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.

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.

There is familiar, though decidedly short-sighted, argument for men’s veto rights over abortion that has it that abortion rights for women are somehow unfair or discriminatory. Once a woman gets pregnant, whether the man winds up a father or not depends on her decision whether to carry the pregnancy to term - she may abort against his wishes, or give birth and saddle him with childcaring, or at least monetary support, responsibilities, again against his wishes - so men are being denied a right of reproductive self-determination (whether or not to become a parent) that women enjoy. Thus the discrimination.

The argument either confusedly or deliberately overlooks the fact that men and women do not stand in equal relations to the pregnancy itself - which takes place inside the woman’s body. One can certainly appreciate the vulnerability of men who have gotten a woman pregnant, but if a child is to result, the woman then has to devote her body and her health to gestating that fetus - an invasion, and a risk, that men never face. Some of the difficulties of raising an unplanned child after it is born - the costs, inconveniences, and disruption of life plans that it entails - attend on men as well as on women (or at least on men who do not simply abandon their children and the mothers). But the invasion, loss of autonomy, discomfort, and risk of pregnancy devolve only upon those who can actually get pregnant. Requiring women to heed men’s wishes regarding parenthood means requiring them to undergo unwanted pregnancies against their will - which is not justifiable however convenient men would find it.

Usually, though, this argument is offered as a claim against fathers’ parental responsibilities - a “Freedom to Abandon Your Child” card that can be played anytime a man does not want to take responsibility for a pregnancy. Since it is (supposedly) unfair for women to be able to make men fathers against their will, men should not have to pay for the children that result. Another implication of the argument, however, is that women must not be allowed to choose abortion without permission, because that would deprive men who do want to be fathers of that opportunity. If men and women are to have equal rights (under unequal circumstances, of course), then either men must be allowed to opt out of their parental responsibilities (as women can do through abortion), or women must not be allowed to opt out of theirs.

Thus, a duplicitous and hostile version of the “men’s rights” argument can be offered, not with the intention of actually securing rights for men, but simply for the purpose of denying them to women. And it will surprise no one to learn that such an argument has in fact been offered.

I am strongly pro-life and anti-abortion. I am considering starting an informal campaign based upon ‘property rights’ and abortion.

Hear me out.

Under normal circumstances and consensual sex, the responsibility is laid at the feet of both the guy and the girl.

However, when the girl becomes pregnant, the ability to keep the child or terminate the child is solely her choice.

But, when the child is born the child again becomes the responsibility of the guy and the girl and if the guy doesn’t ‘support’ the child he is subject to legal ramifications.

It is my argument that the current law of abortion by choice of the mother alone is unfair to the father as it is not simply the woman’s ‘property’ therefore it should not simply be the womans choice.

I believe if we are going to have abortion (which I think should be illegal), we have to create a system of fairness and equality in consent and responsibility throughout the whole process from procreation, through pregnancy to birth where . . . [standard stuff: man is absolved of all responsibility if he requests an abortion and the woman refuses, but has the right to demand the woman complete the pregnancy if he wants her to and she does not].

The odd reference to “property” is actually the grounding of his argument: the embryo contains contributions of matter from the egg and sperm, each of which (he believes) is the property of its donor, and so we get this gem:

If the mother aborts the child without the fathers consent he has the right to sue for the destruction of his ‘property’ as the child is equally a part of him based upon his sperm.

(Yes - half of one cell’s-worth of DNA is “equally a part” of the embryo with the entire mass of material that the woman alone has contributed to its development. Well, if you’re going to be wrong on logic and wrong on property law, you may as well be wrong on the pounds/kilograms scale as well.)

Leaving aside the deep confusions of this nonsense, and the gross selfishness that drives it (characteristically of the “men’s rights” movement), what caught my eye was the tagline that proceeded it all: “I am strongly pro-life and anti-abortion. I am considering starting an informal campaign based upon ‘property rights’ and abortion.”

He asserts his “rights” as a man because he is anti-choice, not because he actually wants to exercise his rights as a man! His “campaign” boils down to a complex set of rules that essentially provide that a man always has veto power over a woman’s choice of an abortion, and can sue her in civil court (under a bizarre theory of property rights) if she dares act without his permission. Ostensibly this is to restore “equality” to the abortion case - equality in the sense that both the man and the woman have equal power to decide that the woman will undergo an unplanned pregnancy (voluntarily in her case, involuntarily if he says so). But the outcome of this “equality” is merely that the man can deny the woman control of her own body if she inclines toward abortion. (He does insist in that case that the man assume responsibility for raising the child, but since the woman would presumably then not want to, and the man can still choose to put it up for adoption - carrying an unwanted pregnancy in order to give up the child is no burden to him, after all - this essentially means he will be a father only if he chooses, but she must provide him with a baby if he demands it, whether or not he wants to be a father. He also allows that an abortion is permissible if both the man and the woman opt for it, but states that he wishes this option were not legal.) In other words, the entire purpose and effect of this supposed “equality” and “father’s rights” argument is simply to provide a roadblock in every, or almost every, scenario in which a woman would choose to have an abortion. “Men’s rights” here is not merely indifferent to a woman’s right to choose, but is offered as a specifically-planned attack on that right, under circumstances in which men do not even have to want to fully exercise their rights (i.e., raise a child) in order to cite them as barriers to a woman’s exercising hers.

This establishes a new low of jerk-hood in the men’s-rights community - a thing previously thought impossible.

