Saturday, April 19, 2014

Compulsory child vaccination and the conscientious objection business

Ontario’s health minister Deb Matthews announced this week that she is adding three further diseases to the list of illnesses against which children in the province must be vaccinated. It’s mandatory. Her move has been widely lauded by public health experts and medical ethicists. We have seen in recent months outbreaks of preventable illnesses in communities with unusually low vaccination rates. You might recall the most recent outbreak of measles in BC’s Fraser Valley where more than 200 children came down with the measles. The situation seems directly linked to a community objecting to vaccines on religious grounds. Don’t think of measles as a harmless kind of infection. More than 100.000 children die each year worldwide of this entirely preventable disease.

Why on earth would parents not wish to protect their children against a serious infectious but preventable disease? Well, some parents likely will simply forget, or think that it’s not that important. After all, if we have herd immunity you can with reasonable confidence become a non-vaccinated free-rider on your responsibly vaccinated fellow citizens. However, if lots of us choose to become such free-riders the risk of a disease outbreak increases quite dramatically. It’s simple maths really. In any case, it is probably fair to say that not getting your children vaccinated simply because you were too lazy or too selfish, aren’t terribly good ethical justifications for your omission to get your kids vaccinated.

Another possibility is that you belong to those misguided parents out there who have decided, typically based on conspiracy websites that I won’t even be mentioning here, that vaccines do all kinds of evil things and really you mean to protect your child from these evils. No doubt you’ll mention autism as an example of the evils caused by vaccines. Well, let me just tell you that the only peer reviewed research output supporting these claims has since been withdrawn by the journal that published it initially. The researcher who wrote the piece was found guilty of misconduct by a statutory medical council. Shown to be a fraudster he was barred from ever practicing medicine again in Britain. He still remains the posterboy of current-day anti-vaccine activists. What better hero than a medical researcher ‘censored’ by the ‘establishment’. In light of this, to my mind, it makes perfect sense for governments to protect children from parents prone to listening to conspiracy theorists. This is so because if you choose to run with the views of one convicted fraudster against the rest of the biomedical and public health research establishment you haven’t quite done your due diligence. It is that simple.

Let’s assume you’re neither too lazy to have your kids vaccinated nor prone to buying into, however ludicrous, conspiracy theories. What’s left? Funny enough, there is a reason left to you that our health minister (no doubt based on good legal advice) thinks is an acceptable reason. Deb Matthews notes that it could be acceptable for you to object on grounds of conscience, or, as she describes it: religious or philosophical reasons. Fair enough, you need to make your case and apply for an exemption. But, what kind of religious reason could that be? That your god kind of had it in for your kids and that if they catch the measles (and pass them on), it’s ‘God’s will’? Or is the idea that because your imaginary friend in the sky is defined as ‘perfect’ by you, and that that perfect being would not create us as anything other than perfect. So, why bother with vaccines then? Is that it?

I’m flabbergasted about the tolerance we show toward folks objecting – against all the available evidence – to the compulsory vaccination of their children on religious grounds. They are not only risking their children’s health, they are also risking other people’s children’s health. There are always kids who suffer from a weakened immune system or who suffer from illnesses (such as cancer) that do not permit us to vaccinate them. They are put at grave risk by conscientiously objecting anti-vaccine parents.

What’s bothersome here is that, as a society, we ultimately prioritize the value of the parents’ religious convictions over their children’s well-being. I cannot see how that could possibly be ethically defended. Are we really saying that people’s clearly mistaken views about the universe matter more than the well-being of their children – and, indeed, that of other children? That’s what Minister Matthews’ religious and philosophical exemption clause ultimately boils down to. It is one thing to permit legally competent adults to make such choices for themselves, provided they are the only ones seriously affected by the consequences of their actions. Adult Jehovah’s Witnesses come to mind. If they wish to refuse life-preserving blood transfusions and bet on their imaginary friend in the sky, we should respect their choices, however, if they wish to place that bet for their vulnerable children, then surely society needs to step in and protect those children. The same holds true for children whose health is gambled with by their anti-vaccine parents. We should not tolerate religious cop-outs anymore than we tolerate parental convictions based on nonsensical conspiracy theories. Irresponsible parental conduct that is putting their children’s well-being at risk does not deserve societal accommodation.


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

Sunday, March 30, 2014

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.

