HIV Health Promotion Ethics and Pre-Exposure Prophylaxis

A lot has changed since the early days of HIV/AIDS. In the not so good old days an HIV infection pretty much constituted the end of the road for those infected. Most infected people died of one or another infection a healthy immune system would have been able to cope with. The public health messaging at the time was unequivocal: protect yourself and others by using condoms every time you have sex with someone whose HIV status is unknown to you. The ethical rationale for this was predicated on ideas such as Dan Beauchamp’s. He wrote, ‘public health should advocate a counter-ethics for protecting the public’s health, one articulated in a different tradition of justice and one designed to give the highest priority to minimizing death and disability.’[1] Libertarians such as the gay philosopher Richard D. Mohr didn’t buy into this story, questioning even whether the idea of ‘public health’ was intelligible to begin with.[2] He wasn’t the only critic of public health promotion campaigns. Patricia Illingworth warned more than two decades ago that AIDS health promotion campaigns could be hazardous to our autonomy.[3] She argued, persuasively to my mind, that many health promotion campaigns are manipulative and so they undermine autonomous decision-making by competent adults.

I cannot help but wonder whether we have come full-circle on this issue. Today we have medicines available that effectively control HIV. AIDS is so rendered a chronic manageable illness. These medicines have a truly remarkable side-effect. They are capable of rendering people with HIV infection, who take them, non-infectious for all practical intent and purposes.[4] Indeed, medication has come on the market offering something called pre-exposure prophylaxis. The idea here is basically that perfectly healthy people with a fairly high risk of contracting HIV take this medication to prevent the virus from taking hold in case they get exposed to it.

There are all sorts of ethical issues that arise in the context of the proposition that healthy people should take drugs to prevent a future infection that might never happen to them in the first place, at a cost of thousands of dollars per year per non-patient. Still, epidemiological modeling suggests that this strategy could end the HIV pandemic in a generation or two. You can see why: If infected people take drugs that render them non-infectious and everyone at high risk for contracting the virus took the same class of drugs as a prophylactic against an infection, eventually new infections would decrease very significantly. In the absence of a preventive vaccine this might be our best shot at beating the virus.

The courts have not quite caught up with this new reality. HIV infected individuals with undetectable viral load, who have unsafe sex without telling their partners, still risk prosecution in many countries. But what about the public health promotion industrial complex’s response? Has it modified its campaigning on the issue? It turns out, the strongest condemnation of pre-exposure prophylaxis came from public health promotion people. They were primarily concerned that people in groups at high risk for HIV infection might take the medication and engage in unsafe sex.  There is a mindset at work that we might be better off threatening people with HIV sufficiently to scare them into having safe sex. Telling them the truth and risking that some might decide to take drugs efficiently protecting them against HIV in order to engage in unsafe sex doesn’t seem an option. Why would otherwise sensible people hold such views?  Well, they are concerned that a rise in unsafe sex could lead to people acquiring other sexually transmissible illnesses.[5] 
Even if that was true, surely any health care system ought to strive toward reducing the number of people with a serious infection such as HIV even if that meant accepting a higher number of people with mostly treatable infections such as syphilis, gonorrhea and the like. Bizarrely the suggestion has also been made that if gay men stopped using condoms courtesy of the risk-reduction the pre-exposure prophylaxis affords them, they would eventually be as sloppy with the medication itself.  It goes without saying that there is zero evidence to support this contention. As to the increased risk-taking alluded to a moment ago, available research suggests that pre-exposure prophylaxis goes hand-in-hand with only a slight increase in the likelihood of reduced condom use    .[6]

There’s also the usual rhetoric of ‘reckless’ behavior, which ignores that a decision to have unsafe sex can be a carefully considered choice. It is not that safe sex is a cost neutral activity. Surely there is a reason for why most people do not use condoms consistently.[7] Patricia Illingworth wrote an illuminating monograph defending the right of gay men and others to make such choices.[8]  

It seems Illingworth and Mohr had a point when they warned about the capacity of public health promotion activities to harm individual autonomy. To campaign against HIV pre-exposure prophylaxis in order to ensure that gay men don’t make safe sex related choices health promotion people disagree with seems ethically deeply problematic. Their task would surely be to persuade potentially risk taking people not do do so by outlining what risks, other than HIV, they would run if they did what they are contemplating doing. To use the threat of an HIV infection as a means to achieve other objectives, namely to reduce the incidence of other sexually transmitted illnesses, is a non-starter.

UDO SCHUKLENK

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[1] As quoted in Patricia Illingworth. 1990. AIDS and the Good Society. London: Routledge, p. 48.

[2] Richard D. Mohr. 1987. AIDS, Gays and State Coercion. Bioethics 1(1): 35-50.

[3] Patricia Illingworth. 1991. Warning: AIDS Health Promotion Programs May Be Hazardous to Your Autonomy. In: Christine Overall and William P. Zion. (eds). Perspectives on AIDS: Ethical and Social Issues. Toronto: Oxford University Press, pp. 138-154.

[4] Gus Cairns. 2014. No-one with an undetectable viral load, gay or heterosexual, transmits HIV in first two years of PARTNER study. March 04. http://www.aidsmap.com/No-one-with-an-undetectable-viral-load-gay-or-heterosexual-transmits-HIV-in-first-two-years-of-PARTNER-study/page/2832748 [accessed March 05, 2014]

[5] For a bioethical version of this concern see Richard M. Weinmeyer. 2014. Truvada no substitute for responsible sex. February 14 .Bioethics Forum http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=6777&blogid=140 [Accessed March 04, 2014]
[6] Martin Holt, Dean A. Murphy, Denton Callander et al. 2012. Willingness to use HIV pre-exposure prophylaxis and the likelihood of decreased condom use are both associated with unprotected anal intercourse and the perceived likelihood of becoming HIV positive among Australian gay and bisexual men. Sexually Transmitted Infections 88: 258-263.

[7] L.A. Scott-Sheldon, K.L. Marsh, B.T. Johnson and D.E. Glasford. 2006. Condoms + pleasure = safer sex? A missing addend in the safer sex message. AIDS Care 18:750-4

[8] Patricia Illingworth. 1990. AIDS and the Good Society. London: Routledge

The absurdity of labelling things as 'natural'

This week's column in the Kingston Whig-Standard.

Try it yourself when you have a minute. Use any Internet search engine that tickles your fancy and search for ‘natural.’ In-between news items on natural gas you will find that ‘natural’ is a very common feature in advertisements for all sorts of beauty and health products as well as in value judgments about all sorts of human activities. A national Toronto-based newspaper reports about a line of ‘natural’ hair products for black women, there is an endless stream of advertisements for quack products like ‘natural’ flu remedies, ‘natural’ health care generally and what not else.

On a good day you’ll find opponents of genetically-modified foods going on and on about the unnaturalness of these products to get across to you that genetically modified foods are bad for your health. Then there are my religious friends arguing against assisted dying on the ground that ‘we should let nature’ take its course and let people die a ‘natural’ death. In the not so good old days – and still very popular today in places like Uganda and Russia – homosexuality was frowned upon because it was considered ‘unnatural’.