The Guardian reports that the first-ever trial in the US of sex selection through pre-implantation genetic diagnosis in IVF has been OK’d - after an IRB review lasting 9 years! What is interesting is the focus of the trial - not on whether sex selection is practical (we know that perfectly well), but on the parents’ motivations for making such a decision, as well as its ramifications for the eventual children.

A clinical trial into the effects of allowing couples to choose the sex of their babies has been given the go-ahead at a US fertility clinic. The controversial study was given the green light by an ethics committee after nine years of consultation. The purpose of the study is to find out how cultural notions, family values and gender issues feed into a couple’s desire to choose the gender of their child. . . .

Fertility specialists at Baylor College of Medicine in Texas have already received 50 inquiries from couples about joining the trial, according to the journal Nature today. Only couples who have already had one child and want another of the opposite sex are eligible. As well as assessing the factors that contribute to a couple’s decision to select the sex of their next baby, doctors will monitor the health of the children and any social issues that arise in their families as they grow up.

There is something slightly odd about this. First, if the interest is merely in psychological factors influencing the desire of the parents to use sex selection, it is not necessary to actually perform sex selection at all. It would be possible simply to survey couples requesting sex selection (or who indicate they would strongly desire it if it were available), asking them what “cultural notions, family values and gender issues” had led them to make that request. Second, if the study is aimed at effects on children born through sex selection (by “monitoring the health of the children and any social issues that arise”), they have skewed the results of the study by restricting it only to certain couples. In particular, they have guaranteed that the most pernicious effect of sex selection - distorting the sex ratio - cannot occur, and therefore will be invisible to the study; it may also be that parents who want sex selection to balance the genders of their children have more benign (or at least different) attitudes about gender compared with those who would have wanted it only to preferentially choose one sex, and who again are weeded out before the study proceeds. At best, this study will tell us something about the effects of sex selection among the population of couples-that-have-one-child-not-born-by-sex-selection-and-want-another-specifically-of-the-opposite-sex, which is hardly representative of the entire population.

However, if they are going to do the trial at all, we should give some consideration to whether the line they are crossing is problematic. Given that the most serious problem associated with sex selection is not an issue in this trial, I don’t see this trial as a danger in itself. The concern, of course, is that allowing sex selection under limited conditions creates pressure toward allowing it without constraint - a situation that has been disastrous in some countries.

However, there are competing concerns. Restricting reproductive autonomy has arguably led to worse problems than has sex selection, even in the worst environments (and both stem from partriarchal fears of women’s independence, which should be the first locus of our efforts at addressing either problem). It is also very intrusive and paternalist to demand that patients stipulate their reasons for wanting a certain procedure, and agree to provide it only if we agree with those reasons - we have seen that in the past with abortion, and increasingly today with birth control, and the results speak for themselves. We hardly need to set up more medical star chambers to pass judgment on what pregnancies women may, or must undergo. Yet again, though sex selection has shown itself to be a serious problem in some cultures, sex selection by selective abortion has been available in the US, one way or another, for decades, yet there is no visible trend toward prefering one sex over the other. There seems to be little reason to think that allowing sex selection in the much-less-common, and more expensive, scenario of IVF will create a demand for control of gender that has not been shown to exist even where that control is available more readily and cheaply. Finally, there is something off-putting about demanding control over patients’ choices in IVF simply on the basis of technological hegemony. The fact that IVF providers happen to have absolute control over patient’s ability to make certain choices, whereas in other pregnancies the patient has many more options, does not give them greater moral ownership of those choices. If we do not prohibit sex selection by ultrasound and abortion - even though we may deplore the idea of it - it is hard to justify prohibiting it in IVF simply because we control the technology that makes it possible.

With those concerns in mind, the Baylor trial would seem to be, from the perspective of patients’ autonomy, long overdue - if not unnecessary on its face (since it does not introduce any new effects, but merely a new technology for achieving those effects). This is not to say that sex selection does not have a highly problematic potential, or that it is not offensive to certain liberal values. But annexing technological gatekeeping authority over people’s family-planning choices, simply because we have it in our power to do so, is not likely to be a better solution.

“Investigating statutory rape” appears to be a growing tactic among anti-choice officials: Kansas Attorney General Phil Kline has used a highly dubious claim of concern over statutory rape to demand confidential patient records on women who had abortions in that state (his first subpoena was not limited to underage patients, and he had previously made no effort to investigate underage patients who had given birth rather than have abortions), in an apparent attempt to intimidate those seeking abortions; now North Carolina has arrested a social worker who helped arrange an abortion for a 14-year-old, on grounds that the abortion had destroyed the DNA evidence they wanted to, yes, “investigate statutory rape” and therefore assisting with it was obstruction of justice.

Few facts are available on this case, but it sounds ridiculous on its face. There apparently has been no attempt to arrest the healthcare providers who actually performed the abortion, and the Sheriff’s Department had apparently made no attempt to simply secure a specimen of aborted tissue as evidence after the procedure - which would have been trivially simple. It seems as if the Sheriff was attempting to coerce the patient into undergoing the entire pregnancy involuntarily in order to obtain DNA from the baby afterwards, a position that makes absolutely no scientific sense.

As I say, the facts are not in, but it is hard to imagine that this social worker deliberately set up an abortion in order to prevent a criminal investigation, and it would have been simple for the Sheriff’s Department to conduct their investigation in a way that did not interfere with the patient’s healthcare if they had chosen to do so. It is hard not to see this as another example of official coercion of patients seeking abortion under color of authority.

