Today, a friend sent me a news article by a colleague, Dr Prabhat Jha, who explains the link between behaviour in Canada and his research on the use and abuse of selective abortion in India. This presented the ideal opportunity to reproduce here a paper I wrote recently about the implications of Dr Jha’s landmark finding that there are millions of “missing” girls in India, due to selective abortion.  Please note that a more scholarly version of the text below has been submitted to a peer-reviewed journal.  Therefore please do not excerpt or cut-and-paste any part of this blog post.  However, linking to the post is fine.  Thanks.

Implications of India’s Skewed Sex Ratio

by Dr Raywat Deonandan

Dec, 2011

In their widely cited 2011 paper, Dr Prabhat Jha and colleagues used publicly available demographic data (the national census and household health survey data) to show that there were likely 4.2-12.1 million selectively aborted girls in India from 1980 to 2010.  The authors convincingly suggested that selective abortion was the primary explanation for a steadily declining female-to-male sex ratio in India, which in turn is driven by cultural factors associated with a preference for boy children.

Their paper was not the first to point to a crisis in India’s sex ratio.  In 2001, the UN estimated that there were 44 million “missing women” in India.  And in 2008, researchers examined hospital delivery data over 110 years to show that India’s national sex ratio fell dramatically after 1980, when ultrasound technology for antenatal sex determination became available.  Many regional studies confirm that this trend is truly national.

Similar trends have been famously seen in other countries, especially in China, where the “one child policy” is thought to have resulted firstly in an epidemic of female infanticide, and secondly, after the arrival of antenatal sex determination technologies, in an increase in selective abortions of female foetuses.

Beyond the moral objections to female foeticide is the demographic crisis represented by a severely unequal sex ratio.  However, the likely impacts of such imbalance are not well known, nor have they been well considered in the wider health literature.   They include:

• Speculatively, a rise in levels of violence amongst unmarried men of reproductive age, as competition for brides increases, although violence always has multifactorial causes.  This is because, in affected societies, marriage and paternity are linked to social prestige among men.

• A shortage of marriageable women may lead to a disavowing of lower class or less socially desirable men, causing social strife stratified to the less economically robust classes.

• An expansion of the sex industry, probably involving coercion and trafficking and possibly contributing to higher rates of sexually transmitted infections.

• An increase in inter-generational relationships, most egregiously manifesting as child marriage.  In India, child marriage (usually involving young girls and much older men) is already such a serious problem that it has attracted the attention of the Clinton Global Initiative and other global NGOs.  Child brides are at greater risk for a host of additional unwelcome experiences, such as reduced educational opportunities, increased economic dependency and greater rates of maternal complication and mortality.

• Parts of India already have a classical history of polyandrous marriage.  While polygyny has been popular in many societies historically, polyandry seems to arise more sporadically and in times of resource crisis or bride shortage.  Recent trends in Indian fraternal polyandry have arisen from a desire to keep ancestral lands from being divided by marriage.  But it is conceivable that such an arrangement might become more commonplace if the sex ratio continues to skew.

• Two possible positive outcomes include a greater tolerance of homosexual relationships and a greater acceptance of cross-class and cross-caste marriages.  However, the latter would likely involve unions between powerful men and vulnerable women, which may only serve to exacerbate existing gender tensions and exploitative relationships.

In India, the social drivers for sex selection are both deeply cultural and shallowly economic.  Amongst orthodox Hindus, the care for elderly parents is traditionally the domain of the eldest son and his wife.  Thus, the economic disincentive for having a girl is reflected in the local saying that raising a daughter is akin to “watering someone else’s garden”.  A preference for sons manifests in many agrarian societies in which a male work force is valued for their wage-earning capacity.  And the tradition of dowry, originally intended as a vehicle for assuring that a new bride had personal wealth, often in the form of jewellery, in the event that she was widowed or abandoned, has mutated into a form a “bride price”, in which families often go into debt to marry off their daughters.   These are all economic disincentives for having girl children.

Interestingly, Dr Jha found evidence that sex selection is most prominent amongst affluent households for whom the economic disincentives are less relevant.  For them, it seems likely that a simple and sexist preference for sons is at play, which has at its heart a cultural bias for the social cache and prestige that sons provide.  The prime distinction between the affluent and the poor in this sense, then, is that the former can more readily afford expensive sex selection technologies.  Importantly, the clustering of the trend in wealthier households also means that India’s vaunted economic expansion, especially in the middle class, is unlikely to assuage the sex ratio situation; indeed, as more families enter the realm of the affluent, it may exacerbate it.