Truth be told, I never understood what it is that excites so many people about ‘nature’ to such an extent that it would influence what hair care products they purchase and what remedies they choose to protect themselves against the potentially life-threatening – yet very natural – flu virus. Surely it has something to do with a romantic view of ‘mother nature’ taking care of its own. The reality is, of course, quite different, just think of malaria carrying mosquitoes, or that spider capable of killing us with a venomous bite while managing simultaneously to cause a multi-hour erection in men. No kidding, the latter is currently being investigated as a potential source for yet another erectile dysfunction drug. I suspect that would then be called ‘unnatural’ by some, given that it is synthetic. Even stranger is the fact that these ‘natural’ products are – at the end of the day – based on biochemical substances found in nature. That does not make them – as such – any more healthier or unhealthy than, by some definition, unnatural products. Just think of all the pleasant substances that you can find in poisonous concentrations in nature. Cyanide is one of them.

I recall a sightseeing tour in Australia’s Northern Territory. Truly a spectacular sight by any stretch of the imagination. We were in little aluminium boats on a river. Before we got into the boats our tour guide asked us to keep our hands out of the inviting water. When you consider the subtropical climate there, that was quite something to ask of us. I did notice (and duly had my picture taken) in front of a sign saying ‘Beware of Xtra Large Crocodiles’, which seemed like a nice attempt at adding a bit of spice to our little tour. Well, soon after we were on the water I realized that what I thought were massive logs of fallen trees in the water began to dive when the boat got near them. Turns out they were actually Xtra large crocodiles. An incredible sight, but it became also clear to me that mother nature would probably not look after me should I decide to tempt fate in these waters.

Nature can be spectacular at the best of times. There is a reason for why, in days gone by, Christian philosophers sought to prove the existence of God by means of pointing to the alleged perfection of nature. We often are in understandable awe of the beauty of nature. Still, most modern-day Christian philosophers and theologians have intellectually grown up since then and have given up on the idea of proving the existence of their God. – Their ideological predecessors actually died a pretty natural early death because modern medicine as we know it wasn’t quite invented. Oops, modern medicine is bad because its unnatural. I nearly forgot.

Something else is weird about the idea that non-human nature is nice of sorts, yet anything us humans produce is watched with suspicion by fans of ‘natural’ products. By any stretch of the imagination, we are products of natural evolution ourselves. There is no good reason to exclude ourselves or the things that we produce from nature, and pretend they are something other than natural. Just like high concentrations of natural cyanide are bad, so could be anything that we produce. However, there is no reason to assume that things we create are bad just because they are produced by us. Everything that is physically possible should sensibly be considered natural. Whether a particular product then is conducive to our well-being is simply a matter of scientific evidence. This has nothing to do with how it came about. So, the natural hair product for black women that the Toronto paper advertorialised about might be a good product, but its goodness surely has nothing to do with its ‘naturalness.’ We should not fall for such marketing claptrap, and we certainly should not pay a premium for natural products either. It is not a big surprise that purveyors of natural health products use deliberately vague marketing spiels to sell their stuff. ‘Your body will thank you’ one website, selling antioxidants, tells the potential buyer. It turns out there is evidence that antioxidants not only serve no purpose when you eat a regular reasonably healthy diet, they can actually be harmful to your health. Another website promises equally vacuously that the natural products it markets will ‘sooth, heal and rejuvenate’ our bodies. And so it goes.

There is another kind of nature that is deployed in other debates. Some have argued against assisted dying because that would constitute a human intervention in our natural process of dying. Well, here is my message to you: Our natural process of dying typically is a pretty nasty one. Disease is unpleasant. That’s why we invented medicine. Get over it. There is nothing wrong with using modern medicine to ease our way out of a miserable death. It is also quite all right to interfere with other natural processes such as cancer busily growing in our bodies. Similarly, there is nothing unnatural about folks having sex with others of the same sex. Happens all over nature, human and non-human. This tells us nothing about the question of whether that’s desirable, but it does tell us that arguments from nature are as pointless here as they are in advertisements for beauty or health products.

Udo Schuklenk teaches ethics at Queen’s University, he tweets @schuklenk.

Quebec Liberals Sabotage Assisted Dying Legislation

This week's column in the Kingston Whig-Standard.

KINGSTON - What a week this has been.

With cross-party support in Quebec’s National Assembly, the legislature was scheduled to pass Canada’s first legislation aimed at permitting assisted dying. The bill as it stood would have permitted assisted dying in very carefully circumscribed circumstances. To be eligible, patients must suffer from an incurable illness and be in an advanced stage of irreversible decline, there must be no prospect of an improvement of their condition, they must also suffer from constant and unbearable physical or psychological pain, and they must be legally competent when they ask for assistance. Oh, and, given that a large majority of Canadians support such legislation, they also added the proviso that you would have to be insured in Quebec, presumably to prevent us folks living in provinces run by church-controlled parliamentarians from driving over to Quebec when we have decided that our time has come.

No doubt, Mr. Harper’s attorney general stood at the ready; he would have taken this legislation to the Supreme Court of Canada. After all, while health care is a provincial matter, there’s also the federal Code criminalizing assisted dying. Quebec’s legislators in Bill 52 asserted loud and clear their authority over matters health care. Quebec’s attorney general would have been ordered to cease prosecuting health-care professionals who assist Quebecers in their dying, provided they adhered to the criteria laid out in the legislation. Mr. Harper’s government, having so far thrown not too much meat in the direction of the Conservatives’ evangelical voter base, would not have let this opportunity pass to represent the religious right’s interests in this matter.

Would have been, could have?

It didn’t happen, courtesy of Quebec’s Liberal party. Before I get to that, though, let’s take a step back and look briefly at the history of Quebec’s cross-party effort aimed at passing legislation that permits assisted dying in the province. Support for such legislation among Quebecers runs these days above 80%, so this particular legislative effort did not take a lot of political guts to put into motion. It all began with the province’s former Liberal premier Jean Charest installing a Committee on Dying with Dignity. After his defeat at the hands of the PQ, this cross-party supported initiative continued under the leadership of the PQ. Eventually Bill 52 was produced, again with support of all factions in the National Assembly. It took no less than four years of public hearings, expert testimony and parliamentary debate. In the end, the document produced was very much in sync with what you can describe as best European practice on this matter. That said, if you’re opposed for religious reasons to assisted dying, you won’t like it, no matter what. If you belong to the majority of Canadians who want such legislation to come about, the safeguards put in place to prevent abuse of the vulnerable would likely have swayed you to support this bill.

The last reading of this bill in the National Assembly this week was expected by most observers to be a mere formality. After all, the Liberals in the province started it all, the PQ continued the process. How often do these two parties, in Quebec of all places, agree on anything of substance?

Much to the horror of the Liberals in the National Assembly, the PQ currently enjoys an all-time high in opinion poll after opinion poll. They are well on course to form a majority government if an election were held today. The Liberals? Well, not so much.

There must have been some hope among Liberal party strategists that the budget the PQ planned to introduce would have permitted the Liberals to inflict some damage on the province’s governing party. They wanted to ensure the document could be properly debated after the two-week recess the National Assembly began at the close of business on Thursday. So they tried hard to drag out the debate on Bill 52 to prevent the PQ from introducing the budget this week.

