Sunday, July 18, 2010
Ethics of dealing with irresponsible HIV/AIDS denialist parents
A fellow Facebook addict from Toronto sent me a message asking me what I thought about the case involving Barbara Seebald and a commentary written by Matthew Weait, a law scholar with particular expertise on HIV/AIDS and human rights issues who is based in London. Weait wrote a monograph arguing that the criminalization of HIV transmission, and indeed the criminalization of infected people who knowingly subject others to the risk of infection, are bad news. He basically thinks that the criminal law ain't a good tool to achieve desirable public health objectives, at least not with regard to HIV/AIDS. This may or may not be true, but - as I have argued in a lengthy review of this book - there can be another good reason for keeping some HIV transmissions a criminal offense, namely the fact that they demonstrably harm other parties. The same case can probably be made for subjecting some third parties to the risk of HIV infection, too. Read my review of his book. I do, in fact, agree with Weait on many HIV policy and legal issues, but I do think there are circumstances were an HIV transmission could constitute reasonably a criminal offense.
Here's Weait's take on the Seebald case.
Seebald is the second case known to me involving an HIV denialist whose belief that HIV is not the cause of AIDS has translated into serious bodily harm for her offspring. Seebald has chosen not to take antiretrovirals during pregnancy, thereby increasing significantly the risk of her off-spring being HIV positive. One of her children has been hospitalised as a result of HIV-related pneumonia. She breastfed her newborn at the time, thereby further increasing the child's risk of HIV infection. She also misled the midwife assisting in her natural birth to avoid the cesarean section required to reduce the HIV risk. Seebald's children have since been removed from her (yes, they do live with foster parents to protect them against their mother's irresponsible conduct) in order to permit medical doctors to treat them to the best of their professional abilities, an option unavailable to them while the children were with their biological parents. Seebald's - also HIV infected denialist - husband died in May 2010.
As I mentioned, this is the second case that I am aware of that deals with the harmful conduct of HIV denialist parents toward their children. Christine Maggiore, she since died on AIDS, arguably indirectly killed one of her children by ensuring the child did not receive proper medical care.
Matthew Weait, in keeping with what seems his primary legal concern: namely to ensure that the transmission of HIV remains decriminalized (or becomes decriminalized), runs the following line of reasoning to make his case with regard to an Austrian court finding against Barbara Seebald. The court issued a 10-month suspended sentence against Seebald because of her refusal to protect her newborn reasonably against HIV infection. Weait doesn't like the verdict at all. Here are what I take to be the crucial bits from his analysis (please do read his complete analysis here):
He begins by pointing out that for retributive justice to work we need a moral blameworthiness (ie a bad intention - undoubtedly not the case in either Seebald's or Maggiore's case), or the people whose actions we are concerned about need to have been grossly negligent (it's a no-brainer that this applies to both the Seebald as well as the Maggiore cases). I do think Weait's analysis is as seriously flawed as quite some of that presented in his monograph. In this particular instance he rehearses reasons from his monograph that clearly do not apply to these cases. The argument that Seebald and Maggiore were arguably criminally negligent has nothing at all to do with public health concerns (the numbers are too small for this). They have to do with something I elaborated on at great length in my review of his book: gross negligence leading to serious bodily harm to third parties. In this case the third parties were not even volunteering sexual partners, in this case the third parties were these women's own children! As an HIV clinician pointed out in this context: '...infants whose HIV infected mothers listen to AIDS denialists never got the chance to make their own decisions. The Maggiore case received wide publicity. Christine Maggiore is a person who’s proselytized against the use of antiretrovirals to prevent HIV/AIDS. She’s a classic AIDS denialist, and she gave birth to a child who died at age three late last year of an AIDS-related infection. The coroner’s report clearly reports that the child died of AIDS. That was another unnecessary death.'