It’s Wesley J. Smith day here at Sufficient Scruples! [See further, below.] I don’t know why - I just kept finding one more thing to comment on at his blog . . . (one of which I actually agreed with).

The last thing that caught my eye at Wesley Smith’s blog was the absurdly long subtitle/disclaimer printed in the top banner. Among many other things, it declares that:

My views expressed here . . . reflect my understanding that the philosophy of human exceptionalism is the bedrock of universal human rights. Or, to put it another way: human life matters.

“[T]he philosophy of human exceptionalism is the bedrock of universal human rights. Or, to put it another way: human life matters.”

Hmmm.

Technically, he’s making a logical equivalency there: “human life matters” is just “another way” of putting his claim that “yadda yadda human exceptionalism yadda yadda”. Which is to say that:

“T]he philosophy of human exceptionalism is the bedrock of universal human rights.”

means the same thing as

“[H]uman life matters.”

Except it doesn’t. (Mean the same thing, that is.) At all.

I gather that by “the philosophy of human exceptionalism” he means something like the claim that humans are unique in morally significant ways. (This would help explain why one of the other issues mentioned in his encyclopedic subtitle is “the dangers of animal rights/liberation”.) I am exasperated by people who use the word “philosophy” to mean “proposition” or “set of beliefs”, but never mind that now. His meaning - clearly apparent from his words here and the general tenor of his remarks on various issues - is that only humans hold a certain moral stature, because of facts about humans that make them different from other creatures. Well enough - many people agree.

But what he claims that proposition is equivalent to is merely that “humans matter”, which means no such thing at all. Humans could certainly “matter” even if they were different in no morally significant way from many or all other creatures, or indeed even if they held an inferior (but not negligible) moral status. And, the fact that some or most humans are morally distinct from all non-humans (if it is a fact) does not lead to a position of universal human rights, since virtually any feature of humans that would grant distinct moral status is a feature that not all human beings share (hence the debates over the criteria for, and limits of inclusiveness of, moral personhood within the human species).

He could, as many religious conservatives do, assert that the distinct feature of humans that all humans necessarily share is that they are human (often evidenced with dubious references to DNA). But this is no more than a claim that “humans are human” - which is tautologously true but is not only not equivalent to, but does not even support, the claim that “humans matter”.

Finally, he could simply assert that “humans matter” as a stipulative moral definition, but, aside from being implausible, that does not incorporate a claim of “human exceptionalism” except by way of the fact that “humans matter” - it is thus tautologous as a moral claim in the same way that “humans are human” is tautologous as an empirical claim.

The fact that he could be this confused in the title of his blog bodes ill for whatever he might have to say in the content.

Shockingly even to me, I find myself in agreement with Wesley Smith on this post on PETA and other animal-extremist groups:

PETA has settled a lawsuit (perhaps to avoid discovery where its files would have been thrown open to lawyers), and agreed to a court order not to infiltrate a medical testing company it had been seeking to harm. The order lasts for five years. Suing animal liberationist harassers–but only when the suit is justified–could be an effective tool to keep the movement within proper parameters. . . . Hopefully, spankings by the law–civil in the case of PETA, criminal against terrorists like SHAC and the ALF–will convince animal liberationists to stay within proper legal parameters.

This is certainly correct.

What catches my attention about this, though, is the statement that the non-infiltration agreement lasts for five years. A court actually accepted a settlement whereby they would agree to obey the law temporarily? That stipulation should be made permanent - with strong action in the form of contempt-of-court arrests upon any violation.

I may be misreading this - it is possible that “infiltration” means things like taking jobs there under false pretenses in order to gain access to files or information, rather than actual trespassing or vandalism. Such things, however, are also illegal - recall the network news-magazine show that was fined for sending a reporter into a dirty meat-processing plant posing as an employee. Though that is a tort rather than a crime, it is still prohibited, and it is still outrageous that a judge would actually allow a settlement of one tort suit with what amounts to a promise to commit more torts after a specified waiting period. A court judgment is not a penalty time out like in a hockey game - it is a finding of legal guilt. No such judgment should be entered that does not plausibly seek to put an end to the prohibited behavior - not simply regulate it. (And, as Smith points out, the last time PETA entered into such an agreement, the harassment activity was immediately taken up in physically violent form by the parallel organization SHAC, with PETA’s explicit endorsement. Promises from this crowd are of no value.)

For that matter, I wish the plaintiffs had pursued the case to trial, whether or not they thought they could get a better judgment. Putting PETA’s files in the public record would be a step toward ending their nonsense.

Wesley Smith attempts a defense of Leon Kass’s past proclamations that IVF is unjustified due to risks to the fetus - hanging his argument on the slim thread of a recent study showing that IVF embryos have high rates of genetic defects.

[S]ome bioethicists have chided [Kass,] the former chairman of the President’s Council on Bioethics[,] for having worried decades ago that IVF might pose risks to the children created thereby. . . .

Well, lo and behold: Studies now show Kass was right. Betcha the deriders won’t apologize.

However, this means little for the question of the risk of actual birth defects 9 months down the road, for several reasons. Shamelessly ripping off my own comment on Smith’s post, here’s why:

Actually, they laugh at Leon Kass for a whole lot of reasons.