The PQ, on the other hand, seems determined to call an election during the recess. Of course, the Liberals aren’t terribly keen on an election campaign in Quebec at this point in time. Their current leader, Philippe Couillard, is proving to be a vote destroyer not dissimilar to what Michael Ignatieff and Stephane Dion were for the federal Liberals. And now Couillard added another nail in the coffin of Quebec’s Liberal party. By means of procedural shenanigans, he prevented a vote on Bill 52. He claims, disingenuously, that there just wasn’t enough time to debate this bill properly. Unlike the PQ and the two other smaller parties in the National Assembly, the Coalition Avenir Quebec and Quebec Solidaire, the Liberals were not willing to stay long enough to permit a vote on Bill 52. As a result, Bill 52 died on the order table.

Remarkably, Couillard was quick to declare that if the Liberals form the next Quebec government, they would reintroduce Bill 52 unchanged. Now, you got to ask yourself three questions here: First, as the PQ’s Stephane Bedard pointed out, what exactly do the Liberals think hasn’t been discussed during the last four years of hearings and deliberations? Second, why would the Liberals, in the unlikely event that they form the next provincial government, introduce exactly the same bill that they could not support this last week? Surely they must have issues with the bill that worry them. Finally, if they don’t have serious problems with Bill 52, why didn’t they permit a vote on it?

It is pretty clear that the Liberals in Quebec sacrificed Bill 52 for purely election strategic reasons. Given the popularity of the bill in Quebec, let me predict that the PQ will hammer them in their election campaign also on this issue. It’s going to be a vote winner for them.

Udo Schuklenk holds the Ontario Research Chair in Bioethics and Public Policy at Queen’s University, between 2009 an 2011 he chaired an international expert panel drafting a report on end-of-life issues in Canada on behalf of the Royal Society of Canada. He tweets @schuklenk.

Fighting for survival in the clinical trials' system

This weekend's column in the Kingston Whig-Standard.

 Imagine you suffer from a catastrophic kind of illness, an illness that’s invariably going to kill you in the near future. Everything that you and your doctor know about the illness suggests that your death will be anything but peaceful. Doctors can deal with some of your symptoms and palliative care can address some of the pain you are experiencing. But that’s about it.

Sadly this scenario isn’t unrealistic. Many Canadians face this sort of situation today.

During a scheduled visit to your specialist doctor you learn that there’s a brand-new drug currently being tested that might just save your life, if it worked that is. The doctor has already inquired with the researchers testing the drug in a phase-three clinical trial and you would be eligible to participate in that trial.

Phase-three clinical trials are trials at which stage in the drug research and development process we know what its safety profile looks like and we have pretty good evidence to think that it’s effective to some extent. That is so because during earlier trials, involving initially animals and eventually other patients, sufficient evidence has been accumulated to justify letting the phase-three trial go ahead. Now the doctors are trying to recruit a fairly large number of patients in order to establish whether the drug is as good as they thought it is. The nature of your disease is such though that there is no standard therapy around to assist your struggle for survival. The trial design in such cases demands that the experimental agent is tested against a placebo control, a dummy pill. That’s done because we need to know, before doctors can confidently prescribe the drug to patients like yourself, that the drug is doing better than what is the status quo – ie no drug. It’s always possible that an experimental drug actually does worse than the dummy pill.

Now, ask yourself, if you were that patient: Would you be willing to participate in a last-chance clinical trial where you’d have a 50:50 chance of getting a dummy pill? You know already what the dummy pill would achieve: your death. Would you trust the investigators to pull the plug quickly enough for you to survive if they discovered that the experimental drug actually works? In case you want to get a better handle on how it feels to be faced with this sort of decision, check out this blog (adriennes.blog.com) by a Toronto-based melanoma patient.

Many people suffering catastrophic illnesses flat-out refuse to participate in research that’s designed as I have described it. Their argument is not about the trial methodology, it is sound. Their argument is about the ethics of providing dying people with a coercive offer: join my clinical research project on my conditions or die a predictably horrible death.

The good news is that the story doesn’t end here. It has been recognized by regulators both in Canada and elsewhere that such coercive offers to people fighting for their very survival are incompatible with the fundamental values of liberal democracies. We must not reduce patients suffering catastrophic illnesses to mere means to achieve our research objectives. While that’s nothing much other than an honorable principle, there’s also a more pragmatic reason for this. I’ll get to that in a moment.

Health Canada actually permits people who suffer catastrophic illnesses to access drugs that are in the clinical trials system, and they can do so without actually participating in the clinical trials I mentioned earlier. The agency runs a Special Access Program for these sorts of patients. The program permits patients to access the experimental agent without trial participation. In return they promise to have their doctors monitor the impact of the drug carefully and report it back to the manufacturer or whoever runs the clinical trial. One of the ethical reasons for this I have just mentioned. The pragmatic reason for this solution is this: it was discovered during the early days of the AIDS epidemic, when no life-preserving medication existed, that patients who are coerced into placebo controlled trials will simply cheat in order to get access to the actual experimental drug. HIV-infected people enrolled in ostensibly placebo-controlled trials and then took their drugs to chemists to find out who did and who didn’t get the active agent. They then started sharing the actual drug and dumped the placebo. That, of course, rendered the trial pretty useless. True volunteers would have accepted the uncertainties and volunteered to test whether the experimental agent is any better than the placebo control.

The problem patients with catastrophic disease who wish to access experimental drugs through our Special Access Program face today in Canada is two-fold: Health Canada leaves it up to pharmaceutical companies to decide whether or not they provide drugs to eligible patients. Manufacturers who have trouble recruiting sufficient numbers of patients into their trials could deny patients access to the experimental drug to encourage them to join the trial on their conditions. They might also have other reasons for refusing to provide catastrophically-ill patients with access to an experimental drug. Either way, we are back to square one: a coercive situation. This problem occurs more frequently in Canada than you might think. Here is a heart wrenching appeal (http://www.youtube.com/watch?v=olwDT7NPSsM) from one such patient, who has since died. A Toronto paper contacted me about another case recently, both cases interestingly involved pharmaceutical multinational Bristol Myers Squibb refusing to provide an experimental drug that the company is testing in a phase-three clinical trial right now. This issue should be addressed by Health Canada as a matter of urgency. The other problem is that manufacturers are permitted to charge for their experimental drug. That is unreasonable. It costs typically cents to produce such medicines – I am not talking research and development costs but actual production costs. There is no reason whatsoever why pharmaceutical companies should profit from experimental drugs. They should be compelled by Health Canada to provide such agents to clinically eligible patients, while the clinical trials are ongoing and the drug isn’t formally approved as a for-pay prescription medication. If Health Canada were to address these shortcomings of the present Special Access Program it would ensure that catastrophically ill patients are given a fairer shot at actually accessing these experimental drugs.

Udo Schuklenk hold the Ontario Research Chair in Bioethics and Public Policy at Queen’s University, he tweets @schuklenk

Experts vs the know-it-alls

This is my Kingston Whig-Standard column from January 31, 2014.

