Research with vulnerable populations: considering the Bucharest Early Intervention Project (part 2).

In an earlier post, I looked at a research study by Nelson et al. [1] on how the cognitive development of young abandoned children in Romania was affected by being raised in institutional versus foster care conditions. Specifically, I examined the explanation the researchers gave to argue that their work was not only scientifically sound but also ethical.
In this post, I examine the accompanying policy forum article, Millum and Emmanuel, “The Ethics of International Research with Abandoned Children” [2]. Millum and Emanuel are in the Department of Bioethics at the Clinical Center of the National Institutes of Health. As such, it’s not unreasonable to assume that they are not coming to their understanding of this research — and to the question of whether it rises to the appropriate ethical level — from the point of view that good science should trump all other interests.

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Research with vulnerable populations: considering the Bucharest Early Intervention Project (part 1).

The Neurocritic alerted me, in a comment on an earlier post, to a pair of papers in the 21 December 2007 issue of Science that raise some difficult ethical questions about what sorts of research are permissible. Quoth the Neurocritic:

This may be a little off-topic, but I was wondering if you read this article in Science, beginning of abstract pasted below.
In a randomized controlled trial, we compared abandoned children reared in institutions to abandoned children placed in institutions but then moved to foster care. Young children living in institutions were randomly assigned to continued institutional care or to placement in foster care, and their cognitive development was tracked through 54 months of age.
Rather horrifying! Can you imagine this experiment being performed in a first- (or second-)world country in the 21st century? But the title of the paper is:
Cognitive Recovery in Socially Deprived Young Children: The Bucharest Early Intervention Project
Is it now OK to perform this experimental intervention, since it’s in Romania? …
The authors of the study, Nelson et al., do have a lengthy discussion of ethical issues within the paper (e.g., the secretary of state for child protection in Romania invited them to do the study, the IRBs at Minnesota, Tulane, and Maryland [PI home institutions] approved the study, etc.). However, to me it seems to set off alarm bells in terms of ethics. I’m definitely not a developmental psychologist, but this statement seems odd:
Clinical equipoise is the notion that there must be uncertainty in the expert community about the relative merits of experimental and control interventions such that no subject should be randomized to an intervention known to be inferior to the standard of care (27). Because of the uncertainty in the results of prior research [??], it had not been established unequivocally that foster care was superior to institutionalized care across all domains of functioning… [Is the superiority of foster care really in doubt?]

In this post, I’ll look at both Nelson et al., “Cognitive Recovery in Socially Deprived Young Children: The Bucharest Early Intervention Project”. [1] In a second post in the not-too-distant future, I’ll look at the accompanying policy forum article, Millum and Emmanuel, “The Ethics of International Research with Abandoned Children” [2]. (I’m breaking it up into two posts because otherwise it may require you a full pot of coffee, rather than a mug, to get through it all.) My aim in these two posts will be to lay out the recognized ethical guidelines for research with human subjects as they apply to the Bucharest Early Intervention Project (BEIP), and to identify the worries we might raise about this kind of research — and, by extension, with the prevailing standards.

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A science debate, not a science exam.

I was reading John Timmer’s post on Ars Technica about the call for a presidential debate on science and technology and found myself surprised at how many of the commenters on the post think such a debate would be a terrible idea.
It’s not just that the commenters think that the presidential candidates would use all their powers to weasel out of taking clear stands that might get them in trouble with one constituency or another. There are quite a few commenters who make variations of this argument:

I don’t see this as being a very good idea. These people are POLITICIANS, not scientists. I do not want to see them debating issues they have little worthwhile knowledge. If elected, they should rely on their advisors, and more importantly, the SCIENTISTS themselves to determine scientific policy. Science should not be “up for political debate.” Science should follow the scientific method. Having some sort of half-baked, pre-programmed, campaigning answers only politicizes science even more — which is exactly what we should try to avoid.

The list of questions I have for presidential hopefuls is manifestly not an oral exam on anything the candidates might have learned in their science classes. (Not a single question on intermolecular forces, I swear!) But just to be clear:

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In defense of ‘flip-floppers’: attention to reality matters.

In response to one of my science-related questions for the presidential candidates, Drugmonkey points out that the question might not work the way I want it to because of the chasm between science and politics:

“8. If sound scientific research were to demonstrate that one of your policy initiatives couldn’t work (or couldn’t work without tremendous cost in terms of money, health risk, negative environmental impact, etc.), what would you do?”
This almost, but not quite, hits the fundamental cultural problem between the two societies, science and politics. Your question should be reframed as “what if research were to demonstrate your policy hadn’t worked in the first three years, then what would you do?”. The problem is that political behavior is unfalsifiable. “My policy didn’t work? Well, we just didn’t do it enough. Let’s do it more.” Tax cuts or welfare, same deal. No testing, falsifying and moving on to something else because the data told us the policy was flawed. Even the slightest sign of this and someone is a “flip flopper”.

I think Drugmonkey’s diagnosis of the politician’s MO is probably right. And, it occurs to me that this is the thing I hate most about politics-as usual. It’s what makes me want to hold the candidates down and ask them for their stand on reality.

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Questions for the presidential candidates: where do you stand on science?

sciencedebate2008.jpg
Science matters. It’s hard to make good decisions in today’s world that aren’t somehow informed by sound science — especially if you’re the head of state of a country like the USA.
This means that it’s important to know where the people lined up to get the job of President of the United States stand on science. Those of us deciding how to vote could use this information, and even you folks who are subject to US foreign policy have a significant interest in knowing what you’ll be in for.
There ought to be a presidential debate focused on science and technology before the 2008 election. It’s not just the bloggers who think so, either. A bunch of serious scientists support the idea, too.
Here are some big things I want to know about where presidential candidates stand on science — the kinds of questions a science and technology debate might put on the table:

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Getting involved with more than your wallet: strategies for supporting science and math education.

With just over 10 hours left in our ScienceBlogs/Donors Choose Blogger Challenge 2007, it’s time to think about what happens next. Supporting classroom teachers with your funds is a noble gesture, but it’s just a start.
To really get math and science literacy (and enthusiasm) to the levels we’d like to see, your time and personal involvement can do an awful lot. In this post you’ll find ideas from ScienceBloggers about how to turn your good intentions into action.

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An open letter to the ACS.

Like Revere and the folks at The Scientist, I received the series of emails from “ACS insider” questioning the way the American Chemical Society is running its many publications — and in particular, how compensation of ACS executives (and close ties to the chemical industry) might influence editorial policies at ACS publications.
The ACS disputes the details of the anonymous emails, so I won’t have much to say about those. But as an ACS member (who is, at present, participating in an ACS regional meeting), I’d like to ask the Society for some clarity.

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Fifty years after Sputnik.

Fifty years ago today, the Soviet Union launched Sputnik I, Earth’s first artificial satellite. I don’t remember it (because I wouldn’t be born for another decade), but the “BEEP BEEP BEEP BEEP” heard ’round the world left indelible traces on the fabric of life for my parents’ generation, my generation, and for the subsequent generations, too.

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