Summer update on various projects

Apologies to everyone checking in every now and then regarding new posts. I have stopped writing my weekly column for the Kingston Whig-Standard, mostly because management changes meant my weekly weekend spiel became a whenever spiel. Their prerogative, didn't work for me tho, so I quit. Still, you can see that once the pressure is gone to produce toward the end of the week your 750-1000 word text for public consumption, the odds are you won't (not while the World Cup is on anyway). 

That being said, I have not been entirely lazy either. I produced a piece on assisted dying in Canada for a Canadian journal. Also completed a piece for a US medical journal defending infanticide for certain cases of very severely disabled newborns. A lengthy piece I wrote with Erik Zhang on obesity ethics is stuck in the review process of an unnamed journal in another part of the world. Will see what comes of that one. What else, oh yes, right, I also wrote a paper for a US bioethics journal that I promised I would not write again for. It's part of my let bygones be bygones exercise. They invited me kindly to write on a topic that has remained dear to my heart ever since I worked on this in my doctoral thesis about 2000 years ago, namely the issue of providing access to investigational new agents to people suffering from catastrophic illnesses. It's a topic that pops back up in bioethics papers every few years. I'm glad it's not dead, because there's serious work to be done, certainly on the regulatory frontiers.

I am currently sitting with Suzanne van de Vathorst on a paper discussing treatment resistant major depressive disorder and assisted dying. That's it on the articles' frontiers. 

I have complete work on the significantly revamped 3rd edition of Bioethics - An Anthology that I am jointly producing with Helga Kuhse and Peter Singer. New sections, new content, new section introductions, you name it, we did it. It's all off to the publisher, and they've begun a few weeks back gathering those precious reprint permits. Wiley assumes it should be out by August 2015. Buy it so that I can buy a bigger house! Just kidding :).

I have been a laggard on two other book projects, I should have delivered This is Bioethics by about this time to Wiley but I told them we'd be done with it closer to the end of the year. Ruth Chadwick, my friend and colleague at the helm of Bioethics (the journal), has agreed to jointly author the book with me. We agreed about two weeks ago on the 'who does which chapters' and writing continues in all earnest. The good news, I'm a a bit ahead of her, having done major chunks already.

Not so well fared another project, also for Wiley, Global Health Ethics that I am to produce with Christopher Lowry. We are well behind (well, I am), but we'll be getting there once This is Bioethics is out of the way.

Meanwhile at Bioethics, the journal is happily ticking along. All sorts of upheaval at the publisher's end, new editor at their end, production editor's responsibility shifted from the publisher's Singapore office to its Manila office, but truth be told, this has close to no impact on our operations. We have exciting special issues lined up, so stay tuned for more to come. Which reminds me, I need to do an editorial by the end of August for our October issue. Topics galore I suppose. At Developing World Bioethics  we are doing very well, too, thank you very much. If anything, we're struggling with our page budget. By now we got a 2 year back-log from acceptance to print, which is really not good enough. The only reassuring thing is that we also offer Early View publication with fixed doi number for your article, so accepted content gets published for all academic intent and purposes within weeks of acceptance, it's just that there's a wait for getting the content eventually into a print issue. It looks to me as if print-copy is on its way out for our journals, given that most people these days access the journal on-line only. Good for the environment, not so good for me, I love print-copy. 

Last but not least, at the time of writing there has been a bit of a storm-in-a-teacup about an experiment researchers did over at Facebook, and had the tenacity to publish in the PNAS. Some of my colleagues (you know which ones, those that always are on the ready when the papers, TV etc call, even more on the ready than I am - do they ever sleep?) went on a rhetorical rampage condemning the trial, there's talk of Tuskegee and Mengele, egregious wrong doing, ethical misconduct and so it went. Well, I think they got it terribly wrong, and with a bunch of other bioethicists we drafted a public response that we're hoping to place soon. I will post more on this when it's out. 

What should we do about severely impaired newborns?

My column from the Kingston Whig-Standard of May 10/11 2014

I was invited last week to be part of a panel discussing whether doctors should be permitted to actively end the lives of certain severely-impaired newborns with parental consent.

The host of the debate was a prestigious thoracic surgery society. The problem, simply put, is this: Every year a small number of fetuses are carried to term who have no reasonable chance of living a life worth living. They are so severely impaired that they will live a miserable, short life until they eventually expire. The good news is that, courtesy of prenatal screening, only few such births take place and the numbers are decreasing. We have some data from the Netherlands, where a few hundred out of about 200,000 newborns annually tend to fall into this category.