With drivers and incentives for sex selection being social, cultural and economic, policies for addressing the crisis cannot be limited to the medical realm.  In Jha’s paper, it is noted that India’s Pre-Natal Diagnostic Techniques Act of 1996, which seeks to penalize the misuse of prenatal sex determination technologies, is largely unenforced.  The authors suggest that India’s traditional inability or unwillingness to police private medical practice is the greatest hindrance.  The paper’s accompanying commentary recommended better enforcement of existing policies as the appropriate solution.  But it is possible that the desire to penalize sex selection, while evident at the policy-making level, has yet to penetrate to the street level, due to the depth and pervasiveness of cultural and economic drivers.

In the words of one researcher, “It is evident that mere legislation… cannot solve this social evil. Moves to address all forms of gender inequality… are needed to strike at the causes for distortion of the sex ratio.”  Social change for improving women’s rights, both in India and elsewhere, is required.  As noted by another writer, “Nothing can realistically be done in the short term to reduce the current excess of young males, but much can be done to reduce sex selection now”.  While official policies have their place, in India no progress will be made unless the social and economic drivers are addressed.  For the former, this means public awareness and educational campaigns focusing on the value of girls.  And for the latter, it means finding creative solutions to expand employment opportunities for both sexes, and to remake the social welfare infrastructure to limit the expectation of gender-based elder care, inasmuch as such is determined by an expectation of the roles of the eldest son and his wife.

Given the status of India and China as both the world’s fastest growing economies and our most populous lands, the demographic situation faced by both countries is relevant to all of us.  To refer to those nations’ skewed sex ratio as a mere crisis is an understatement.  Such profound demographic change may prove to be the basis for a host of pervasive social, economic and medical woes manifesting as the present generation of newborns reaches reproductive age.

Comments are welcome.

This will likely surprise you, but did you know that infertility is considered to be at epidemic levels worldwide?  This is clearly at odds with our conception of the world as being overpopulated.  But, primarily in wealthier, developed nations, the provision of medical reproductive services to people deemed infertile is now a billion dollar global industry, spurred on both by advances in technology and the emergence of a globalized economy. Unsurprisingly, India is one of the world’s most popular providers of reproductive services, leveraging her medical depth, advantageous currency exchange, and her pervasive poverty.  But when human reproduction meets commerce, gender inequality and wealth disparity, the potential for ethical transgression becomes great indeed.

Someone is considered infertile if he or she has been having unprotected (heterosexual) sex for one year, with an intent to reproduce, without achieving pregnancy.  Conservative estimates hold that at least one billion women worldwide (and an unknown number of men) are presently experiencing a degree of infertility.  This estimate is stunted by the obvious fact that you don’t know if you’re infertile unless you’re actually trying to get pregnant.  The actual number is therefore likely to be substantially higher. The experiences of assisted reproduction clinics suggest that a fair proportion –if not a majority– of infertility issues are actually so-called “male factor” issues, meaning that the problem is often related to sperm quality.  Indeed, semen samples collected over the past seven decades suggest a global, dramatic reduction in semen quality, such that what is considered normal today might not even make the scale 70 years ago. This may be a universal, global human trend, or it may be relegated to the developed world.  We just don’t know yet.

Many theories have arisen for the increase in infertility in both sexes.  Undeniably, women in high income countries are waiting into their 30s and 40s to start their families, and this is dramatically reducing their ability to become pregnant.  The rise of obesity, and with it diabetes, has certainly contributed.  It is possible that soy products, mimicking human hormones, are affecting our reproductive cycles.  Some have theorized that overuse of the female contraceptive pill has made our drinking water more hormonal, or that some artificial compounds, such as plastics, may decay into substances that also mimic hormones.  At this point, all of this is mere speculation.  What is known is that the seeking of assisted reproductive techologies (ARTs) is at an all time high, and shows all the signs of accelerating.