Friday, March 28, 2014

Why we should pay for news



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

The other week I got a message from someone who is looking forward to reading my weekly columns. She told me how glad she was to find out that they’re available free of charge on the newspaper’s website, so she wouldn’t have to pay to buy it. I was dumbstruck, to be honest. Much as I liked hearing from a reader who is looking forward to my writings, didn’t it occur to her that these columns don’t come cost neutral? That someone, somewhere would have to pay for them?
Newspapers, I’m telling no secret here, are dying left, right and centre, and not only smaller papers like the Whig-Standard are an endangered species, even bigger papers seem on their way out. Newsrooms across the nation have lost a large number of journalists to cost-cutting exercises. The working conditions of journalists – they were never great to begin with – are truly appalling. Job security in this industry is abysmal at the best of times. As a result, most newspapers aren’t what they once were in terms of quality. To create economies of scale larger publishers like Quebecor gobbled up smaller papers like the Whig, the London Free Press, and the list goes on. As a result we end up with local newspapers that are barely recognizable as local newspapers.
Why did this concentration of media ownership occur in the first place? Economies of scale had to be created, mostly because of the internet. The internet with its seemingly free provision of news content 24 hours a day discouraged many of us from renewing our newspaper subscriptions. Young people have grown up without a daily newspaper in their homes. They check quickly what the Huffington Post offers free of charge on-line, skip over to a celebrity gossip sites like TMZ, and that’s it for the day. No need then to pay for a local paper. In these outlets the difference between reporting and opinionating has become sufficiently blurred today as to have become a problem in its own right.
I do think this has very serious consequences for local democracy. Local newspapers are the only instrument really that permits us to keep our local councilors, as well as provincial and national politicians accountable. Full-time local journalists are needed to investigate and report what is happening in our community. We cannot just rely on volunteer bloggers to fill that gap. Talking back to Mayor Mark Gerretsen on his Facebook page isn’t quite the same either. So, there’s a first reason why you should subscribe to a local paper.
The same holds true for national broadsheets, too. The Globe and Mail is struggling badly and has been struggling financially for quite some time. It has asked journalists to take unpaid leave during the summer period last year to save money. The editor-in-chief was sacked  unceremoniously this week. The paper has recently introduced a paywall to ensure that people eventually pay for reading its content. The company also took a hit on the credibility front when it decided to keep on staff a columnist accused of repeatedly plagiarizing in her columns. It’s not quite clear to me who would want to pay for that. I’m not sure how that pay wall experiment will pan out, but good luck to them. The Guardian in the UK tried the opposite. It gives its news away free of charge through its website and hopes that eventually it’ll grow sufficiently to become a global media organization capable of relying entirely on advertising revenue from on-line ads. That’s a bit like trying to out-compete Google. Suffice it to say, at this point in time it doesn’t look as if this experiment is going to work out. The company also offers voluntary subscriptions. You pay a nominal fee and receive in return an advertising-free website.
On the other hand, there are thriving specialist news magazines. Unlike low-quality garden-variety magazines like Newsweek, Time or Reader’s Digest, highbrow international magazines like the Economist go economically from strength to strength. The lesson to me: there is a large number of people who are willing to pay for high-quality investigative journalism and analysis. Of course, the Globe and Mail isn’t the New York Times, and it certainly isn’t of Economist quality analysis. However, Canada needs a thriving national newspaper market. Why? For reasons similar to those I gave for the importance of local newspapers. Without the Globe and Mail and papers like the National Post, who would hold our politicians accountable? Who would be able to finance investigative journalism? Would we really want to depend entirely on what commercial news channels offer to us courtesy of their advertisers? How many investigative stories can W5 realistically put together in a year, compared to what the Globe and Mail continues to produce on a daily basis? We will be a much poorer country for it if those newspapers collapse because we are too cheap to pay for quality news.
What’s probably unimportant is whether a news organisation relies on print or operates entirely on-line. I love holding a newspaper when I read it, but that shows more how much of a romantic Luddite I am when it comes to this medium then the necessity of having print newspapers. I wonder why haven’t on-line newspapers long begun selling their different bits and pieces of news as subscription packages? What would be so bad about being able to subscribe to the Whig’s local content only?
And here ends this week’s sermon: if you are among those who read this column on the newspaper’s website free-of-charge, why don’t you subscribe today and so strengthen our democracy. It’s kind of a civic duty. You might not always agree with what you read, but it is important to have locally employed full-time journalists informing us about what’s going on in our fair city.
Udo Schuklenk holds various newspaper and magazine subscriptions, teaches ethics at Queen’s University and tweets @schuklenk

Sunday, March 16, 2014

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.