Well, the topic of our debate was a dicey one. We were given a scenario whereby the child’s prospect were sufficiently miserable that the attending doctors suggested to parents – among other options – the withdrawal of nutrition and hydration while providing palliative care to ensure the newborn does not suffer unnecessarily, as well as active euthanasia. The outcome of both scenarios: the death of the child. The jurisdiction where our case played out permitted the active ending of the newborn’s life.

One of the reasons for why we feel uneasy, to put it mildly, when we discuss what to do about severely impaired newborns, is, of course, that unlike adults in comparable circumstances the newborns do not have the capacity to make their own choices. In fact, the newborns’ developmental state is such that they don’t even have the capacity to desire continuing life. Would it make much sense to undertake significant surgery with the – unlikely but possible – result that the newborn might live a miserable life for another year or two before his impairment eventually catches up with him and kills him? Should we withdraw nutrition and hydration while providing palliative care so that he doesn’t suffer? Should we actively terminate his life to end his nightmare quickly and painlessly, as well as that of his parents? In our scenario the parents asked that their son’s life be ended quickly and painlessly. Should the doctors oblige them, was the question we were asked to address.

On the one hand we have – typically – religiously motivated opponents of euthanasia for severely impaired newborns. The distinguished theologian panel member who I debated argued that we should let nature takes its course, that we should provide clinical care not aimed at shortening the newborn’s life and that we should eventually let nature takes its course. The problem with the nature-takings-its-course argument is that we invented medicine to stop or delay nature from taking its brutal course. So, the letting nature take its course argument was a non-starter.

My opponent also argued that we should ask ourselves whether we would want to live in a society that terminated the lives of such vulnerable newborns. That’s a good question to ask as it forces us to think more carefully about the values that are at stake in such situations. If we merely go by the newborn’s quality of life and life prospects it seems indeed best to end the unfolding tragedy sooner rather than later, but probably a decision should be arrived at with parental consent as opposed to against the unfortunate parents. It turns out that one can reasonably answer the rhetorical question of whether one would want to live in a society that terminated the lives of certain severely impaired newborns if one held the view – as I do - that the newborn’s current and future quality of life is all that matters here. I could live in such a society where empathy for human suffering trumps religious conviction.

This view, in turn, requires us to rethink how we go about doing medicine, at least to some extent. It would require us to give up on what is called the sanctity-of-life doctrine in medicine and replace it with a quality-of-life ethic. There is no point in maintaining human life for the sake of it if that human life cannot enjoy a moment of its existence and is trapped in a never-ending cycle of immense pain and suffering. A quality-of-life ethics would not merely ask ‘do you exist’, but ‘do you have a life worth living?’, or ‘will you have a life worth living?’ We are not there yet, but significant changes in this direction are occurring in many countries.

My esteemed colleague also suggested that the infanticide proposition violated human dignity. It’s a strange thing this ‘human dignity’ rhetoric. If you were to ask yourself whether human dignity is important, you’d almost certainly say that it is. We all want to be treated with dignity. In my field, in medical ethics, you can find boatloads of declarations and guidelines having the dignity moniker included for good measure. Surprisingly though, when you look closer at it you will discover that this is about as question-begging a term as there ever was. It has actually no meaning in its own right. For Catholics human dignity means living by Catholic values, to Muslims it means living by Islamic values, to secular folks it could mean living by secular ethical values, and so on and so forth. Typically, when it comes to controversial ethical questions, human dignity is deployed to hide those actual values, mostly because they are likely to be more controversial than to just say ‘human dignity’. So, the long and short of it is, in the discussion about the severely impaired newborn, human dignity gives us neither action guidance nor action justification. A couple of years back, the judges on our Supreme Court, when looking at the euthanasia issue, also availed themselves, among other reasons, of the human dignity trope. It tells you something that both sides used it and neither side could show that their opponents just happened to use it wrongly. To the theologian I debated it was clear that euthanasia would violate human dignity because of his religious views on end-of-life matters. A secular ethics person could well conclude that human dignity was violated by not permitting euthanasia. So, we were non the wiser. Well, more to the point, we agreed to disagree.

What would your preferred policy on severely impaired newborns look like?

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

What kind of doctor do you want?

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

It might sound like an odd question: "What kind of doctor do you want?"

But seriously, if you could choose, what qualities would your ideal doctor have? Well, for starters, we would want them to be clinically competent. Seems obvious, you say?