The services sought include in vitro fertilization (IVF) –the classic “test tube baby”– a technology, that has been with us for over 30 years now; fertility drugs; sperm and egg donation; and maternal surrogacy.  The latter is characterized by a woman hiring out her womb to gestate an embryo on behalf of a client.

With the increase in demand, and with the maturation of reproductive technologies and services has come a global industry of cross-border reproductive service provision, rife with philosophical quandaries, legal pitfalls and ethical concerns.  Presently, in terms of financial transactions, the United States is the world’s greatest provider of reproductive services.  But hot on its tail is India, which is fast becoming the undisputed world champion of all manner of ARTs.  This phenomenon is most commonly called reproductive tourism, and is being monitored by ethicists and epidemiologists, myself among them, for its challenges to our ideas about the valuation of human biology.  This is particularly true for maternal surrogacy, since it necessarily involves the biological cooperation of another human being unconnected to the infertile couple.

The power of the industry in India is based upon several factors.  They include: (1) the overabundance of English-speaking, highly trained doctors, as every Indian family strives to have at least one doctor in their midst.  (2) The existing, well developed and recognized medical tourism infrastructure, which includes integrated travel, hotel and insurance services.  (3) An advantageous currency exchange rate leading to a reduction in prices, often by a factor of 10 or more.  (4) A complicit Indian government; and (5) perceptions of Indian women.

The last two are particularly interesting.  The Indian government has actively been promoting its medical tourism services for some time now, for example by sponsoring junkets around the world.  The extent to which the state is complicit in encouraging the growth of reproductive services specifically is a bit more difficult to measure, but may include the nature of India’s adoption laws with respect to surrogates.  A surrogate mother in India loses all rights to a child that is not genetically hers at the point of delivery.  Whereas, in other countries, a surrogate tends to have some time after delivery to decide whether she wishes to state a claim on the child.  It is unclear to what extent the law in India is shaped by the needs of industry, and to what extent it truly reflects the values of Indians.

The perception of Indian women is a subtle and largely immeasurable point.  Poor, village-based Indian women are often perceived in some circles as being ideal surrogates due to their global image as demure and submissive.  Indian women are peceived to be less likely to drink alcohol, to smoke, and to engage in other practices seen to be detrimental to a successful pregnancy.  In other words, it is their powerlessness relative to men and to the structures of their society that make them attractive to this trade.  Hence, maternal surrogacy is where India’s dominance in the world ART market truly manifests, given her abundance of young, poor women.

And therein begins the discussion of the ethics of the international reproductive tourism industry.  When clients from a wealthy country, like the USA, Canada or the UK, seek biological services from vulnerable –and likely uneducated– individuals in a poor country, like India, the opportunity for exploitation, even unintentional, is great.  A maternal surrogate in India is handsomely paid, receiving anything from $2000 to $6000 per pregnancy, which is considerably more than she is typically likely to see in a year.  A strictly libertarian argument holds that “fair” monetary compensation, combined with freedom of choice, obviates any ethical concern.  A more nuanced perspective asks, if the alternative is poverty and death, is there really a choice at all?  This is the classic tension between autonomy and exploitation, in that a desperately poor person can be co-opted to express her autonomy in such a way that it leads to her exploitation.  There are identical scenarios involving international organ tourism, in which th extreme poor are convinced to sell their organs, and in many forms of prostitution.  The fundamental question becomes, is it ethical to seek a profoundly intimate (and sometimes self-damaging) service from a vulnerable stranger, knowing that she likely offers it from a position of desperation?

My work as an epidemiologist and ethicist has been to explore and describe the phenomenon of maternal surrogacy in India, without passing judgement on the service providers, clients or surrogates. I have managed to identify 21 distinct ethical pitfalls inherent in the extant industry.  But I wish to bring readers’ attention to just two of them: insufficient medical advocacy and limited informed consent.

The present commercial model for maternal surrogacy in almost every clinic in the developing world holds that a contractual relationship is forged between the client (usually a woman or couple from a wealthy country), the clinic and the surrogate.  But from a medical perspective, the clinician is directly responsible for the care of both the client and the surrogate, though is being paid by just the client.  This is clearly a conflict of interest.  Consider if a medical situation were to arise in which the clinician must act either to save the life of the fetus or the surrogate.  He has a strong financial incentive to choose on behalf of the the paying client, and thus the fetus. The absence of an independent medical advocate acting on behalf of the surrogate immediately nudges this relationship into the realm of exploitation.