As for the studies you cite, they report only genetic defects identified in in vitro IVF embryos by pre-implantation genetic diagnosis - not birth defects in children born through IVF. The article itself points out that many such defects are fatal to the embryo. In other words, these defects are likely a cause of the high rate of embryo failure in IVF; the article offers no evidence that they are a source of birth defects in children. The fact that the researcher was able to more than double the rate of healthy pregnancies by screening these defective embryos out before implantation suggests that they would not have resulted in compromised pregnancies or infants with birth defects even if they had been implanted.

As to the question of birth defects among children actually born through the various assisted reproductive technologies, research seems to show a small increase in birth defects among that population, but the results are not clear. Some relatively small studies have shown birth defect rates among “IVF babies” about 1.5 - 2 times as high as in the general population; a CDC review of over 100,000 US ART births showed an overall birth-defect rate lower than that in the non-ART population. (Summaries here and here.) However, even if the effect is real these studies cannot determine whether the defects are the result of ART procedures themselves, or from factors relevant to the parents (who, by definition, suffer fertility problems of some kind to begin with). Your linked article notes that defects were observed more commonly among embryos from couples actually seeking ART than in a control group from donors who are not fertility-compromised, which is direct evidence that it is the underlying fertility problem, not the ART, that is the cause of at least some of these defects.

In short, there is at best ambiguous evidence that ART is associated with even a minimal increase in birth defects and no evidence that it is the cause of them, while the study you cite in defense of Kass actually provides evidence that the defective embryos identified before implantation are not likely to result in infants with birth defects, and that those defects that do occur are not necessarily the result of ART. It does not even address the point Kass actually raised - the risk to children - making it rather a weak crutch in the first place.

Sadly, Kass still looks like a nutter from here.

This appears to me to be a classic case of finding one seemingly-helpful study and then proclaiming that everything you’ve ever said has been proven true. (Smith goes on to imply that Kass’s fears about cloning should also be given credence now that he has been “proven right” about IVF.) In this case, the study in question does not even address the point Kass was making, and falls far short of offering even indirect evidence that he might have been correct. Even if you’re going to claim victory from one report, this one’s a non-starter.

Abigail Zuger, the New York Times’s very thoughtful medical columnist, writes today about patients who invent fears of implausible or unlikely diseases to avoid dealing with the obvious facts of health conditions they already have but do not want to face:

“I was crossing Third Avenue yesterday and I was coughing so hard I had to stop and barely made it across,” a patient told me last week. “I’m really scared I’m getting the avian flu.”

I just looked at him. What could I say? He has smoked two packs of cigarettes a day for the last 50 years. He has coughed and wheezed and gasped his way across Third Avenue now for the last 10 years. His emphysema is not going to get any better, but it might stop getting worse if he were to stop smoking.

“I’m worried I have Lyme disease,” she said. “I have all the symptoms. I think I need to be treated.”

“But you have AIDS,” I said.

“I’m tired and weak and I have fevers and sweats. I’ve lost my appetite. I can’t think straight. I’m losing so much weight!”

She had seen a TV news report on Lyme disease, and then she had checked the Internet. All her symptoms were right there.

“But you have AIDS,” I said. “And you don’t want to take meds. That’s why you’re feeling so bad.”

“I’m really scared about Lyme disease,” she said. “I really need to get treated.”

“If you want to be scared, how about that untreated AIDS of yours?”

We looked at each other. It was an impasse. The fact that logic was on my side mattered not at all: evidently the real was just a little too real for her. How much better to find another illness to be scared of, obsess over, get treated for, get rid of.

Eventually she coerced my colleague into testing her for Lyme disease and treating her despite negative tests. Then she decided her symptoms might actually be due to a brain tumor, instead. And so it went, until she died of AIDS.

This creates a double-barrelled dilemma over autonomy: the patient will not confront the disease the doctor knows they have, and the patient demands treatment for a disease the doctor knows they don’t have. In both cases, clearly, the doctor really does know best, but the patient cannot be coerced into taking treatment they do not want, and sometimes cannot be talked out of treatment they do not need. (The doctor has a little more leverage in the latter case, by way of refusing to provide treatment that the patient cannot get elsewhere, but this comes only at the expense of the patient’s autonomy.)

For strong autonomy advocates such as myself, these cases are infuriating. The idealized model of an empowered patient assumes the patient has understandable health goals and a rational approach to achieving them - further it assumes that the patient is intelligent and educated enough to deal with sophisticated medical information, and psychologically receptive to that information as part of their decisionmaking. That latter point is the locus for many challenges to autonomy under the rubric of “inauthentic” decision-making or mental incompetency, but the problem in these cases is that the patients’ decisions are questionable even though they would most likely not be adjudged non-competent by a review board: they’re apparently not disoriented or incapable of making decisions, they just make stupid ones. And that’s not something the standard model of autonomy has much room for.

As regular readers of this blog* will recognize, problems of marginal autonomy are much with me these days. I want robust and decisive autonomy rights for all qualified patients, and I feel the qualification bar should be set fairly low. In particular, having non-mainstream values or goals has nothing to do with autonomy and should not be a disqualifier. But you kind of hope the patients will hold up their end of the deal - if we’re going to remove all protections and safeguards and let people do what they want, those people have to be willing and able to exercise the kind of protective judgment in their own cases that we relied on healthcare providers to undertake in their behalf prior to the autonomy era. Mostly, that seems like a good trade. But patients like these make respecting patient autonomy look like giving your teenager the keys to the liquor cabinet.

* Yes, I know there aren’t any.