You’d assume that all registered doctors in the country are clinically competent.

But that’s about as likely to be true as saying all engineers and all architects are competent at what they do. There are invariably great variations among doctors. Still, let’s assume your family doctor is a good technician as far as your body is concerned. Would that be it? Probably not.

The doctor-patient relationship has changed in dramatic ways during the last few decades. In the not-so-good old days, doctors would have thought nothing of it when they withheld vital information from you that would have been relevant to your decision-making.

If different courses of clinical care were available, they would have picked the one they thought would have been the most appropriate. The odds are that they would not have consulted you about the pros and cons of the potential courses of action. After all, doctor knows best, or so they thought.

Well, during the late '60s and '70s, patients didn’t take that attitude quite lying down. They also began to disagree with many doctors’ take on abortion, contraceptives and other matters. Whether an abortion was acceptable or not in particular circumstances turned out to be anything but a professional medical judgment. As patients, we asserted our control over our own bodies against doctors who thought they knew best.

Thankfully, that quasi-religious symbol of doctors’ supremacy over our bodies, the white coat many doctors chose to wear at work, fell by the wayside, too.

There was a flip side to this victory, though. Doctors were now required to share with us information that an imaginary reasonable patient would like to know about. And they were supposed to do it in a way that this imaginary reasonable patient would be able to comprehend and make sense of.

Well, in reality, there is no such thing as a reasonable average patient. Take me, for instance. I’m good with any information my family doctor throws at me about anything pertinent to making a considered choice about available treatment options.

But, try the same scenario at the dentist and I’m anything but reasonable. I still recall that dentist who had invested oodles of money into equipment that permitted her to produce a video of her checkup of my teeth. She then proceeded to show me what she found on a giant monitor.

This was all as well-intentioned as it gets, plus, no doubt, it was charged for, too. How could I make a considered choice on what I would want to see done without knowing what was going on in my mouth? Good point, you say? Well, reality check: I was shocked enough to never go back to her. I didn’t want to know, didn’t want to see.

All I wanted was for her to get on with what needed to be done, and do it as pain-free as possible. My partner, on the other hand, would have enjoyed the video and the grizzly detail of what was going to happen.

These days, I shop around until I find a dentist not insisting on debating endlessly the pros and cons of options. For better or worse, these conversations are deeply distressing for me. I don’t consider it a benefit to have to endure such discussions, at least not while shaking in my boots at the thought of the inevitable pain associated with dental surgery. I’m a wimp, I know, but for better or worse, there are plenty of folks like me. The revolution that has taken place on the health-care professional patient relationship wasn’t straightforwardly better for everyone in all circumstances.

A clinician-blogger in the U.S. has asked his Twitter followers what other competencies they expect of their doctors. It’s quite a lot, ranging from empathy to good listening skills to compassion to whatnot else. Some of the skills on the patient wish list are actually important, such as good listening skills.

You better listen carefully to what your patient is telling you, lest you miss an important detail that could change the nature of your diagnosis. I completely understand the need for an empathetic doctor, but I wonder – just between the two of us – whether it might suffice if doctors faked empathy.

Yes, we would ideally want to feel cared about, but think of what it means for a doctor to be truly empathetic to the suffering of every individual patient. It’s seems an unreasonable demand on any human being to cope with.

Interestingly, unlike the people who answered the Twitter invite, my biggest concern is that doctors simply be professional in their interactions with patients. This means that they keep their private lives out of their practices. God doesn’t belong there, neither does their political party affiliation or anything else that’s irrelevant to their service delivery. You would be surprised how many doctors believe it is entirely appropriate to inflict their religious convictions on their patients, regardless of whether their patients share these convictions or not. I don’t need to know, for instance, that your god disapproves of my atheism, my sex life, my drug-taking habits, and whatnot else. Your insistence on displaying such symbols at work makes it more difficult for me to communicate pertinent health information to you.

We even have plenty of data to support this claim. You would think that doctors truly caring about the health outcomes they deliver would take such information into account and adjust their behaviour accordingly. Many do not.

So, my good doctor is able to talk to me in such a way that I am comfortable sharing relevant health information with her. She tries to clarify well in advance of a potentially bad diagnosis how I would like bad news to be communicated.