Given that the surrogate is often quite poor, uneducated and semi-literate, it seems unlikely that she is even aware of the dangerous nature of her unequal status in this commercial relationship. This vulnerability further complicates the proper receipt of true informed consent.  In legal terms, informed consent is a process to avoid fraud and the imposition of one party’s will upon another.  In medical ethics, it is the process of a clinician receiving genuine permission from an autonomous person to perform a medical procedure on that person.

Contrary to its portrayal in popular media, informed consent is not simply the receipt of permission.  In TV shows like “House”, informed consent is co-opted from patients who are tricked into giving permission for a dangerous procedure. It is often rationalized away because “the doctor knows best”. True informed consent involves an ascertainment that the patient understands the nature of the procedure and the likelihood of all its known risks.  Illiteracy is but one barrier preventing the communication of such risk.  But when risk is presented in the same package as a significant financial incentive for accepting that risk, the negative consequences are necessarily muted in comparison.

But what are these risks?  Childbirth is, after all, a natural process that pretty much all of these women have already gone through, since proven gestational ability is usually a prerequisite for serving as a surrogate.  However, there is a reason that maternal mortality rates are monitored in every country: pregnancy is an innately dangerous state for a woman, especially in a developing world context.  Surrogates risk metabolic and cirulatory complications, such as diabetes or extreme hypertension.  Death is a small but real risk, as is, through gestational injury, impairment of her ability to have future children.

Those are the known, medical risks that any obstetric specialist knows to communicate to a woman considering pregnancy.  In the case of maternal surrogacy in India, there are social risks that are just as dangerous as the biological ones.  Domestic violence and household strife have been known to arise when a surrogate’s husband dislikes the fact that she is carrying “the child of another man”.  There is one story of a surrogate being forced from her village after her neighbours learned she was carrying the baby of two gay Israeli men.  There is also uncertainty surrounding whether the surrogate will be able to control her diet, or enjoy continuing carnal relations with her husband, or whether her current childcare responsibilities will be interrupted.  These are all downstream negative consequences of the surrogacy procedure that need to be considered when formalizing the contractual relationship, though there is no evidence that these considerations are formally included in existing surrogacy negotiations.

Further complicating the quest for informed consent is the unavoidable power imbalance between doctor, client and surrogate. As the least powerful member of this triad, the surrogate is at risk for being cowed into compliance.  The fear is that unless conscious and overt steps are taken to ensure her full expression of choice and autonomy, a poor, semi-literate village woman will typically accept at face value the estimation of risk presented by a wealthy, educated and typically male doctor.  It takes unusual strrength to find the voice to question points in a formal contract if presented as a fait accompli by an officious clinician. It is in some ways the legacy of India’s colonial heritage, wherein informed consent can literally be coerced by identity; an English-speaking clinician in Western garb weilds extraordinary cultural authority.

A brochure of one Indian ART clinic featured the following quotation from a surrogate who had recently produced a child for an American client: “It’s a miracle.  I myself was wondering how I managed to deliver such a beautiful American, totally white baby.  I couldn’t believe it –I am very happy.”  The statement is presented as a marketing tool for potential foreign clients.  But what should be evident is that this woman failed to understand the genetic realities of the procedure in which she was a central part.  In other words, truly informed consent was not in play.

There is no doubt that maternal surrogacy presents a ripe opportunity for very poor women to make a dramatic improvements in their families’ lives.  So long as infertility remains prevalent globally, and so long as India experiences the tandem of advantageous global prices and widespread poverty, it is assured that India’s reproductive tourism industry will continue to grow.  Our goal, as responsible global consumers seeking to minimize suffering and exploitation, should be to make the process as fair and as safe as possible.  Ultimately, the creation of life is meaningless unless we also strive to respect the living.

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Dr Raywat Deonandan is an Assistant Professor in the Interdisciplinary School of Health Sciences at the University of Ottawa, the former Chief Science Advisor to Assisted Human Reproduction Canada, and an expert on the global industry of reproductive medical tourism. Links to this post are welcome, but please do not excerpt elements or text without informing the author.  Thank you.