There is a small but apparently growing movement of evangelical Christian health plans that impose extraordinary requirements on their members in return for severely limited services, operating through legal loopholes in the insurance regulations. Their appeal to Christian consumers is that they limit themselves only to people who are certified as members in good standing of evengelical churches, and their monthly premiums are lower than those of traditional insurance. Their services, however, are distinctive:

[B]ecause their membership is strictly limited to evangelical Christians certified as regular churchgoers by their pastors, they cater to people opposed to “subsidizing high-risk, sinful lifestyles,” in the words of Medi-Share’s Web site. . . .

All three of the largest plans — Medi-Share, Samaritan and the Christian Brotherhood Newsletter, headquartered in Barberton, Ohio — impose strict limits on treatment, restrictions that would be illegal under regulations that apply to conventional insurance.

Tobacco use, immoderate drinking, homosexuality and extramarital sex are strictly forbidden, and anyone caught violating these proscriptions can be expelled. The plans don’t pay for abortion,or treatment of sexually transmitted diseases or HIV that was not, as Samaritan puts it, “contracted innocently.” While each plan’s rules differ, most exclude coverage of preexisting conditions, as well as treatment related to cancer recurrence, serious heart disease, obesity, psychiatric disorders or vision problems.

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Julie Deardorff of the Chicago Tribune counts Dr. Phil’s chickens as they come home to roost:

When television pop psychologist “Dr. Phil” McGraw first teamed up with the lucrative weight-loss supplement industry, you could almost see Oprah Winfrey shaking her head in disapproval.

Oprah, his show-biz mentor, consistently has refused to endorse diet products. So when Dr. Phil told her he might vouch for Shape Up! drinks and nutritional bars, Oprah said it wasn’t necessarily a decision she would make for herself.

Dr. Phil should have listened. Now the man whose macho shtick is dispensing “Get Real” advice is facing a possible class-action lawsuit filed by three disgruntled dieters. Their main charge is that– surprise!–the products he endorsed are useless.

I’d love to be part of a jury trial to help decide which party was more foolhardy. Was it the dieters, who should have known better than to purchase weight-loss supplements, especially those endorsed by a celebrity?

Or was it irreproachable [sic - “irrepressible”?] Dr. Phil, who isn’t a medical doctor or registered dietitian (or, dare I say, even thin) but bragged that he would give his fans “scientific-based, usable information about the [obesity] epidemic”?

“I do enjoy a level of trust with a lot of people who understand and appreciate that I do my homework before I start talking,” he said last year. In hindsight, Dr. Phil seems to have opened his yapper a bit prematurely. CSA Nutraceuticals, the company that made the Shape Up! supplements, shakes, bars and multivitamins, stopped making the products early last year in the face of a Federal Trade Commission investigation into complaints of false advertising.

It was a goofy diet plan to begin with. Consumers first had to figure out whether their body resembled an apple or a pear. The “apples” downed one set of supplements and vitamins, while the “pears” took another. In addition, Dr. Phil recommended swallowing 10 more “Intensifier” pills to “take your weight-management efforts to the next level.”

The whole process involved popping 22 pills a day at $120 a month. It’s a small price to pay, I guess, if the supplements really did “contain scientifically researched levels of ingredients that can help you change your behavior to take control of your weight,” as the literature promised.

But not surprisingly, there’s no real scientific basis behind the “apple” and “pear” theory. Meanwhile, the plaintiffs’ attorney charges that there were no real clinical trials and no real testing of the products.

She goes on to point out that “dietary supplements” exist in a carefully-crafted loophole in regulatory law - they are not required to be tested for safety or efficacy in any degree. The FDA can regulate them only by conducting its own testing at its own expense, and the burden of proof is on the FDA in those cases - so almost no such products are tested. Congress explicitly created that carve-out at the “request” [$$$] of the supplement industry.

Like Deardorff, I wonder about the distribution of responsibility here. Yes, you do have to be an idiot to take untested products that occupy the woo-woo margins of scientific theory, and to take a TV huckster’s word on it even if he does refer to himself as “Doctor”. (You have to be a bigger idiot to use products advertising “no animal testing” - great: they’re testing it on you - but I digress.) And you have to be a schmuck to endorse bogus health-related products in areas in which you have no expertise, especially by making explicit prescriptions regarding their use, as “Dr. Phil” seems to have done; playing fast and loose with other people’s safety for financial gain is unforgivable. The real wrongdoing, though, is on the part of the companies marketing these worthless products, or marketing any similar products without a sound scientific grounding and thorough safety testing - which would encompass almost the entire diet supplements industry. With that much blame to go around, it’s hard to know who should bear final responsibility for the harm that is caused.

The issue is analogous to lawsuits over smoking or unhealthful fast foods - everybody knows they are bad for you, but they are produced in abundance and aggressively marketed, with minimal regulation, using the most sophisticated tricks of the advertising business (often to consumers who are addicted or otherwise have low ability to make other choices). You can hardly blame people for reacting as they have been manipulated into doing, and you can hardly absolve industries from blame for creating and marketing deadly products deliberately. But there is a necessary element of personal choice involved in using them, too.

The problem, I think, is that in a country that treats actual medicine as a consumer good in a competitive market, quasi-medical goods like food supplements fall even more obviously into the market model, in which companies have no (legal) responsibility for not harming their consumers as long as they can claim the consumers made the final choice to expose themselves to the danger. We impose relatively minimal safety requirements on prescription or OTC medications and devices, but otherwise offer no consumer protections at all regarding their use or marketing; it’s not surprising that “supplements” would be treated like Big Macs: “Here’s a warning label, you’re on your own”.