She also is capable of explaining different treatment options to me in a manner that permits me to come to a conclusion on what course of action I’d like to follow, that is unless she’s a dentist, then I would really rather not. She also knows that different ways of communicating information could manipulate me unacceptably. Mortality instead of survival frames often result in different choices by the same patient, even though the facts remain exactly the same. Not unimportantly, she understands the difference between a clinical judgment and her own moral convictions.

What’s your ideal doctor like?

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

Even more ways of making babies

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

You might have thought that the reproduction revolution had arrived and ended with the birth of Louise Brown, the world’s first known IVF-generated baby.

She was born on July 25,1978. Louise Brown got married in 2008 and has since given birth to two children of her own, not conceived by means of IVF. In those days religious campaigns against IVF were running in overdrive. It was said that IVF babies would be discriminated against, IVF was somehow unnatural, IVF babies would be horrified and suffer dramatic psychological harm once they found out how they came about and the list goes on. None of these predictions turned eventually out to be true. Today opposition to IVF is pretty muted, and often it is predicated on concerns about the cost involving in making such babies.

After that we had a short upheaval caused by our successful attempts at cloning higher mammals. Humans are higher mammals, so if we can produce sheep, and even primates, there is no in-principle reason why we shouldn’t be able to do the same with humans. This would have been a neat tool to weed out all sorts of genetic diseases, but the international outcry was such that human reproductive cloning suffered a stillbirth. The moral panic was pretty much manufactured by religious organizations such as the Vatican. A thoroughly misinformed public feared cloned Hitler-type armies as opposed to a surplus of Claudia Schiffers and Albert Einsteins, stuff like that. These were implausible scenarios anyway.

To be fair, there were also some concerns that could not be brushed aside that easily. It took a lot of miscarriages and seriously disabled sheep to produce Dolly the first cloned sheep at the time. Not unreasonably some opponents of reproductive human cloning wondered aloud whether this would be a price worth paying. Still, one more time religious opponents trotted out the well-worn tropes deployed during the culture wars on IVF. Cloned people would be discriminated against, cloning is unnatural and cloned people would suffer psychological damage on discovering that they’re clones. Critics also showed a remarkable lack of understanding of what gives us moral and legal standing. Some suggested the cloned humans would eventually be abused as involuntary organ sources. That is about as implausible as suggesting that IVF babies could be used for that purpose. For better or worse, birth establishes today a right to life and bodily security in modern democracies.

Fast-forward to 2014. Reproductive health research has thrown up yet more potential means of human reproduction. The news headlines were all over it: We are actually able to produce three-parent babies. Well, kind of. The clinical objective here isn’t to enable three-people relationships to produce a joint child. The objective is to reduce the occurrence of genetic disease. The New Scientist explained a decade ago as good as anyone what’s involved: ‘The procedure would involve fertilising a woman's egg by in-vitro fertilisation outside the body and transplanting the fertilised nucleus to an egg from another woman which has had its nucleus removed. Any child born following implantation of such an embryo would have cells containing a nucleus with genes from both parents, and mitochondria from a woman other than their mother.’ That was then, today this technology is ready to be used.

At this stage, I’m sure, you won’t not be terribly surprised to learn what ‘ethical’ objections have been deployed against this procedure: It goes without saying that it is 'unnatural,’ that it goes ‘against God,’ and, of course that old chestnut about myriad psychological problems the off-spring would suffer from.

My colleague Francoise Baylis at Dalhousie University raises a number of more serious ethical objections. Among other concerns she warns that there are risks to the egg donors. The procedure involves hormone injections. These injections ‘can result in cramping, abdominal pain, nausea, vomiting, bloating, mood changes and irritability. More serious potential physical harms include rapid weight gain and respiratory difficulty, damage to the other organs such as the bladder, bowel and uterus, decreased fertility, infertility and life-threatening haemorrhage, thromboembolism and ovarian, breast or colon cancer.’ Now, it’s one thing if you accept such risks for yourself because you want your own genetically linked child, but it’s quite another if this happens in order to support someone else’s desire to have their own genetically linked child. This argument still begs the question, however, why should we assume that women considering getting involved in such a manner somehow have no, or such seriously impaired, agency preventing them from making their own informed, voluntary choices that we should prohibit such technologies. Baylis also wonders whether this kind of research should be a priority, given competing global health needs. I think she is correct on that count. This kind of work is probably best characterized with the hashtag #richpeopleproblems.