KINGSTON - I have been wondering for some time about the seeming decline of trust in and respect for expertise or considered expert opinions. What triggered it were two very personal experiences that I want to relay to you before I make a broader point.

The first example is the ongoing debates on the safety of vaccines. Well, when I say ongoing debates, they are not quite debates amongst experts. The consensus among experts is that vaccines do not cause autism and that it is highly advisable — life-saving in many cases — to get flu shots prior to flu season. And yet, talking to acquaintances and friends about the subject, I quickly discovered that the consensus among experts counts for precious little. One friend told me that his aunt is a nurse and she told him not to get flu shots — one does wonder where she would have received her training. A colleague told me that she would never (rolling eyes, voice raised) get flu shots, because she’s certain that they would be harming her body. When I wrote a piece suggesting that we have a moral obligation to our fellow citizens to get vaccinated because it would create herd immunity and so protect us individually as well as as a group, I quickly learned from comments under the article that the vast majority of public health experts who recommend this course of action are pharmaceutical industry shills, that taking some humbug homeopathic concoction would also do the trick, and the list goes on. Invariably, this noisemaking was accompanied by fairly aggressive language and deliberate attempts at denying one’s opponents’ expertise, morality and ultimately credibility. No scientific evidence was provided; at best there were links to Internet sites featuring alternative health “information.” The thing that I cannot wrap my head around is the apparent lack of trust in specialist professional consensus opinion among so many. Any bogus “alternative” take, no matter how silly, seems to carry more weight with very many of us. Perhaps it’s a sign that our experts need a lesson or two in communicating their knowledge and advice better.

The other example: a few weeks ago I posted a comment on the website of a national conservative newspaper. In question was an article on assisted dying and what I thought was misleading content in the article. I knew my way around the subject matter because in 2009 the Royal Society of Canada, our national academy of arts, humanities and sciences, asked me to chair an international expert panel tasked with drafting a major report on end-of-life issues in the country. Our multi-disciplinary team, consisting of senior clinicians, lawyers and philosophers, spent two years working more or less full time on producing what arguably constitutes a landmark book-length (onlinelibrary.wiley.com/doi/10.1111/bioe.2011.25.issue-s1/issuetoc) report on the subject matter. So, I had some expertise to comment on said article. Now, within a few minutes of me posting said comment, someone whose name I had never come across in discussions on this topic berated me, telling me that I should do my homework before commenting in public on such issues. I replied by posting a link to our report, suggesting that I had at least some claim to expertise on the subject matter. Within no time, the commenter had found me on the Internet — not a difficult task with a last name such as mine. To my surprise, she then proceeded to berate Queen’s University for hiring me. Scandalous! There was Queen’s University daring to hire someone with whom she happened to disagree. Clearly this showed the university’s utter incompetence. I will get back to that competence issue in a moment.

Of course, in a democracy (actually, everywhere), people are entitled to their views and should be able to express them — well, short of calling someone racist names, threatening to kill someone, that sort of thing. It seems to me, though, that the non-expert activists in the two cases I have just described believe that their views are just as valid as those of actual demonstrable experts capable of backing up their claims with facts. And that, of course, is utter nonsense. It just isn’t the case that the views of someone believing in homeopathy are as valid as those of someone who has done actual clinical research and can back up her views with research results that are testable and reproducible.

In some ways, I think, this rejection of expertise constitutes a threat to how we do business in our modern societies. Rationality and evidence were at the core of how we developed policies, and they should be at the core of how we ought to develop policies. As anyone who follows Canadian politics knows, since the advent of Stephen Harper’s reign, this isn’t the case any longer, either. He has shuttered crucial government research facilities simply because they produced evidence that conflicted with his ideological take on reality. It’s a make-believe world that is being created. Meanwhile, actual scientific expertise is deliberately destroyed in the process.

Funny enough, experts being what they are, have investigated this phenomenon, and there is even a name for it. It’s called the Dunning-Kruger effect. Basically, what it does is describe how people could possibly be as uninformed as they are and fail to notice that they really are clueless. Experimentally, the researchers were able to show, for instance, that the worst performing students consistently overrated the quality of their performance while the best performing were typically more skeptical about their place in the academic universe. So, as a writeup at Psychology Today(www.psychologytoday.com/blog/evolved-primate/201006/when-ignorance-begets-confidence-the-classic-dunning-kruger-effect) puts it: “People fail to grasp their own incompetence, precisely because they are so incompetent. And since overcoming their incompetence would first require the ability to distinguish competence from incompetence, people get stuck in a vicious cycle.”

I think the mass media — yes, let me finish this up with a quick round of media bashing — must take some responsibility for the mess we are getting ourselves into. Typically, any talk show, newspaper article, even news program, aims to provide for-and-against-type programming. Ostensibly, this is designed to demonstrate balance. But really it more often than not pits an actual expert against a Dunning-Kruger-effect-type activist. Yet they are happily put together on stage, quoted in newspaper articles as if their opinions carried the same value. What really happens here, however, is that audiences are misled by those who put those programs together.

So, there’s the problem. The question is, how can we fix it?

Udo Schuklenk isn’t an expert in most things, but he does claim expertise in a few things, he also teaches at Queen’s University and tweets @schuklenk.

Why tax funding for Catholic schools is wrong

This week's column in the Kingston Whig-Standard.

Ontario doesn’t have just one publicly funded school system. We actually afford ourselves the luxury of a public school system and a taxpayer-funded sectarian school system, namely a Catholic school system. The reasons for this are historical, and they are well known. The Confederation pact included a deal that guaranteed the Catholic minority in Ontario a publicly funded school system. It was defended at the time as a means to ensure religious freedom for the Catholic minority in the province.

The reality is that genuine freedom of conscience — as opposed to mere religious freedom — can only be sensibly guaranteed in a society operating a strict separation of state and church(es). The state has no business in funding or subsidizing sectarian educational outlets, hospitals and other institutions. If a religious organization wishes to run its own school or hospital, well, it should put up the cash for it or go away if it is unable to find it. It cannot be that in the 21st century huge amounts of scarce tax monies are provided to religious, ideological educational outfits that preach values that contradict what modern Canada stands for in the world. On anything from reproductive rights to end-of-life issues to marriage equality, the Catholic Church consistently finds itself not only on the wrong side of history, but it also propagates views that the majority of us don’t share. And that is putting it mildly. The very nature of Catholic ideology puts it at loggerheads with anti-discrimination legislation in the province. I am sure you have not forgotten, either, how Catholic school boards across Canada tried to prevent girls in their schools from getting access to the cervical cancer preventing HPV vaccine. The usual Catholic hangups about sex came in the way of protecting girls efficiently from cervical cancer. That kind of nonsense is what our tax monies provide financial backing for in Ontario.