Wednesday, March 12, 2014

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


Monday, March 10, 2014

Suicide by depressed people isn't always irrational

I reproduce below my column from last weekend's Kingston Whig-Standard.
We are pretty big these days at setting up mental health programs. Educational institutions, city administrations and non-governmental groups are tripping over one another offering helplines, counseling and awareness activities targeting mental health. These services are mostly aimed, it seems to me, at stopping people from ending their lives prematurely.
Statistics Canada reports that about 60% of people committing suicide in the country suffer from clinical depression. Doesn’t that show that there is a great need for all those mental health initiatives? Well, here’s another fact: anti-depressants ‘fail to result in sustained positive effects for the majority of people who receive them.’ For the majority of patients with clinical depression there exist no satisfactory therapies.
How does it feel to suffer from depression? What does it mean for a depressed person to have depression? Depression doesn’t affect me personally, but very close loved ones have been struggling with it for many years. There was even a suicide attempt that at the time I managed to prevent from succeeding. It’s heartbreaking trying to help a loved one in that state of mind. It’s not about ‘picking yourself up’, ‘getting on with it’ and what-not other phrases I have heard over the years from people unable to understand the devastating impact depression has on people for whom therapies fail. I have seen people try every possible combination of medication on the market, endless psychotherapy and everything else under the sun. Nothing worked. Invariably, hit by an anxiety attack, or unable to sleep for extended periods of time, their psychiatrist was nowhere to be seen and an appointment certainly wasn’t available when it was needed. Perhaps not coincidentally this is true across countries. I have seen similar patterns of service delivery failures in Canada, Germany and Australia.
To give you an idea of what it feels like to suffer from depression, here is a personal account by Deborah E Gray. She describes on her website the impact depression had on her. Check out the many comments left there by other people with depression. Here is a short edited excerpt from her much longer list: “You don’t feel hopeful or happy about anything in your life. You’re crying a lot for no apparent reason, either at nothing, or something that normally would be insignificant. You feel like you’re moving (and thinking) in slow motion. Getting up in the morning requires a lot of effort. Carrying on a normal conversation is a struggle. You can’t seem to express yourself. You’re having trouble making simple decisions. Your friends and family really irritate you. You’re not sure if you still love your spouse/significant other. Smiling feels stiff and awkward. It’s like your smiling muscles are frozen. It seems like there’s a glass wall between you and the rest of the world. You’re forgetful, and it’s very difficult to concentrate on anything. You’re anxious and worried a lot. Everything seems hopeless. You feel like you can’t do anything right. You have recurring thoughts of death and/or suicidal impulses. Suicide seems like a welcome relief. Even on sunny days, it seems cloudy and gray. You feel as though you’re drowning or suffocating. Your senses seem dulled; food tastes bland and uninteresting, music doesn’t seem to affect you, you don’t bother smelling flowers anymore.”
If this is what your life looks like, is it really unreasonable for some people to call it a day and try to end their lives?
Our interventionism should be predicated on preserving lives that are considered worth living by those who have to live them. I have given some thought over the years to our justifications for interfering with decisions by competent depressed people to commit suicide. Many of them simply don’t seem to withstand critical scrutiny. For instance, it is argued by some that we should interfere with suicide attempts by depressed people, because they don’t really mean to commit suicide, it’s their depressed state of mind that is driving them there. The assumption here is that there is some other personal identity hidden in the depressed mind. I doubt that’s true. There is only us at any given point in time, and for the majority of patients for whom anti-depressants do not work that is all there is. Their perception of their reality isn’t clouded by their depression. It is actually quite offensive to tell someone with depression that their reality is different to what it clearly is for them. We can try to justify intervening in such circumstances by slapping the label ‘mental illness’ on them, but really this just begs the relevant questions. It’s not the case that every depressed person who contemplates committing suicide is actually incompetent to make that choice. It’s also not clear why any of this should matter a great deal if the depressed patients’ experienced quality of life is such that they will still not consider their life worth living after our successful rescue attempt. What’s the point of existing if, on balance, you don’t think it’s worth it?
When do people decide to commit suicide? Surely for many this occurs when they consider their lives not worth living any longer and when they don’t see a realistic chance that their lives will improve in such a way that they will be worth living again. If that’s correct, at least for some people with depression suicide is a rational response to their suffering.
Lest I am misunderstood here: My plea is not for an end to our currently fashionable focus on mental health. If anything, we should probably consider ending the stream of those nauseating ‘know a depressed person’ initiatives and pour those resources into front-line services that would permit suicidal depressed people to access high-quality emergency services when they need them. After all, we need only so manyself-help guides for friends of depressed people. Equally though, we should also cease to see every suicide by a depressed person as a disastrous failure of our health care delivery system, or, indeed, as our own disastrous failure. It is only a failure in of clinical research to deliver drugs capable of helping many depressed people in a manner they consider sufficiently acceptable that they do not commit suicide. Perhaps that’s where our money should go.
Udo Schuklenk holds the Ontario Research Chair in Bioethics and Public Policy at Queen’s University, he tweets @schuklenk.

Thoughts on publishing ethics

Here's a piece on publishing ethics I did for Wiley's website on the subject. 