Greetings from onboard a Westjet flight from Ottawa to Vancouver.  Award for funniest line of the morning goes to the Westjet flight attendant who announced, while in mid-air: “Smoking is strictly prohibited on this flight. Anyone caught smoking will be asked to leave the aircraft immediately.”  Okay, so things seem funnier in the air.

The big news in global health and development today is that the UN is due on Monday to annouce that the human population has reached 7 billion people.  The United Nations Population Fund (UNFPA) will publish its insights on this matter in “State of the World Population, 2011.”

Seven billion is nothing to sneeze at.  That’s a lot of people.  In fact, it seems likely that the world will see 15 billion people by the year 2100.  Most likely, the 7 billionth child will be born in India or China.  It’s worth pointing out that, despite those nations’ remarkable economic growth over the past two decades, they still suffer from crippling poverty, due in part to a uneven distribution of wealth and opportunity.  In fact, half of all undernourished children in the world live in South Asia.

When we consider population pressures, two thoughts immediately come to mind: starvation and ecological degradation.  The two items are inextricably linked, of course.  With more people comes increased use of environmental assets, increased pollution and increased weight put upon regional ecosystems.  This also means a decreased ability to potentiate food production, given the increased tendency for people to live upon and build upon arable land.  The irony is that with more people, there are more mouths to feed, and thus a greater need for food production.

In a global health context, when we talk about food security, we usually define it as a construct with two dimensions: availability and accessibility.  The former relates to our ability to produce food, while the latter to social, political and geographical barriers that limit proper food distribution.  Most experts will tell you that accessibility is the true limitation to feeding the world.  In most countries, there is sufficient food for everyone, but due to a variety of factors large numbers of hungry people do not have access to sufficient calories.  Perhaps the most famous person putting forward this view is Nobel prize-winning economist Amartya Sen.

While I agree that accessibility is indeed the dimension of food security we must address first, I think it’s becoming preponderantly more important to consider aspects of food production.  This is because it is inextricably linked to the environment; and given the accelerating negative impact of Climate Change on the most populated parts of the world, I fear that food production will be at a crisis level in a couple of decades, if not sooner.

The reason for this is multifold, but I will list but three points:

1. -One of the great crises in the world is the declining availability of fresh water.  This has a most immediate effect on the growth of agriculture.  Climate Change, pollution and population growth have combined to drastically reduce the world’s groundwater reserves, to render many existing freshwater sources untenable, and to change rain patterns such that previously reliable agricultural zones are becoming less so.
2. -In the past century, human beings have begun doing something really foolish: building on arable land.  In previous centuries, we have lived on rock and barren land, and have reserved arable land for farming.  But due to some strange economics, it has become more lucrative to sell farmland to a strip mall developer than to continue to grow crops on it.
3. -Point #2 seems in conflict with the inexorable truth that the world is increasingly urban.  People the world over are fleeing the countryside to live in squalor in cities, again due to the strangeness of our economic systems.  But an important aspect of this observation is that, while some rural land is being abandoned, other rural land is being absorbed by growing cities to become suburbs and exurbs.

A final thought on this matter is to point out the conflict between our concern over a crisis of potential overpopulation and the demands of our growth-driven economics.   On the one hand, seven billion people represents a strain on our resources and on our ability to manage the planet.  On the other hand, we have created a civilization in which wealth is defined by the sum total of economic activities of its citizenry, meaning that more people often means more sustained wealth.  The Western world bemoans its current demograph trap, wherein the fabled Demographic Transition has created so much personal security and longevity that fertility rates have dropped beneath replacement rates.  There is concern in Canada, Japan and much of Europe that the smaller sizes of upcoming generations are insufficient to pay for the demands of our complex and expensive society.

The obvious solution is two-fold: allow the freer movement of people across borders and seek to recompute how we define wealth.  But both of these require a profound shift in both political will and social vision.  Then again, given that the crisis of Climate Change requires a similar shift, maybe the world is ripe for such a change.

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Today’s Preamble

First off, please visit the Canadian Grand Challenges website and vote for the project proposed by my friend and colleague Dr Ophira Ginsburg.  Go.  Now!

Second, there’s a new article over at Skiffy.ca, this time a review of the TV show Sanctuary.