Weait's analysis, on the other hand is concerned not really about the kids that have been grossly negligently infected by their nuttish mothers, but about the genuinely held dissident views of their parents. How dare we to ignore 'It follows that someone who honestly (even if misguidedly) denies the relationship between HIV and AIDS cannot legitimately be punished for onward transmission of HIV, unless one takes the view that such honest belief is to be ignored' he writes. And further, to drive this important insight home, 'And if we ignore it, then we fail to take seriously the reasons - whatever those might be – for denialism. These might be grounded in a person’s particular life story; or they might result from misinformation or misunderstanding. Whatever its cause, and however difficult it might be to understand that denialism or to sympathise with it, our incomprehension cannot be a sufficient justification for criminalisation and punishment.'
This shows, to my mind, the trap the decriminalization crowd is finding themselves in, with their blanket refusal to acknowledge that there can be circumstances where HIV transmission deserves to be dealt with thru our criminal justice system. Why should it make any difference to our evaluation of the Seebald and Maggiore cases (where idiotic views demonstrably led to serious bodily harm inflicted by these pregnant women on their off-spring), that these people held such idiotic views genuinely, that they ignored overwhelming clinical evidence to the contrary and so on and so forth. Is the argument that their circumstances were such that they were unable to compute the evidence that would have been available to them, had they cared to clear their minds? If this is the argument, perhaps removing their kids from them would have been a sensible choice. It doesn't appear to be the case then that they were strictly speaking competent to bring up these kids to begin with. Surely it is unreasonable to risk one's child's life in order to test the hypothesis of a negligible number of dissident scientists. It's here where Weait moves too quickly to discard the grossly negligible rationale as the basis for a criminal prosecution. This all, of course, is in the service of the blanket decriminalization policy he propagates.
And, just to be on the safe side, Weait quickly throws some mud at those disagreeing with this take, 'doing otherwise effectively makes a failure to accept what most other people believe a sufficient justification for punishment, and that has a frighteningly totalitarian ring to it.' This is bollocks, of course. Failure to believe what other people believe would never lead to punishing anyone, unless that failure leads to the deaths of other parties, or serious bodily harm inflicted upon third parties. Harm to self is fair game, harm to others ain't. That's why even Jehova's Witnesses today in most jurisdictions won't get away with preventing their off-spring from receiving life-preserving blood transfusions when that is clinical indicated. They can harm themselves, but they must not harm others. Nothing totalitarian about this.
Of course, there's never a chance lost to lament 'the effects of HIV-related stigma and prejudice', and so Weait concludes his analysis with general stuff about stigma and prejudice. I pretty much lost it at that point: Here's pregnant women that deliberately decided to disregard mainstream medical advice, and who so chose to risk their children's well-being (with the terrible consequences of death in the Maggiore's child's case, and of life-long serious chronic illness in the Seebald's case). The thing is, virtually all pregnant HIV infected women do NOT act like Seebald and Maggiore, hence Weait's other claim, namely that of 'systemic failures in HIV/AIDS education' is obviously baseless. - None of this has anything at all to do with HIV-related stigma and prejudice.
It goes without saying that these cases are tragic, and thankfully they occur very infrequently. The broader policy point, however, is this: Parents do not own their children. Their kids' lives ain't a free for all. The state has an interest in protecting children against abusive behavior that parents engage in, regardless of whether parents feel strongly that their behavior is not abusive when it actually is. While it might be of interest to Matthew Weait and a lot of sociologists and psychologists to figure out what drives such parents (check out the Darwin Awards in case you've doubts that there's plenty of nutcases out there), at the end of the day society needs to step in and prevent such abuse in its tracks. That's the objective. If currently that can only be achieved thru the criminal justice system, then so be it.
I mentioned in a Bioethics editorial a while ago that new frontiers are opening in the assisted dying debate. As an increasing number of...
Sokal on steroids: Why hoax papers submitted successfully to academic journals proves nothing (ok, little)A trio of authors has, during a 12 months period, submitted - by their own account - 20 manuscripts to academic journals they broadly identi...
The Canadian Society of Transplantation tells on its website a story that is a mirror image of what is happening all over the w...
Quite possibly the below table will be displayed in odd ways on your screen. Usual CoI blurb applies. I co-edit two of the journals in ...