A promotional video produced by Ontario’s Catholic schools has been making the rounds on the Internet during the last few weeks. It features a bunch of students, parents and teachers working in these schools, praising their superior moral education. A lot has rightly been made of the fact that this video implicitly claims to provide a superior education due to the religious values it transmits to its students. Religious organizations, and the Catholic Church is not a unique case here, have always had a keen interest in getting their hands on children. Long-term survival of these ideologies depends on being able to indoctrinate young people at an early age, while they are still impressionable. Despite claims to the contrary by the Ontario Catholic schools that used this video to promote themselves to prospective students and their parents, it is clear that their proposition is that not only are their schools better, but also that their graduates are better human beings courtesy of their ideological religious indoctrination. This is surely offensive to anyone who went to a public school who doesn’t share these particular sectarian values — that would be most of us.

You cannot help but marvel at the guts these marketers of all things Catholic clearly possess. There they are, representatives of an organization whose senior staff spent decades protecting child-molesting pedophiles among its staff across the globe. The German historian Karlheinz Deschner produced a 10-volume opus magnum dedicated to the criminal history of the Roman Catholic Church. Bits and pieces of his detective work are available in English translations, I do recommend them to your attention if you are interested in this issue at all. Even if only half of the horrors he documents in those volumes are true reflections of what actually happened, there can be no doubt at all that the Catholic Church and its representatives should really spend more time reflecting on their own organizational misconduct than on telling us how we ought to live our lives. We certainly should not deliver our children into their schools, and we certainly should not provide tax monies to them in order to ensure the indoctrination of future generations of children with this particular ideology.

The United Nations Human Rights Commission (www.cbc.ca/ontariovotes2007/features/features-faith.html) reportedly agreed in 1999 that Ontario’s exclusive funding for Catholic schools and no funding for other religious organizations’ educational outfits discriminates unfairly against non-Catholics. That said, the situation is worse than it looks. Catholic schools actively discriminate against non-Catholic teachers for employment purposes — using our tax monies to do so — while Catholic teachers are, of course, welcome in our public system. The result is a significant overrepresentation of Catholic educators in the school system.

Sectarian schools are divisive. The video I mentioned earlier features a number of students clearly feeling superior over their public school counterparts, because of the Catholic values that they have internalized courtesy of years of indoctrination. What they ought to have learned is that there is a variety of competing religious ideologies, what these ideologies preach, what their histories are, and so on and so forth. What they shouldn’t have been taught year after year after year is that a particular ideology is true. Cohesive societies are impossible to build under such circumstances. It is obviously unjust to financially privilege Catholic schools only. Seemingly, the Roman Catholic Church sees nothing quite wrong with being in such a privileged situation. It’s this understanding of morality, of course, that has given this particular church such a bad reputation in most developed nations. And don’t take my word for it, the last leader of the church, Pope Benedict (www.dailymail.co.uk/news/article-2041638/Pope-admits-questionable-reputation-Catholic-church-final-day-Germany.html) conceded that the church these days has a “questionable reputation.”

Konrad Yakabuski, in a www.theglobeandmail.com/globe-debate/chapter-and-verse-catholic-school-fundings-unfair/article16462714/ commentary penned for Toronto’s Globe and Mail newspaper, argued this week that public funding for Catholic schools in Ontario ought to end. We should have a debate in Ontario about a school system that we clearly cannot afford any longer and that surely is not fit for purpose. We face declining enrolments, a result of our changing demographics, yet we continue to run a school system that was conceived in very different times indeed. It is time to end public funding for Catholic schools. The majority of Ontarians agree. Consistently, opinion polls indicate that the majority of us want to see public funding for Catholic schools gone sooner rather than later.

Udo Schuklenk is a philosophy professor at Queen’s University, his most recent book is “50 Great Myths About Atheism” (co-authored with Russell Blackford, Wiley-Blackwell 2013). He tweets @schuklenk.

Abortion wars in Canada

Here's is this last week's column from the Kingston Whig-Standard.

One of the reasons for Stephen Harper’s past electoral successes had undoubtedly to do with his promise not to touch the abortion or the marriage equality issues while in office. Canadians are not keen on reopening, in particular, the divisive abortion controversy. Realizing that any other course of action would be politically suicidal, Harper has slapped down backbenchers of his own caucus who tried to do otherwise. One has to give credit to the man where credit is due, whether because of political expediency or because he takes promises seriously, the prime minister stuck to his guns on the abortion issue.

Let me say at the outset that I support the status quo on abortion in the country. It’s up to pregnant women to decide whether they have an abortion or whether they carry a pregnancy to term. There are good moral reasons to do with what I take to be the moral status of embryos and fetuses and what I take to be the moral foundations of what is a woman’s absolute right to control what is happening to her body. This is well-trodded ground, though. These arguments have been going back and forth between pro-choicers and anti-choicers at least since the late 1960s. I am not going to bore you with a rehash of these arguments. Those who disagree will continue to disagree. If you believe that an embryo is a person from the moment of conception, nothing that I can say with regard to the science and morals of what dispositional capacities should be required to call something a person will likely sway you toward my take on the issue.

I am more concerned about patterns of what I take to be strategically motivated campaigning by anti-choice groups. I first noticed it in the context of the euthanasia debates. Anti-choice activists, typically closely aligned with conservative religious organizations such as the Roman Catholic Church, have started repackaging their campaign messaging. In the good old days, they’d have simply told us that their God doesn’t like euthanasia and then they would have expected the rest of us to fall in line. That, of course, doesn’t quite cut it any longer today. So they have started resorting to quite vacuous rhetoric such as that euthanasia violates “human dignity.” When you ask what exactly they’re talking about here, Christian ideology comes to the fore in no time. It’s really just an attempt to sell religious views in secular verbiage. Or they claim that “vulnerable” people would be at gravest risk of abuse. A closer look at the social class makeup and educational background of the vast majority who ask for assistance in dying shows that there’s nothing to this scare campaign, either. Call me a cynic, but I am not just a little bit suspicious that this rhetoric is truly mere expediency. It has probably been road tested with pilot groups and has yielded results considered desirable by these same religious campaign organizations.

I cannot help but wonder whether a similar switch has also occurred in the abortion wars. Knowing that the overwhelming majority of Canadians are perfectly comfortable with where we are at with regard to the legal status of abortion, activists have been looking for wedge issues, that is issues where even your average liberal Canadian would scratch their heads wondering whether that might not be problematic. The objective here is to build coalitions with people who would generally consider themselves pro-choice or “on the fence.” What’s needed, much like in the euthanasia debate, are sensitive issues that would make people second-guess their stance on abortion.

And so it goes. The wedge issue chosen — strangely to my mind — isn’t late-term abortion. They typically do not occur for any frivolous or no reason at all, but because of very serious fetal abnormalities that were not caught earlier during pregnancy. While that is so, late-term abortions have been a popular target for anti-choice activism in the United States and elsewhere. Their Canadian brethren have instead zoomed in on sex selection. You know, women having abortions because of the sex of the fetus. I could be mistaken, but it seems it all started with what I still consider a remarkably disingenuous editorial penned by an interim editor of the Canadian Medical Association Journal about two years ago. He suggested that pregnant women should not be provided with information about the sex of their fetus in order to prevent sex-selective abortion among Indo-Canadians. In the editorial, he refers to female fetuses as “girls.” Incredibly, he even referred to “saving” millions of women in India and China, as if the abortion of female fetuses amounted to the murder of either girls or women. It tells you a lot about the Canadian Medical Association Journal that such nonsense should ever have found its way into its editorial pages. There is, in fact, some weak evidence suggesting a slight gender imbalance among newborns of Canadians of East Asian descent, if a report published in the Toronto Star newspaper can be trusted. In the big swing of things, in Canada, this truly is neither here nor there. We must ensure that women are not pressured into having abortions, but ultimately, their motives are irrelevant, for all intent and purposes. We cannot say that women have the right to choose unless we disagree with their motives.