Would future children conceived by such means be harmed or in some other way wronged? The long and short of it is that that isn’t the case, and here is the reason why: The only prospective parents who would avail themselves of such technologies are people who could not conceive their own genetically-linked child otherwise or who would face a high risk that their future child would suffer from a devastating genetic illness. A child born as a result of the described mitochondrial replacement technology would have to ask herself whether her existence is preferable to not existing at all, or existing with an illness that would render her life truly miserable and likely brief. The answer to this question seems like a no-brainer to me. Interestingly, British Columbia’s Family Law Act is ahead of the curve on this. It permits three-parents to be listed on children’s birth certificates already.

The human reproduction revolution continues.

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

On academics blogging, writing newspaper columns, stuff like that

Should academics maintain blogs and do newspaper columns? If we decide to do so, should we insist on getting paid?

During a conversation I had with an academic at a top Australian research university he mentioned to me a colleague who he thought had burned-out as a serious researcher and who tended to spend his while writing newspaper columns and blog entries as opposed to doing serious work. He clearly didn't approve of academics spending their valuable and usually well-paid time writing content for blogs such as this one.  So, should we bother?

I got to be honest, academics working in areas that are of interest to the wider public should share their insights with that wider public. Say if you work on climate change in environmental science, or you work on obesity prevention, surely you have an obligation to inform the taxpayers that fund your job about your findings. Hiding your research outputs exclusively in highly specialized academic journals with their few hundred readers per average article output, seems almost irresponsible. It makes sense to maximize the impact of your work,

You'd object and point out that nothing stops you from doing other kinds of media work. Why not talk to journalists and let them repackage your research professionally. After all, unlike us academics they are trained at least in producing readable content. Well, truth be told, that's not exactly a risk-free activity. Often you talk to journalists for 30 min or longer over the phone and their 2 line quote manages to miscommunicate what you have been on about completely, or to a significant extent. Writing your own stuff means taking control of your public messaging.

Some have lamented that too many academics write these days free of charge for sites like the Huffington Post, thereby destroying journalists' jobs. I have got to be honest, I sympathize with this concern. I have, in the past, written free of charge for papers like Toronto's Globe and Mail or The Conversation. I have also written for The Guardian, but being the paper that it is, it paid without me even asking for it. I would probably still write free of charge for non-profit outfits like The Conversation. However, I think it's problematic to write free of charge for commercial outlets. It messes up the market for these sorts of creative outputs. It's also problematic because you subsidize with your freelancing the columns of these papers' staff columnists, some of whom are, well, dreadfully uninformed at the best of times.

I have accepted last year an invitation to write for the Kingston Whig-Standard, the local outlet of a massive conservative Canadian media conglomerate. The that time editor of the paper offered a column on anything I fancied writing on and a smallish fee. To that deal I agreed. It wasn't so much about the money, to be honest, because after paying taxes, it's really more of a token of gratitude than actual pay. The principle though, that you should get paid for such work is right. It's quite ok if the paper at one point tells me to go away and reallocates their limited freelance writing resources to another writer. That that person should then also be paid for their work is only right. Incidentally, that's why I have never written for the Huffington Post. It's also the reason why I hold newspaper subscriptions. People producing original content for your consumption should be paid.

It's funny how that column writing venture panned out. The paper (initially unbeknownst to me) enters my columns into a pool of content produced by any number of other freelancers and on a few occasions my columns ended up being reprinted in other papers owned by said conglomerate. Some probably saw more readers than my piece in the Toronto broadsheet. The paper also puts up the columns on its website. Initially they tweeted my columns but that has since ceased (I do that myself now, big deal). To my surprise, despite the smallish print circulation of the paper, my content also ended up with a reasonably wide reach. Nothing comparable to The Guardian, but still. I discovered that folks in Thailand had once a lively discussion about one of the columns. You never know where this stuff ends up! - The other week I ended up in the cinema. An elderly man sitting right beside me, whom I had never before seen in my life, thanked me for writing the columns. Apparently he is looking forward to reading them every weekend. Well, I'm sure there are also folks that really dislike them. It's inevitable.

Talking about reach. Yes, I tweet links to my columns and share them on google+. My tiny twitter followership is still tiny by Justin Bieber standards. It went from 70 or so to a bit under 300 people these days. Among these people though are a bunch of influential tweeters. If any one of them retweets links to my pieces they quickly attract a significant number of additional readers. The flip side is that there is plenty of sneering and one-line commenting on such occasions that one cannot reasonably and intelligibly respond to. - How a US Member of Congress ended up amongst my followers? Who knows. May be join him to find out whether it's quite worth it :). I'm @schuklenk

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.

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