The problem is not that the supplement scammers, the unscrupulous Dr. Phils, and the bewildered and credulous consumers are all busy passing the buck round and round - the problem is that we don’t take the people’s health seriously in this country. We don’t regard health needs as important enough - in and of themselves - to make them a legislative priority: we don’t provide healthcare except in the most extreme cases; we have minimal public-health programs (which, predictably, have frequently been scaled back to accomodate religious extremists); we allow the medication and medical-device industries largely to regulate themselves; we put industry hacks in policy-making positions in government; we have large swaths of government with official policies of preventing citizens from exercising healthcare rights they are supposedly guaranteed under the Constitution. Having health needs, or having your health threatened by someone else’s malfeasance, is not justification for government’s acting to protect your interests against those of the profit-making industries that stand in opposition to it (or, increasingly, against the religious extremists who simply disapprove of your values).

That companies are killing citizens gullible enough to use their products - and that influential public figures are encouraging citizens to take significant risks on completely bogus information - are not reasons for the law to act if there’s a buck to be made in it somewhere.

Hat tip: Kristin Nelson of Women’s Bioethics Blog; she has some good things to say about the lack of testing for supplement products.

This week’s Science (subscription required) carries a report that approximately 20% of the human genome has now been claimed under patent by biotech companies. AJOB/bioethics.net summarizes their findings:

nearly 20% of the human genome, or 4,382 of the known 23, 688 human genes, have been patented, with over half owned by private companies. Around 63% of the patents are assigned to private firms, with one firm, Incyte Pharmaceuticals/Incyte Genomics, having intellectual property rights covering 2,000 human genes.

The idea of gene patents - especially those grounded on nothing more than the determination of existing base sequences, rather than the engineering of new sequences - has always been problematic. That private companies can patent something they had no hand in creating - something that simply exists in nature - seems absurd on its face, but they wield the clout to make sure the law stays on their side. The incremental lockup of the human genome, however - the commercial hegemony being exerted, step by step, over each person’s own bodily chemistry - and the control over potential cures or advances that could result from knowledge that is otherwise freely available, is downright frightening, and infuriating.

There has been a fair amount of commentary on the case of Marie Bain, a drama teacher at a Catholic high school in Sacramento, California, who was fired by the local bishop after a parent complained that she had once served as a patient escort at a Planned Parenthood clinic at some point in the past, before she had taken the teaching job. Apparently, not only is dissent not tolerated in the Catholic church, but even non-conformist acts committed before the rules in question were applicable constitute retroactive violations.

But it would be too much to imagine that only the teachers - “role models”, of course - are prohibited from acting on their own beliefs. “Naaman the Ex-Leper” quotes an e-mail sent him by a currently-enrolled student at that school, who notes that, by express policy, any student who expresses dissenting opinion on abortion, including abortions that haven’t even happened, will be expelled. From the school rulebook, as quoted by the student:

In our student handbooks, it states in capital letters that, “ANY STUDENT WHO PUBLICIZES OR ADVOCATES AN ABORTION EITHER PLANNED OR ALREADY OBTAINED WILL BE DISMISSED FROM LORETTO.”

Not only can you not truthfully express an opinion about abortion, you can’t even tell the truth about the fact that you or (apparently) someone else has had an abortion. Only silence about inconvenient truths is acceptable, on pain of expulsion. (I find this ironic in light of next week’s planned “National Day of Silence” over abortion - apparently, while other kids are planning to voluntarily remain silent to publicize the repression they have suffered (?) and advocate for repression of others’ rights in redress (?), students at this school are silenced every day by people with the same views as the students who are voluntarily silencing themselves. As I previously noted, irony is not a strong suit of the anti-choice brigade.)

UPDATE: Further information reveals that the student promulgating this policy - in defense of the bishop’s actions - is also the daughter of the woman who investigated the teacher’s past and filed the complaint against her.

The “intelligent design” trial - over a Pennsylvania school board’s mandate that science students must be encouraged to study “intelligent design” as a scientific alternative to evolution theory - is underway. Michael Behe, by all accounts, made a priceless ass of himself on the stand today - to absolutely no effect on the school board members who share his religious inclinations.
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The Bush administration has rewritten the benefit rules for Medicaid in the state of Florida, as the beginning of a program to limit benefits across the nation. The benefit-provision aspects of the program have been completely redefined, from a “defined benefit” program in which members were told what benefits the program provided, and were then entitled to receive them, to a “defined contribution” program in which the government provides a modified per capita fee for the year and then encourages private healthcare providers to limit benefits to members to earn a profit from the total fee pool. Under the new plan, benefit levels are not matched to actual patient need but to an estimate of the overall need set at the beginning of the year; with most care provided by for-profit private entities, the only way for them to make a profit is to make sure their expenditures for the year are less than the capitated fees they have received from the state, by limiting the care they provide to members. The administration states that this is their plan for the rest of the country as well.

he Bush administration approved a sweeping Medicaid plan for Florida on Wednesday that limits spending for many of the 2.2 million beneficiaries there and gives private health plans new freedom to limit benefits.

The Florida program, likely to be a model for many other states, shifts from the traditional Medicaid “defined benefit” plan to a “defined contribution” plan, under which the state sets a ceiling on spending for each recipient.

