Sufficient Scruples

Bioethics, healthcare policy, and related issues.

October 31, 2005

The Ethics of Publicizing Controversial Claims

by @ 6:10 pm. Filed under General, Biotechnology, Healthcare Politics

Dan Olmsted, Senior Editor at UPI, has a somewhat defensive but interesting article on his past experience writing about the evidence regarding a supposed link between autism and mercury-containing preservatives in childhood vaccines. Some people, mostly laypersons, became convinced that thimerosal - the preservative - was implicated in autism, and began agitating for its removal. I have little expertise in the subject, but it’s probably fair to say that the research on the subject is inconclusive, and most of the medical community remains unconvinced, but open-minded to at least some degree. Most vaccine manufacturers have stopped using thimerosal. (In 1999, the FDA concluded there was no evidence that thimerosal was implicated in any deleterious conditions, but recommended phasing it out anyway. In 2004, the National Institute of Medicine concluded there was no conclusive evidence for or against a link, but that such effects were “biologically plausible”, and also recommended phasing out thimerosal. See here.)

Olmsted wrote an article some time ago asking the seemingly-obvious question whether autism rates had been studied among the population of non-vaccinated children - in particular, among the Amish, who constitute a reasonably large community with a very low vaccination rate (for religious reasons). He cites preliminary evidence suggesting that there is in fact an unusually low rate of autism in that community. He was criticized for this proposal on grounds that in making it he is implicitly giving credence to the scientifically dubious proposition that the vaccine/autism linkage exists in the first place, and because the study he suggests may not be valid (the Amish, as an isolated and inbred community, may not be genetically/physiologically representative of the general population).

Before discussing the broader issue, it can be said that in this case Olmsted does appear to have gone beyond merely reporting an hypothesis floating around to actually advocating research - which is to be a participant in the debate, not a reporter of it. And his language suggests that he does have a conclusion in mind as to the empirical truths at issue:

A specter is haunting the medical and journalism establishments of the United States: Where are the unvaccinated people with autism?

That is just about the only way to explain what now appears to be a collective resistance to considering that question. And like all unanswered questions, this raises another one: Why?

What is the problem with quickly and firmly establishing that the autism rate is about the same everywhere and for everybody in the United States, vaccinated or unvaccinated? Wouldn’t that stop all the scientifically illiterate chatter by parents who believe vaccinations made their children autistic? Wouldn’t it put to rest concerns that — despite the removal of a mercury-containing preservative in most U.S. vaccines — hundreds of millions of children in the developing world are possibly at risk if that preservative is in fact linked to autism?

Calling this issue The Amish Elephant reflects reporting earlier this year in Age of Autism that the largely unvaccinated Amish may have a relatively low rate of autism. That apparent dissimilarity is, in effect, a proverbial elephant in the living room — studiously ignored by people who don’t want to deal with it and don’t believe they will have to.

(He then goes on to detail ways in which, he believes, both the scientific community and the press have attempted to avoid this issue. In one case he responds by noting that the reporters questioning whether the Amish are good experimental subjects are not themselves geneticists, and dismisses their objections as “self-interested speculation masquerading as expertise” - but does not consider whether his own open advocacy of specific lines of scientific research, predicated implicitly on the assumption that the Amish are good genetic models, is not the same sort of thing.)

Olmsted ends by concluding that press discussion of speculative lines of research of this type is an appropriate role for them to play: “it’s called reporting”. To some degree this is undoubtedly true. It’s perfectly reasonable for the press to report on developing scientific controversies. The stakes are higher, and the need for responsible decisionmaking is greater, when the issue in question is one that is vital to literally life-and-death decisions that real people are making for themselves, but even so it does not seem unreasonable to report that there is an open controversy about some health-related issue; indeed reporting that fact may be an important contribution to empowering the public to act in its own interests.

But there is some point, where the standard consensus is firm enough and the alternative theory is still poorly supported, when publicizing an ungrounded claim while pretending to merely doing “straight reporting” is not just a distortion of the available facts, but a disservice to a public that relies on the media not merely to state facts but to implicitly evaluate their reliability by deciding whether or not to report them in the first place.