Third, I would like to express my gratitude to my former student Jill, who nominated Deonandia for a “media excellence” award from the University of Ottawa President’s office.  We didn’t win.  And though I’m not receiving formal recognition by the University at a reception tomorrow night, I will be attending, and have at least been acknowledged by the jury.  Details are here.  Here’s the text of the email from President Allan Rock:

Dear Professor Deonandan,

Please accept my congratulations on being recognized for a special mention by the jury in the recent 2011 Excellence in Media Relations Award. We received many nominations this year and although your accomplishments were very impressive, committee members ultimately selected professors Pascale Fournier and Norman O’Reilly.

Your research and writing in the areas of epidemiology and global health are helping to facilitate a better understanding of how these issues impact on the world’s population. Your unique talent in integrating literature, art, ethics, law and social policy into the study of global disease burden has had a powerful impact on the field. Thank you for sharing your insight with the media, which helped to inform and educate the broader community, and will no doubt continue to raise awareness and eloquently advocate for change in the realm of global health.

Congratulations once again on this well-deserved recognition. It is because of exceptional scholars and researchers such as you that the University of Ottawa is highly regarded among Canadian universities.

Sincerely,

Allan Rock

The concerning part is, of course, that now this blog is on the radar of people who employ me.  Given some questionable past content, this might not be such a great thing.  On the other hand, why stop now?  I do, however, feel the need to write more about epidemiology.  So now we move on to today’s real topic…

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Are Supplements Good For You?

If you’re on Facebook (and, really, who isn’t these days?) someone has probably sent you a link to this article: “No evidence for benefits of most vitamin supplements.”  The article summarizes a study by the University of Minnesota, where researchers surveyed 39000 women about their use of multivitamins, vitamins A, C, D and E as well as beta-carotene, B vitamins and minerals such as calcium, copper, magnesium, selenium and zinc.  It’s unclear how health outcomes were assessed, since the original study is not well described by the journalist.  But I assume health status was assessed via the questionnaire.

The article suggests that the findings of the study fail to show a link between supplement use and the avoidance of death from ailments that are meant to be treated by those very supplements.  Many in the media (and by media, I include Facebook) are citing this study –or more precisely, this article about the study– as evidence that the supplement industry is not only without benefit, but possibly deliberately duplicitous, as well.

Now, I don’t know what the intentions of supplement manufacturers is.  And I don’t really know if supplementation is good or bad for you.  All I really know is epidemiology: in other words, how to assess whether a study is really able to conclude the things that it concludes.

So let’s break it down.  First, I have not read the original study.  I, like everyone who is citing this report, have only read the news article.  So any misrepresentations I may make of the study are due to the linked media article having reported such misrepresentations.

As already noted, it is unclear how health outcomes were assessed in this study.  If indeed it was via questionnaires, then how could death rate have been ascertained?  Dead people don’t do surveys.   Additionally, if other health states were also assessed via survey, then something called “recall bias” is at play.  For example, if some asked you, “how many head colds have you had in the past 12 months?”, could you recall enough of your suffering to answer accurately?  And yet that is typically how a lot of this kind of research is done.

What’s more likely is that the Iowa Women’s Health Study, which is what this study was a part of, ascertained real health outcomes from direct observation of patients, and measured associations with those real outcomes with self-reported supplement usage that was ascertained via questionnaire.  In that case, death rates could have truly been measured, and the recall bias would have been in the ways subjects remembered their supplement usage.

The article presents no information about the selection criteria for subjects entering the study.  For all we know, only women with serious underlying health issues were enrolled.  In such a case, higher rates of mortality and morbidity, relative to the general population, would be expected.  Additionally, women who are ill may be more likely to seek supplementation.  Thus, their underlying health states constitute what we call a “confounder”, which is a factor that affects both the exposure (tendency to seek supplements) and the coutome (mortality and morbidity rates).  The existence of a confounder –unless it is controlled either methodologically or statistically– renders all conclusions of a study moot.

Again, I am not saying that confounding was in play, only that the study, as described by the news piece, does not discount its possibility.

Lastly, the article makes it a point to insist that supplementation does not decrease death rates for deaths caused by ailments that are supposed to be addressed by supplements.  But death is a fairly extreme outcome.  Most people don’t take vitamins to epxlicitly avoid death, but rather to avoid illness.  A study that fails to detect an association with supplementation and reduced death rate, is also likely to be insufficiently sensitive to detect an association between supplementation and reduced illness rate.