I have had gay friends of mine — happily pro-choice otherwise — who got all agitated when I suggested that at some point down the track, if we had a prenatal test for sexual orientation, some women might choose to abort fetuses testing positive for future homosexuality. They suddenly thought there should be limits on women’s rights to choose. Hello … conservative Christian campaigners, there’s a whole new target group for your material, a new partner in arms so to speak, gays concerned about their future numbers — who would have thought.

Conservative MPs and anti-choice campaigners decided opportunistically to ride this wave, complaining about “female gendercide,” pretending that this is a human rights issue. Of course, this can only be a human rights issue if you already assume that fetuses somehow have sufficient moral standing to grant them human rights. This isn’t actually the case in Canada.

It would be nice if political campaigners were more transparent about their motives. Anti-choice activists have truly refined their campaign techniques with a view to generating empathy among the wider Canadian public. We shouldn’t fall for these tricks.

Udo Schuklenk holds the Ontario Research Chair in Bioethics and Public Policy at Queen’s University, he tweets @schuklenk.

When families refuse to accept catastrophic medical diagnoses

Here's this week's column in the Kingston Whig-Standard.

Tragedy often strikes unexpectedly. Over the last few months a number of cases involving catastrophic brain damage, usually as a result of surgery-gone-wrong, ended up in the news, for all the wrong reasons.

Typically they involve families refusing to accept the professional clinical judgment pertaining to their loved ones. Families insist that their loved ones’ bodies be kept functioning, the hospitals asking for permission to turn off the ventilators and other machines that keep these bodies ticking. More often than not these refusals to accept clinical, professional verdicts are related to strong religious beliefs held by these families. Invariably huge bills are racked up in the ensuing fights between the clinicians, the hospitals employing them and the families and their supporters.

Let me give you two very recent examples of irreversibly brain-damaged patients whose families are fighting tooth and nail to keep their bodies ticking. One case is Canadian, the other occurred in December in the United States. Both cases are ongoing as I write this. The Canadian case involves a patient in irreversibly minimally conscious state, the United States case involves a patient who is plain brain-dead. The former patient has no chance to recover from his injuries, the latter patient – by today’s medical standards – isn’t even a patient any longer, she is actually considered deceased.

The Canadian case

You might have heard about it. The Rasouli case, as it is called in legalese, has already led to a path-breaking court finding in the country. The story is about as tragic as they come. Rasouli, 61, migrated with his family to Canada from Iran shortly before he was in need of brain surgery. Complications arose and Rasouli is now in a minimally conscious state, irreversibly so. His continuing existence relies on a ventilator doing its job and feeding through a feeding tube. The attending clinicians believe that the right course of action would be to remove the ventilator and let Rasouli’s life expire. In their considered view he will eventually die from complications resulting from the various interventions required to keep his body alive.

The Supreme Court of Canada ruled recently that Rasouli’s doctors cannot remove the ventilator unilaterally and his family’s religious beliefs require that everything be done to keep his body alive. Reportedly the cost to taxpayers of the family’s demands has been a bill of about $3.5 million. Clearly this is a lot of money to pour into futile care. Money that could be utilized to reduce hospital waiting times, among other things. The Toronto Star reports that Rasouli’s family found him space in a specialized care facility where his care will cost the provincial taxpayers only a miserly $1,000 per day. Meanwhile the family is fighting hard to get taxpayers to also cover the accommodation cost of about $1,700 per month. Again, that’s a lot of public money to pour into futile care.

The United States case

As in the Rasouli tragedy this case also hit a family ‘out of the blue’ so to speak. The 13-year-old teenager Jahi McMath underwent surgery to remove her tonsils to address her sleep apnea. Something went badly and quite unexpectedly wrong. McMath was formally declared brain dead by a judge in mid-December. The United States being what it is, a court battle ensued. The family of the deceased teenager believes fervently in religious miracles and insists that their dead daughter is moved to a care facility willing to accept the body. Just to explain, neurological, or brain death, is a technical term for the irreversible shut down of the brain. It doesn’t mean that the body can’t be kept going for a few weeks, even months, before it eventually begins to decompose. Accordingly the family hoping for their miracle will be able to notice bodily twitches, sadly not dissimilar to decapitated hens jumping around on the ground until their body finally shuts down.

A care facility operated by a former owner of a beauty salon has declared its willingness to care for the deceased – oops, the patient’s – body. Only in the United States you say? That’s quite possibly so. There are further complications in this case, requiring that the hospital where the body is currently kept ticking undertakes surgery to prepare it for transport. Luckily for the parents, the United States is a deeply religious and not terribly science literate country, so donations are flowing in generously to finance the preposterous move to the ‘care facility’ operated by the former beauty salon owner. If this wasn’t all so tragic, you can’t help but wonder when this will be turned into a reality TV show.

Unlike in Canada, none of this is about tax monies. In this case private resources are being burned to essentially play around with a dead body. There are ethical issues about demanding that doctors undertake surgery on a dead person. There are also ethical issues about what we should reasonably be permitted to do with the bodies of our deceased loved one’s.

Leaving those issues aside, however, it seems to me that an unfortunate confluence of science illiteracy and religious belief motivates families unprepared for the unexpected demise of their loved ones to go to ever greater length to keep whatever is left of their loved ones around.

High-tech permits our hospitals to oblige them with remarkable results. The highest courts in the lands are breaking new ground with regard to what can and cannot as well as what must and must not be done with these corpses. I wonder sometimes – to the dismay of most of my colleagues – whether we got the ethics of these cases all wrong.

The real patients here arguably are not the deceased (or nearly deceased) ones but their family members. Perhaps we should consider accommodating some of their seemingly outlandish wishes to give them time to let go of their loved ones. After all, it is not as if the deceased teenager will suffer as a result of being put into the so-called ‘care facility’ run by the former beauty salon manager. There are difficult issues to be resolved involving the participation of doctors in activities that do not actually serve who they consider to be the patient. What should be clear, however, is that none of this could possibly justify expending huge amounts of tax payers health care resources on futile care activities, as is currently clearly happening in Rasouli’s case.

Oh yes, and perhaps civic lessons in science literacy might be a great idea.

The rise of humbug medicine

This last weekend's column in the Kingston Whig-Standard.

Calgary: In March this year seven-year-old Ryan Lovett died as result of cardiac arrest. His mother, after years of homeschooling her son, decided to ‘treat’ his strep infection not with antibiotics but with homeopathic concoctions and other herbal remedies.

The poor kid was bedridden for about 10 days and eventually died an entirely preventable death at the hands of his fanatic mother who had decided that her beliefs in homeopathy and ‘alternatives’ to modern medical treatments were more valid than scientific evidence. She has since been charged with criminal negligence and one can only hope that she will face the full force of the law for her omission to take her son to an actual doctor for appropriate medical care.