Where should one start a blog entry about publication ethics? It’s such a wide-ranging topic and, given that this isn’t supposed to be a book length entry, I will just pick on a couple of issues that I have seen occur over the years, either in one of the journals that I co-edit or that I have come across during conversations with fellow editors.
ethics word cloudOver the years you begin to delude yourself into thinking that you have seen the full range of ethics infringements.  It’s particularly ironic, I guess, when you edit bioethics journals: you would hope that your authors would be clued in to publication ethics issues.   
We have seen quite a bit of plagiarism over the years. We do subject manuscripts toCrosscheck, both randomly as well as when we have reason to be suspicious of the provenance of some of the content claimed as original by an author. Now, given that we process hundreds of manuscripts each year, what does raise suspicion? Obvious stuff really: if an author whose first language isn’t English submits a manuscript that suffers fairly consistently from low quality English language expression, and suddenly there are a few pages of impeccable English, you would probably wonder how those impeccable bits came about. Sometimes there are perfectly innocent explanations, such as authors having had a friend copy-edit parts of their manuscript, but not all of it. On other occasions you discover that some material has indeed been plagiarized.  
You might also come across content that looks a little bit too familiar. Journal editors probably pick up on plagiarism for no other reason than that they send submitted papers out for review by true subject experts. More often than not they give you a heads-up on possibly plagiarized content. Funnily enough, this is how I came across a plagiarized paper for the first time in my academic life. The former editors of the journal that I now edit asked me to review a manuscript on a topic that I had just published a paper on. True enough, the paper they asked me to review was identical (to the title of the article) to my previously published piece. Go figure.
I don’t think, courtesy of legal restraints, we do a good job these days of dealing with obvious cases of plagiarism. We do a good job flagging a duplicate publication, as that is fairly easy to show. Plagiarism is becoming an endangered category. The reason, probably, is that to call something plagiarized content you’d need to prove intent if an accused author ever decided to sue you for libel. So, it seems to me that these days most instances of plagiarism are labeled as incidents of duplicate publication. The thing is, duplicate publication didn’t historically refer to duplicating other people’s content and pretending that it’s your own, but to duplicating your own content. The former would have been called plagiarism. The latter would have been called duplicate publication. Today both cases are most often referred to as duplicate publication due to fear of litigation.
Let me give you two examples, both from journals that I edit. We had large parts of an article we had published plagiarized in a medical journal. The author of the plagiarized content also happened to be a senior editorial board member of the medical journal that published said piece, and a senior bioethicist in the region. The medical journal’s editor investigated the matter and decided to publish an erratum regretting the inadvertent duplicate publication. And that was that. No professional sanction occurred, everyone happily pretended that the blatant verbatim copying of large parts of our original content was inadvertent. Nonsense. In addition, some academic institutions have been known to ignore information showing that their faculty were caught plagiarizing other people’s work.
The other example happened just a week or two ago. Academics submitted a paper to us that we accepted after peer review. They duly signed the standard disclosure form in which they assured us in writing that their content was original, and that it hadn’t been submitted or published elsewhere. We received a tip-off that the empirical component of the article we accepted (including a number of tables) had actually already been published in a local medical journal – and that indeed turned out to be the case. We emailed the authors of said document to ‘please explain’ and have yet to receive so much as an acknowledgment of receipt of our message. Either way, we caught this one. In many documents this kind of duplicate publication would be referred to as self-plagiarism. That’s a misnomer. You can’t plagiarize your own content; plagiarism by definition involves the theft of someone else’s intellectual property and it involves the thief pretending that it is his or her own. Clearly you cannot steal your own intellectual content, hence there is no such a thing as self-plagiarism.
I have great difficulty understanding why anyone would even try to publish plagiarized content. In this day and age, whole computer programs trawl academic publications non-stop, searching automatically for plagiarized content. Incidentally, one of the cases mentioned above came to my attention via this route. Why anyone would wish to subject themselves to the risk of getting caught is truly beyond me. Perhaps academics engaging in misconduct are banking on a lack ofenforceable regulations. Unless their employer punishes their misconduct, the worst that can happen to them is that a particular journal bans them from submitting (for a while). Perhaps publishers and groups such as COPE (the Committee on Publication Ethics) should come together and discuss whether more significant punitive measures could deter more authors from engaging in forms of academic misconduct.
The website Retraction Watch keeps track of many academic journal retractions. Check it out when you have a minute.  And COPE has developed a number of really useful flowcharts on what we as Editors should do if we come across cases of suspected plagiarism or duplicate publication. I recommend them to your attention. You might find them helpful whether you are an author or a journal editor.

Wednesday, March 05, 2014

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





[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