So what to conclude from all this?  Well, first that the National Post sucks at describing scientific studies.  Second, that the results of the cited study, as described by the National Post, do not necessarily suggest that supplementation is useless, but merely that in the case of women who may or may not have serious predisposing conditions, supplementation with these selected nutrients does not prevent death.

History was made today when the Nobel committee announced that Canadian Ralph Steinman will receive the Nobel prize for Medicine…. even though he died on Friday.  The committee did not know that he had died, and of course Dr  Steinman did not know that he was about to win.  The moment is historic because many times in the past, the Nobel committee has refused to offer posthumous awards.  This has simplified their task considerably, and has also made their role even more controversial.

But in this case, no one is going to argue that it was the right thing to do.  If you need a loophole to allow it, then one can consider that the decision to award him was made while Dr Steinman was still alive.  Maybe that should be the new standard.

On another medical note, I want to draw attention to the story of Dr. Rodney Willoughby, Jr, pioneer of what is today called the Milwaukee Protocol, which is the world’s first system for treating rabies without a vaccination.

Dr Rodney Willoughby, Jr

Rabies has been one of mankind’s worst scourges for centuries, if not millennia.  Until the development of the rabies vaccine in 1885 by Louis Pasteur,   to be bitten by a rabid animal was a death sentence.  Pasteur’s formulation, and its successors, have since become, not only a prophylaxis, but also a treatment, which is effective for a brief period after first exposure.

In 2004, a 15 year old American girl names Jeanna Giese went to the hospital complaining of some neurological symptoms, more than a month after having been bitten by a bat.  Jeanna’s condition declined rapidly and her status as rabies positive was confirmed, leading to her physicians to declare that she would be dead in days, if not hours.

She fell into the care of Dr Rodney Willoughby of the Children’s Hospital of Milwaukee.  Frantic for any kind of treatment, Willoughby found what the media typically describes as “an obscure paper on the internet.”  The paper essentially suggested that rabies victims die of brain failure before their natural immune systems have sufficient time to destroy the virus.  So Willoughby made the innovative conceptual leap to try to protect Jeanna’s brain while her body did the hard work.

His solution was to put her into a coma and hope that that would protect her brain.  It was a low probability shot, and Jeanna’s parents are commended for having decided that, even if Jeanna died, what will have been learned from the attempt might enable the new protocol to be refined for the next victim.  Ten days into the coma, Jeanna opened her eyes.  She was cured.

“Cure” is a problematic word.  The virus had “rewired” her brain.  She had to re-learn how to walk and speak.  Even today her speech is slowed, and she has blocks of missing memory.  But she is alive and functioning.  In fact, earlier this year, Jeanna Giese, the first known survivor of a full-out rabies infection graduated from college.

Willoughby’s treatment regimen has since been named the Milwaukee Protocol.  It has been refined since Jeanna’s historic recovery, and has been used to save the lives of five other individuals.  It is important to note that most people, even those indertaking the new protocol, do not survive.

I want to draw attention to an often overlooked aspect of this story.  It is true that after many centuries of effort, only now has someone managed to cheat rabies.  One of the reasons for this is…. information.  Specifically, the internet.  Willoughby had mere hours to figure out a viable regimen.  His ability to access all knowledge on the topic of rabies, at lightning speeds and at the touch of his fingers, allowed him to find the one study that gave him the idea of inducing a coma.

So first, someone had to have had the wherewithal to write down his theories about rabies, brain health and the immune system.  Second, someone else had to have had the good sense to publish those theories.  And lastly, the information revolution called the Internet put that paper at the fingertips of Dr Willoughby, and medical science was revolutionized.

The free flow of information, the sharing of scientific knowledge and opinion, saved Jeanna Giese’s life, and may have finally conquered one of humanity’s oldest foes.

(A modified version of the following has been submitted to an unnamed journal for publication.  Republication or redistribution without the permission of the author is forbidden.  However, links and references may be made to this specific post.)