Tragic cases such as this are more commonplace than the more sane parents in our midst might think. Every other week such cases are reported from some place or another just in our hemisphere. No doubt there are many others who don’t even make it into the news.

It’s understandable that some people would grow weary about the integrity of pharmaceutical industry-sponsored clinical research and the medications that get subsequently approved on its evidence. Quite a few high-profile cases have made the news headlines over the years. Anyone remember Vioxx? Food and Drug Administration specialists in the USA estimated that this drug led to about anywhere between 80,000 and 140,000 heart attacks, of which a large percentage resulted in the death of the patient. There has been a lot of forth and back about the data and some suggestion has recently been made that particular patient groups could actually still benefit from this drug. Still, the baseline is that a lot of people died because the drug continued to be marketed when it was known that there were significant health risks attached to taking it.

What’s the difference between cases like the Vioxx scandal and homeopathic concoctions, herbal remedies, and whatnot? Simply put: putting your lives in the hands of purveyors of alternative, complementary etc. etc. ‘medicine’ is a bit like saying that given that modern medicine has its flaws, I’m switching to witchcraft. There is zero evidence that homeopathy works, or most of the herbal remedies that are also on the market. In fact, just this week a major study was released in the Annals of Internal Medicine, demonstrating that the vitamin concoctions that are sold to us in pharmacies and health food stores are completely useless. They are one of the reasons for why urine in our part of the world has been described as the most expensive fluid there is. We really simply release those vitamins and homeopathic concoctions right back into nature. Zero positive health effect for us.

In mainstream medicine at least we have a shot at rectifying mistakes. We have methods that eventually permit us to determine whether a particular drug works, and what its short-, medium- and long-term effects are. In hocus-pocus ‘medicine’ there isn’t even evidence – flawed or otherwise – when a concoction is given by a ‘practitioner’ to a patient. I am not suggesting that all those herbal remedies are necessarily useless. The reality is though, until they have been tested in methodologically sound clinical research nobody knows. Once they have been tested in a clinical trial and have been shown to work they cease to be alternative remedies. We call them medicine and you can get the prescribed by your doctor and some of them by some nurses.

Meanwhile in Ontario the association of naturopaths is lobbying the provincial government to regulate them as if they were a body made of professionals. They even lobby for the right to prescribe medication. For an organisation that’s representing a body of ‘practitioners’ who are overwhelmingly deeply skeptical of mainstream science and who consider the gold standard of clinical research, namely randomised controlled clinical trials, not very useful, that’s a bit rich. If you go to any of their ‘homemade’ colleges (they call themselves accredited but their accreditation is really by a body made up of colleges like themselves) you will come across a hell of a lot of unscientific nonsense. The principal idea here is a naive trust in nature’s ability to heal our disease-afflicted bodies. We are supposed to trust in our body's ability to heal itself.

Funny enough, they charge for advice based on that insight. Turns out, many more men than women follow this advice regardless of the existence of naturopaths and wait for their bodies to heal themselves. Their health outcomes are significantly poorer as a result of this. Men are much less likely than women to see doctors when they should seek medical care, hoping that their body will heal itself. That’s one of the reasons for why men die in the average about five years earlier than women.

In a rational world the naturopaths lobbying our provincial government would go nowhere. However, it looks as if they will become a self-governing health care profession some time in 2014, courtesy of our Regulated Health Professions Act. They will even have their own regulatory college, much like doctors have. This is completely bizarre. Doctors in Ontario are obliged to provide patients (as part of the informed consent process) with high levels of information about the evidence supporting the course of action they are proposing. The nature of naturopathic ‘medicine’ is such that there is no evidence worth the name that ‘practitioners’ can rely on during their consultation. Meanwhile they promise to manage conditions such as diabetes, cardiovascular diseases and so on and so forth.

What’s next, Ontario? A self-regulating College of Astrology? Welcome to Ontario 2014. Happy New Year!

Udo Schuklenk holds the Ontario Research Chair in Bioethics and Public Policy at Queen’s University, he tweets @schuklenk

'Tradition' doesn't constitute an argument in ethical conflicts

This weekend's column in the Kingston Whig-Standard.

I don’t know whether you had a chance to watch the musical Fiddler on the Roof. Tevye, the main character of the musical, tries to explain tradition in the opening song. And so it goes, “You may ask: How did this tradition get started? I’ll tell you. I don’t know. But it’s a tradition. And because of our traditions everyone of us knows who he is, and what God expects him to do.”

Traditions -- we come across them all the time, those time-honoured arguments for continuing along a well-worn path. Catholic bishops in the United States tell us that euthanasia is wrong, because, among other reasons, it violates medical tradition. Even the Canadian Medical Association, in a booklet published on the issue in 1993 traces some beliefs that are held strongly by some medical doctors on euthanasia back to tradition. It doesn’t take opponents of assisted dying very long to hark back to the unfortunate Hippocratic Oath that most medical school graduates are forced to take in grand ceremonies in some form or shape. These ceremonies are really quasi-religious activities where senior doctors (typically the medical schools’ professors) demonstrate their faith in their students’ ability to carry on the medical tradition. In turn, and because it is tradition, the students make wild and quite frankly oftentimes silly public promises including not to participate in what we would describe today as surgery.

Not a big surprise really, considering that this Oath got started some 2,500 years ago, likely by a Pythagorean cult. Since then the oath has been issued in revised and modernised versions by various medical associations and other interested groups. Some of the original content of the oath survived though, namely content including prohibitions on abortion and euthanasia. As it is with such documents, no reason for this is given, beyond the exhortation on doctors not to provide such services to patients.

Of course, the oath really was a reflection of particular values held by a smallish cult in Greece a very long time ago. Why in today’s day and age medical doctors who are not Pythagorean (i.e. pretty much all of them) should abide by such values is unclear. This is particularly true for Christian students, if the history of battles between Christians and Pythagoreans is true, where reportedly Christians eventually burned the Pythagorean temple to the ground and destroyed the cult for good. It is also unclear why students who wish to practice medicine should have to take any such oaths to begin with.

A colleague of mine who teaches in a medical school introduced to his students a whole range of competing ethics codes for medical graduates and then asked them to pick the one they would be most comfortable taking their oath on. Not unexpectedly the whole gamut of ethical convictions unfolded. The students in that particular medical school hailed from all corners of the world, and so were the choice of oath they picked. At least they believed that there is value in taking such oaths to begin with. It’s probably a traditional thing. Today these oaths are frequently used by medical doctors to pick and choose ‘traditions’ they like and traditions they dislike. Surgery they might do, abortion – not so much, you get the drift. The randomness of it all is reason for concern, because their decisions are not actually derived from their traditional oath, but from other value systems that are then projected into the bits and pieces of the oath that are wheeled out to ‘justify’ this, such as the stance on abortion, euthanasia, IVF and any number of other ethically controversial medical issues. It turns out tradition isn’t even a justification for anything.