This touches on the ongoing debate over the respective roles and relevance of the “main-stream media” and bloggers - whether reporting by the “MSM” is more reliable, and whether blogs represent an equally-valuable alternative source of information. Some rather strident voices aside (largely conservatives who cling to the “liberal media” canard), I think most people recognize that the MSM employs a traditional standard of reporting - requiring significant effort to acquire first-hand facts backed by confirmation from independent sources - that the secondary commentary of bloggers cannot match in most cases. Blogs have come to play a useful critical and evaluatory role, but that is a reactive role - one that responds to the original material printed in the MSM. For this reason, it is safe for blogs to exhibit the kind of partisan, and often completely irresponsible (in the literal sense of “beholden to no one”), advocacy that so many of them (this one included) practice. But it is not safe for factual-content reporters to behave as if primary-source media have no greater sense of responsibility for truth-telling than “Little Green Footballs” or Hugh Hewitt. If Olmsted thinks he can just say what he likes, reporting militant activists’ charges on the same footing with scientific research in stories on scienfitic subjects, when people’s decisions about their children’s lives may hang in the balance, he has not only undercut the traditional ethos of the MSM, he has made himself an enemy of those who would know the truth, whoever they may be. That, I hope, is not called reporting.

Let me end this by saying that I don’t know that Olmsted is guilty of this. I do get the impression that he thinks he has little responsibility to evaluate the claims of the anti-vaccination groups before reporting them, or even before injecting himself into the story by suggesting research that he claims (but does not know) will settle the controversy. I’m not sure what the level of certainty is that warrants reporting a scientific controversy. I think it would be a travesty for a science reporter to report creationism or “intelligent design” as a controversial alternative theory to evolution - though it would be perfectly appropriate to do a story on why it is not a qualified alternative theory. (It would also be appropriate to do a straight-news story on the ID movement as a social or political phenomenon.) The facts in that case are so squarely on one side of the issue that it is simply wrong to include the “alternative” in the picture. I don’t have a stong opinion whether the thimerosal hypothesis resides at that level of pseudo-science or at the level of reasonable plausibility, but I do think that question needs to be addressed - for any such controversy - to determine how such stories should be reported, and especially in the healthcare field.

Instasexist: Some Woman Apparently Refused to Bear Glenn Reynolds’s Child, and Now He’s Grumpy

by @ 5:26 pm. Filed under General, Autonomy, Women's Issues, Access to Healthcare, Reproductive Ethics, Sex, Healthcare Politics

Glenn Reynolds (”Instapundit”), the heavy-hitting blogger and not the nuttiest conservative around, comes up with a particularly weak version of the “men’s rights” argument for an abortion veto.

[I]n many states [a woman’s] spouse — even if he’s not the father of the child — would still be on the hook for child support. Likewise, if he didn’t want children, but she disagreed, lied to him about birth control, and got pregnant. And he certainly couldn’t force her to have an abortion if she did so, even if his desire not to have children was powerful, and explicitly expressed at the outset. (The usual response — “he made his choice when he had sex without a condom” — never comes up in discussions of women and abortion.)

So where’s the husband’s procreational autonomy? Did he give it up by getting married? And, if he did, is it unthinkable that when they get married women might give some of their autonomy up, too?

There is not, anywhere in this piece, a single acknowledgment that the actual situation at hand in any decision about abortion is asymmetrical - that the woman is demanding the liberty to control what is done with her own body, while the man is demanding control over what is done with the woman’s body - or that the salient fact that gives a woman the right to choose an abortion in the first place is that the pregnancy takes place inside her body and no one else’s. There is, however, a lot of hysterical (hee!) nonsense about those perfidious woman’s wiles: “if he’s not the father of her child”, “if she didn’t want children, but she disagreed”, “if . . . she lied to him about birth control”. And, of course, he manages to work in the anti-abortion angle: because men can’t demand an abortion (because they aren’t the ones who are pregnant), it’s somehow wrong that women can (”he made his choice when he had sex . . . never comes up in discussion of women . . . is it unthinkable that when they get married women might give up some of their autonomy?”).

He somehow thinks “procreational autonomy” is synonymous with “making other people carry out your decisions about your own procreation”. There is, again, no reference anywhere in his piece to the locus of autonomy that grounds women’s rights to abortion - that of control of their very own personal bodies - still less any recognition that men do, in fact, have exactly the same right (just not with respect to other people’s bodies, which is what the “men’s rights” people can’t stand).

This is silly, stupid horseshit, and Glenn Reynolds should know better even if most of his fellow conservatives do not.

If he wants to discuss abortion as something other than an encroachement on his personal manly right to make make women bear his children, maybe he’ll be worth taking seriously. But if he merely wants to recycle the oldest, lamest, and most stereotypically, willfully ignorant arguments of the men’s rights movement, he hardly bears listening to, let alone rebutting.

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