the end of the year is a time for reflection and contemplation; what happened over the course of the year, how will it influence your upcoming year, what lessons did you learn, how will those be implemented, and so on. It’s generally a relatively quiet thing – and yes, should be done according to the lunar calendar, but I’ll be the first to admit that I’m going cultural on this one.

And so, it was with reflection at the end of the year – admittedly done in an earlier time zone, since I actually spent NYE in Brooklyn with friends – that I tweeted a simple but very heartfelt sentiment: You know, Twitter basically changed my life, several times over, this last year.

Almost all of the opportunities I’ve had this year, I can trace directly to being on Twitter. Now, of course, there’s the Seneca quote that says luck is when preparation meets opportunity, and some could argue that my preparation was key to jumping on opportunity, but the reality feels quite different for me. What I experienced was reaching out to a new world of people who were warm and welcoming and encouraging, and gave me just the smallest pushes I needed to start pursuing dreams I didn’t realize I still had.

One of the biggest examples of this would be a random discussion with science artist Michele Banks that ended up looping in Bora Zivkovic, the blog editor at Scientific American; one thing led to another and I found myself being strong-armed, in the nicest way possible, to submitting a proposal for a Science Online. Which led to my proposal being accepted, and introduced me to my co-presenter, Judy Stone, an internal medicine and infectious disease doctor with a speciality in clinical trials who also writes the utterly marvelous SciAm blog Molecules to Medicine, where she has most recently been tackling the Dan Markingson case.

Another example would be Paul Knoepfler. Paul is a researcher at UC Davis, and he also runs the amazingly informative blog IPSCell, which is a must-read for anyone interested in stem cell research. Paul covers it all, from explaining the latest journal news in accessible terms to covering the often contentious legal issues of the field. I didn’t realize just what a rock star Paul is in the field until I was at the World Stem Cell Summit in Florida, though. He really is that guy who is always surrounded by people who just want to say hello so that they can say they’ve said hello to him. I consider myself really lucky to have such an influential person telling me you know, I should keep writing, I say interesting things.

This in and of itself – being accepted by science-y types on Twitter, talking to really interesting and fun people without feeling self-conscious – would have made the year amazing. None of this, though – talking to any of the people already mentioned, or the numerous other interesting and intelligent and engaging science and ethics and research types that I do talk with on a near-daily basis – would have been possible if not for one person: Carl Elliott.
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Stop Yelling If You Want Me to Listen

Last week, I had the pleasure of attending the World Stem Cell Summit, and as is habit when I attend conferences, I tweeted my reactions to various panels I attended. Alexey Bersenev asked if I would elaborate on my rather frustrated tweeting from the panel on “The Role of States in Regulating Stem Cell Therapies,” and I agreed (although I didn’t specify the timeline of when that would happen, obviously).

This panel was a regulatory session, as were most of the panels that I sat in on. It was moderated by Kirstin Matthews, from Rice University, and the panelists were Keri Kimler of the Texas Heart Institute; Mitchell S. Fuerst, a lawyer who has represented Regenerative Sciences (Regenexx/Dr. Chris Centeno et al.) in their lawsuit with the FDA; and Leigh Turner, a bioethicist from the University of Minnesota.After needling some people about conflicts of interest earlier this year, I suppose it’s necessary to once again point out that I consider Leigh a friend and colleague, and unsurprisingly, agree with his views regarding stem cell treatments and regulations. I don’t really think that biases me against being yelled at, but hey – some people just want an excuse to nitpick.

Paul Knoepfler was also in the audience for this panel session; in his brief write-up, he called the discussion between Fuerst and Turner a “particularly interesting and vigorous debate.”

I am going to go a little bit further than that, and say that I think it was actually a really lousy panel and debate, largely because Fuerst opted to engage in what is often referred to as conversational terrorism. He relied on every “trick” in the book, including a full range of ad hominem attacks, attempts at misdirection, constant interruption and talking over both Turner and Kimler, dismissing valid criticisms with the repeated statement of “that’s not germane to this discussion,” and perhaps the one that got under my skin the most, utter loud bombast, as if shouting at the audience will simply intimidate them into agreeing with you.

In my case, it does quite the opposite. This is probably in part because I’m female, and a lot of men seem to feel that shouting loudly at a woman will intimidate her into silence, going away, or acceding to demands. Mostly it just makes me cranky and likely to yell right back — something I managed to avoid doing at the panel, largely because during the Q& A period much of the audience got up to ask Turner and Kimler questions that they were unable to address during the panel due to Fuerst’s behavior.

Turner was able to talk during the panel — at least at times — and address some of the interesting and contentious issues around the role of states in regulating stem cell therapies, and I was able to learn some more about the topic. But Kimler barely spoke, and this is too bad — she was there as a patient advocate, and given her background and experiences in Texas, with their medical board and their recent stem cell guidelines, I would have liked the opportunity to hear and understand more about the position(s) that she supports.

By engaging in bad behaviour, Fuerst undermined the position he supports regarding state and federal oversight of stem cell regulations and denied the audience not only the opportunity to learn about his position in a non-confrontational manner, but the opportunity to learn from the other two experts invited to speak.

And just to be clear, this is not behaviour unique to Fuerst. In fact, it was on display in September during the Texas Tribune Festival’s panel on whether or not the state’s stem cell policy was good for Texans.I suppose a genuinely cynical person could try to argue that it’s really Turner that’s inciting people to these levels of bombastic over-talking, but having spent time with him I can assure you that he is indeed the epitome of Canadian politeness. I find that if someone — in the World Stem Cell Summit case, Fuerst — cannot present their argument in a calm, coherent, and rational manner, I’m going to dismiss everything they say as not worth my time, if not outright invalid.This, for what it’s worth, is not something a panelist should try for, period, and it’s really something you want to avoid if your audience includes the media. I’m certainly not the first writer-type to find it irritating to be yelled at rather than engaged with. If ya can’t keep your temper under control and engage with your fellow panelists — and the audience — with the respect that they should be afforded (and that you want afforded to you), then don’t agree to sit on the panel in the first place. It just wastes everyone time, and that’s frustrating, for everyone involved.