Children under the age of 21 and pregnant women will be exempt from the limits.

The Florida plan says, “The state will set aside a specific amount of money for each person enrolled in Medicaid,” based on the person’s medical condition and historic use of health care.

Joan C. Alker, a senior researcher at the Health Policy Institute of Georgetown University, said: “Florida’s proposal is one of the most far-reaching and radical proposals we’ve seen to restructure Medicaid. The federal government and the states now decide which benefits people get. Under the Florida plan, many of those decisions will be made by private health plans, out of public view.”

Vernon K. Smith, a former Medicaid director in Michigan who is now a consultant to many states, said: “Florida’s program is groundbreaking. Every other state will be watching Florida’s experience. South Carolina has developed a similar proposal. Georgia and Kentucky are waiting in the wings.” . . .

President Bush has proposed similar changes at the federal level for several years, but Congress has not accepted those ideas. In Congress, Democrats and some moderate Republicans resisted the president’s proposals on the ground that they would have allowed states to reduce coverage for very poor and very sick people. On Wednesday, Mr. Leavitt waived many provisions of federal law, letting Florida make the changes in a demonstration project.

Under the waiver, Florida will establish “a maximum per year benefit limit” for each recipient and fundamentally change its role. The state will largely be a buyer rather than a manager of health care.

In an interview, Alan M. Levine, secretary of the Florida Agency for Health Care Administration, estimated that no more than 5 percent of Medicaid recipients would hit their annual limits. At that point, Mr. Levine said, “the health plan will still be responsible for providing services to the consumer, but the state’s reimbursement would be limited to that amount.”

Asked whether the beneficiary would be responsible for paying costs beyond the limit, he said: “That can happen today. There are arbitrary limits and caps embedded in the state Medicaid program, limits on home health services, doctors’ visits, prescription drugs.”

For each beneficiary, Florida will pay a monthly premium to a private plan. Insurance plans will be allowed to limit “the amount, duration and scope” of services in ways that current law does not permit.

But of course that’s going to have no effect on quality of care . . .

John Hinderaker, of the widely-read conservative blog Powerline, offers this refreshingly honest approach to the Miers nomination:

aul’s post below started me thinking about Miers’s testimony before the Senate Judiciary Committee and how she should respond to the inevitable questions about whether assurances have been given to conservative constituencies on her view of Roe v. Wade. It occurs to me that there may be a simple approach by which both Miers and President Bush can be extricated from the present difficulty.

Suppose Miers testifies to the following: 1) She believes Roe was wrongly decided, and has expressed that view from time to time in conversation. 2) Her disagreement with Roe is not based on her opposition to abortion, but rather on her opposition to judicial usurpation. The Constitution says nothing about abortion, and the idea that the Court suddenly “discovered” the right after nearly 200 years is ridiculous. 3) She doesn’t know whether she would vote to overturn Roe, because that would depend on issues relating to stare decisis that she hasn’t yet analyzed, and she would not make that kind of decision without hearing the case before her, studying the authorities and the arguments of the parties, and discussing the issues with her colleagues on the Court.

Mightn’t that approach solve a number of problems?

The only drawback to this suggestion is that absolutely no one - and I am sure this includes Hinderaker - believes a word of this bullshit. Indeed, unless Hinderaker is privy to personal conversations Miers has had that nobody else knows about or has reported, he has no basis at all for suggesting that Miers has ever said or thought any of the things above. His only cited justifications for this suggested course are his calculations as to its political efficacy - nowhere does he even hint that he has evidence that this laughable bushwa is actually true. He’s making it up - and doesn’t even pretend not to be making it up.

In other words, Hinderaker is quite openly laying out a carefully planned series of perjuries which he advocates Miers use to “solve a number of problems” in her nomination hearings. He then goes on to describe those problems exclusively in terms of the politics of the nomination and the opportunity to score points off the Democratic party. Perjury is of course a small thing to weigh in the balance against rewards such as those.

But it’s worth noting that an influential conservative voice is openly advocating testimony that no one could possibly believe, and which is clearly not grounded on fact, as an acceptable tactic for a (Republican) Supreme Court nominee. That’s enlightening, though hardly surprising.

HealthLawProf Blog notes that some Amish families in a small Minnesota community are torn over whether to have their children vaccinated against polio. Quoting an AP story, he reports that 4 children from among only about 2 dozen families have come down with polio (none apparently is a serious case); they include 3 siblings from one unvaccinated family and an infant from another, and “state doctors expect more cases to turn up”. The other families now have to decide what to do.

HealthLawProf states that: “the community is divided over the proper reponse - vaccine or trust in God.”

Perhaps they are, but it seems to me that the question has been answered for them. The traditional Christian faith-healing position is that God wants people to rely on him and rewards their faith by curing their illnesses when they do so; to turn to medicine shows a lack of faith in God, but abstaining from technological medicine demonstrates faith and will invoke God’s protection. In that case, then, these Amish have conducted their own “natural experiment” to test their belief as to God’s preferences, and it has failed.

They didn’t get vaccinated. They did get polio. God’s obviously trying to tell them something. What do they want, a burning bush?

Supreme Court Justice Clarence Thomas has blocked an order from a federal judge that Missouri prison officials must drive a pregnant prisoner to an abortion clinic for treatment. The order is stayed pending review by himself or the full court, but meanwhile the clock is ticking on the deadline for a legal abortion in that state. In about 4 weeks it will not be possible for the woman to obtain an abortion at all.