Exactly the same phenomenon crops up in debates on marriage equality. There is even a Facebook group ‘1,000,000 for traditional marriage’ which garnered support from less than 50,000 people worldwide. Traditionally marriage was a one-man-one-woman thing, ergo, so goes the argument, this is how it should be like today. Well, it doesn’t take much to realise that there is no ergo justifiable here either. Nothing follows at all from the fact that we do certain things today, or from the fact that we did certain things in certain ways in the past, for how we should do things from today onward. The point I am making here is that arguments from tradition have zero substance as arguments. They are non-arguments. Each time someone tells you that you should do a certain thing because of tradition, it’s best to tell them to go away and get a life. They merely describe what we have always done or what we have done over extensive periods of our history. If that was sufficient, we could justify slavery. After all, if we bought and sold other people for such a long time, surely it’s a tradition of sorts. The fact that there was such a tradition doesn’t provide us with any moral guidance with regard to what we should do in the future.

Now, to be fair, conservative thinkers like Edmund Burke pointed out why traditions might be valuable. He claimed that traditions provide societal stability and security. Clearly there is some usefulness in societal stability and security. That argument then isn’t any longer about whether there is a good reason to keep some tradition going. That argument simply warns us of ominous consequences if we don’t keep traditions going. The truth is, of course, that even conservatives need societal progress to occur, lest their societies would otherwise be frozen in time, eventually losing out to more agile competitors on the global stage. So they are back to square one so to speak. Even they need reasons to justify particular traditions if someone clamours for particular changes to how society goes about doing business, or how doctors go about doing medicine, etc. Unless there is a good reason beyond the fact that something is a tradition we should probably be prepared to abandon traditions more frequently if we are given good reasons for doing so.

Udo Schuklenk teaches ethics at Queen’s University, he tweets @schuklenk

What to do about science denialists

This week's column from the Kingston Whig-Standard.

One of the privileges that comes with being an academic is that one is comparably mobile, the world really is one’s job oyster.
I chose to work between 2000 and 2005 in a medical school in Johannesburg, South Africa. Sub-saharan Africa at the time was the world’s region worst hit by HIV and AIDS. At a time when HIV infected people in the West got used to the idea of living to old age, people around me literally were dropping like flies. Talk about culture shock! In the condo-complex where I lived, several of our staff members died preventable AIDS-related deaths. One of my staff member’s life-partner died from AIDS, too. He had just matriculated from college.

Many of our students were infected and discussions began in the university whether we had a responsibility to sponsor medical insurance to ensure their survival while they were enrolled with us. To the outsider this might look like an issue best understood as people in the developing world being unable to afford access to life-preserving medication. And, to be fair, the price tags of essential medicines in many developing countries remain unacceptably high. However, this is not what actually caused in excess of 360,000 entirely preventable HIV-related deaths in South Africa.
The country’s president at the time, Thabo Mbeki, and his health minister, Manto Tshabalala-Msimang subscribed to wild conspiracy theories involving Western agencies wanting to crush African people’s aspirations. In their paranoid world AIDS medicines were a means to poison Africans. HIV was not the cause of AIDS, and AIDS didn’t quite exist as a new disease. They duly found a high-profile, ironically white, United States academic and a few of his, ironically white, allies to confirm their worst fears. Being the country’s president, Mbeki quickly set up a presidential expert panel involving mainstream scientists and a bunch of denialists. A funny idea to create a sparring match between discredited academics and mainstream academics and encourage them to entertain your paranoia. Mbeki clearly thought that a scientific consensus is reached not by evidence but by discussion and some kind of compromise (as if HIV could cause AIDS just a little bit, depending on the compromise reached).

Well, Mbeki and his side-kick Tshabalala-Msimang enforced policies aimed at keeping as many impoverished South African AIDS patients away from life-preserving medicines as was possible. HIV infected pregnant women were not given access to medicines proven to drastically reduce the risk for their newborns to be HIV infected. Thousands and thousands of HIV infected newborns came into this world as a result of these crazy policies. A Harvard University study estimated that in excess of 360,000 South Africans died preventable AIDS deaths during Mbeki’s reign. Some of the medical doctors in public sector hospitals who prescribed and provided AIDS drugs to their infected patients were disciplined by hospital managers carrying out the health minister’s orders.
Ask yourself how the world would have responded if such genocidal policies had been implemented by the apartheid regime preceding the ANC government that’s running the country today. No doubt international bodies would have busily prepared genocide charges. No doubt international campaigns would have got off the ground blaming the racist government for the preventable deaths of such a large number of South Africans. A black politician with liberation credentials presiding over what could demonstrably be described as genocide barely led to people batting their eyelids. Human lives clearly remain cheaper even today in that part of the world than elsewhere. Another, even crazier, head of state, Gambia’s president Yahya Jammeh insists that a herbal concoction he invented cures AIDS. Foreign aid workers disbelieving the story end up being kicked out of the country, and any Gambian criticizing his take on this medical problem end up in jail. Meanwhile Jammeh instructed HIV infected people to stop taking AIDS drugs.

What bothers me greatly is that government policies leading demonstrably to large numbers of preventable deaths remain unpunished. It is one thing if Mbeki had said that his government decided not to provide AIDS drugs due to their high cost. If you don’t have the resources to treat everyone it is fair game to allocate resources. But denying access to life-preserving medicine to large numbers of impoverished South African public sector patients because of truly crazy ideas about Western conspiracies is surely something else. Yet Mbeki walked away, enjoying today his generous retirement pay-out. His alcohol guzzling health ministerial side-kick died eventually of liver cirrhosis. Even there she remained true to her unethical form by jumping the queue toward a donor liver.

Well, enough on AIDS. This week United States talk show host Katie Couric used her show on national TV to peddle nonsense about the HPV vaccine. In Mbeki style she juxtaposed scientific mainstream views with anecdotes supplied by vaccine critics. The impression created was that there is a genuine debate, that there are genuinely two sides to this vaccine, when patently there are no two sides. While some of the stories presented were genuine human interest stories, they showed nothing relevant at all with regard to the safety and efficacy of this vaccine. It was clearly irresponsible of Couric to give a high-profile stage to quacks promoting their anti-science agendas. Almost certainly as a result of her action people who would clinically benefit from getting vaccinated won’t get vaccinated. Some of these women will eventually go on to develop cervical cancer. Is it acceptable, for the sake of ratings to promote quacks’ views on national television? I doubt it.

To be fair, Couric’s case is different to Mbeki’s actions. Women choosing not to get vaccinated did it on bad information they received through her TV show. Arguably women making such important health care choices would do better than to listen to anecdotes on a talk show when making important health care related choices affecting themselves. Let the buyer beware, as the old Romans said. On the other hand, the impoverished HIV infected South Africans depended on the national health care system to deliver life-preserving medicines. They did not have the luxury of choice to begin with. So, while the blame for bad choices in Couric’s cases arguably should be shared between those who act on anecdotes heard on her talk show and those who produced the show, the blame in South Africa falls squarely on Mr. Mbeki’s shoulders. Remarkably until today he was neither prosecuted nor did he ever utter an apology for the genocidal policies he presided over.

Udo Schuklenk teaches bioethics at Queen’s University, he tweets @schuklenk.