The U.S. Supreme Court late Friday temporarily blocked a federal judge’s ruling that ordered Missouri prison officials to drive the woman to a clinic on Saturday for an abortion.

Justice Clarence Thomas, acting alone, granted the temporary stay pending a further decision by himself or the full court.

Missouri state law forbids spending tax dollars to facilitate an abortion. However, U.S. District Judge Dean Whipple ruled Thursday that the prison system was blocking the woman from exercising her right to an abortion and ordered that the woman be taken to the clinic Saturday.

The woman’s attorney, James Felakos of the American Civil Liberties Union, said in court papers that the woman is running out of time because she is 16 weeks to 17 weeks pregnant, and Missouri bars abortions after 22 weeks.

The woman, whose name was not disclosed in court papers, has said she will borrow money for the abortion from friends and family but cannot afford to pay for transportation.

Under a policy adopted in July, Missouri’s prison system does not provide transportation or security for inmates seeking abortions. The policy is based on a state law that prohibits the spending of public funds ‘’for the purpose of performing or assisting an abortion not necessary to save the life of the mother.'’

State officials argued that their policy is reasonable because of the costs and security risks of transporting inmates outside for procedures the officials said are not medically necessary.

The state estimated it would cost $350 plus fuel for two guards to accompany the woman on the 80-mile trip from her cell in Vandalia to a St. Louis clinic.

Note that the state defines “medical necessity” as “life-saving”, only - or at least it does so in the case of abortion. There is no necessity that attaches to avoiding forced pregnancy and childbirth. With this convenient definition, the state can compel women to bear children against their will if it can contrive any reason to jail them and then impose insurmountable burdens on their access to abortion - in this case a fee for a 40-mile car ride that is close to the probable cost of the abortion itself. (Note that the federal mileage allowance for car travel would come to about $40 for the entire round trip, fuel included.)

Normally, in these cases a hearing is scheduled as soon as possible. In this case, Thomas will undoubtedly rule against the procedure himself, requiring a petition to the full Court and then a re-hearing if the pro-choice members can muster enough votes. It will be an interesting look at Roberts on this issue.

The real problem is getting the Court to take the notion of reproductive freedom - the heart of the Roe decision - seriously. If you can be forced to bear children against your will under any circumstances, you have no such freedom - especially with primitive states like Missouri working day and night to find ways to force you to do so. Abortion must be seen not merely as a Constitutionally allowable privilege, but as a right which cannot be constrained for any reason. Only then will women not be at the mercy of any hostile and creative oppressive regime.

Hat tip: AJOB/bioethics.net.

UPDATE: Hmmm. SCOTUSblog reports that the ordered has been issued, upholding the emergency order to provide the woman with transportation for her abortion.

The Supreme Court on Monday cleared the way for a Missouri inmate to obtain an abortion over the objection of state officials. In a brief order, the Court refused the state’s request to stay a federal judge’s order requiring that the inmate be taken to a St. Louis clinic. Justice Clarence Thomas on Friday night had temporarily blocked that order, but the Court on Monday lifted the stay Thomas had issued. . . .

This was the first abortion controversy at the Supreme Court in which Chief Justice John G. Roberts, Jr., participated. Although there were no recorded dissents from the order denying the stay request of Missouri officials, that did not necessarily mean that all nine Justices had voted in favor of the order. The actual vote was not disclosed. Had Roberts not participated, that would have been noted, under the Court’s usual practice.

The Court was apparently acting under a standing precedent holding that states could not act to block abortions. Given that precedent, this ruling is not as surprising as I had thought, but it’s welcome, at any rate.

On May 16, 1988, the Supreme Court had denied review of a Third Circuit ruling that it was unconstitutional for prison officials to refuse to assure pregnant inmates access to abortions, even if there is no medical necessity for ending a pregnancy. The case was Lanzaro v. Monmounth County Inmates, docket 87-1431. That case also involved a New Jersey jail’s policy of requiring inmates to finance their own abortions. That was not an issue in the new Missouri case; the pregnant inmate in that case told the Supreme Court that she “is willing to pay for the cost of the medical care.”

The ethics of abortion following prenatal screening for various disabilities or genetic diseases is contentious. Its impact is becoming clearer, however - such screening programs do significantly influence women’s decisions whether to carry pregnancies to term, and on the incidence of such conditions at birth. Cystic fibrosis is an illustrative example, in this recent article from JPeds:

JPeds, Volume 147, Issue 3, Pages 312-315 (September 2005)
Cystic Fibrosis Birth Rates in Canada: A Decreasing Trend since the Onset of Genetic Testing
Annie Dupuis, PhD, David Hamilton, PhD, David E.C. Cole, MD, PhD, Mary Corey, PhD

Abstract:
The overall CF birth rate from 1971–1987 was 1/2714 with no increasing or decreasing trend. Beginning in 1988, 1 year before identification of the CF transmembrane conductance regulator gene, estimated CF birth rates followed a linear decline to an estimated rate of 1/3608 in 2000. CF birth rates may have stabilized in the last few years, but further decline may occur with implementation of carrier screening in the general population.

In other words, the introduction of even partially-effective genetic screening for cystic fibrosis reduced the fraction of children born with that condition by 25% in 12 years. That’s a considerable impact. Its effect on the population that is born with such conditions is far-reaching and subtle. The ethics of actions with such dispersed consequences are difficult to puzzle out.

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