In May of 2011, after a decade-long international manhunt, Osama bin Laden was shot dead by US special forces in Abbottabad, Pakistan (1).  It was later reported that bin Laden’s presence, or at least that of his family members, was likely confirmed via the comparison of DNA samples from bin Laden’s dead sister to samples taken from individuals –predominantly children– in the Abbottabad neighbourhood.  The samples were obtained through the inception of a childhood Hepatitis-B immunization program that was devised and implemented by US Intelligence for the sole purpose of locating Osama bin Laden (2).  To appear as authentic as possible, the sham vaccination campaign even started in the poorer part of town, before making its way to the wealthier bin Laden neighbourhood (3).

While acknowledging that the Hepatitis-B campaign was implemented for reasons unrelated to public health, the CIA nonetheless insists that the actual injections were real and can therefore be considered a genuine and valid public health intervention (4).  While the so-called “bin Laden vaccine” might have been a real formulation, reports suggest that the duplicitous nature of its delivery did not allow for provision of the follow-up dosages required for proper conferral of immunization against Hep-B (5).  This means that the inoculated children do not in fact have full immunity, and that their health has therefore been compromised in the wake of this covert military operation.  Future related cases of morbidity and mortality are unlikely to appear on anyone’s ledger of collateral damage caused by the Abbottabad raid.

Concern has been voiced in the international public health community about the damage that this operation has done to the image and effectiveness of genuine current and future public health campaigns.  The concerns can be summarized into two themes: fear of greater distrust of public health campaigns, leading to reduced treatment compliance and vaccination coverage, and fear of backlash, perhaps violent, against individual health care workers.

Public health campaigns, particularly vaccination programs, already suffer from public distrust.  This is particularly true in Pakistan, where a 2007 polio vaccination program famously failed to immunize 160,000 children due to rumours that the campaign was “a conspiracy of the Jews and Christians to stunt the population growth of Muslims” (6) or an “American conspiracy” to cause widespread sexual impotence (7).  Similar stories arise from other parts of the developing world, such as Nigeria, where accusations of a population control agenda were also laid against the polio vaccine (8).  In such areas, the success of an immunization campaign depends strongly on the cooperation of local religious and community leaders. With public admission now that at least one such campaign was in fact a CIA operation, the chances of such future cooperation in that region –and others– are greatly reduced. In wealthier countries, of course, the anti-vaccination movement is similarly driven by conspiratorial sentiments, usually with pharmaceutical companies, rather than government agencies, typically painted as the villains.

Unsurprisingly, with distrust of the vaccination campaigns has come distrust of the workers.  The 2007 anti-vaccination scare in Pakistan involved cases of violence against the clinicians tasked with giving the inoculations (9).  Violence against health care workers is a growing issue worldwide, as in the attacks on caregivers during the political demonstrations in Bahrain earlier this year (10).  By undermining the legitimacy of health development programs, the Abbottabad raid has possibly increased the likelihood of violence against public health caregivers abroad.

American international health and development efforts have long been accused of being fronts for American political, intelligence or military purposes.  According to William Blum, a few decades ago USAID (the United States Agency for International Development) maintained “a close working relationship with the CIA, and Agency officers often operated abroad under USAID cover” (11).  And well before the Abbottabad raid, the media reported on Pakistan’s suspicion that USAID efforts in that country were thin cover for CIA activities (12).  Health care and development workers engaging in what they assume to be altruistic foreign endeavours are often unknowingly tainted and burdened by the weight of a history of official duplicity.

Steps must be taken immediately to assuage the damage to public health that the Abbottabad raid and similar operations have wrought upon workers’ ability to protect both themselves and the populations in need.  While most international health workers have become experienced in helping to diffuse anti-vaccination propaganda, now is the time for more official and systematic steps to be taken.  There are rumours that WHO and UNICEF are devising special identification procedures for vaccination workers, to make it harder for them to be infiltrated by intelligence agents (9).  While this is unlikely to deter infiltrations that have official state sanction, it is at least a first step in restoring public confidence.

What is truly needed is for key agencies — e.g.,WHO, UNICEF, USAID, CIDA—to issue individual and joint public statements, first to condemn the use of public health as cover for an act of military violence, and second to make assurances that despite whatever activities might have been permitted in the past, in future all public health activities and interventions will be free from any type of political or intelligence-related duplicity.

In fact, this shameful affair presents a unique opportunity for Canada in particular to adopt a leadership role in the return of honour to international public health.  A declaration in Parliament, followed by a renewed formal statement in policy, that no Canada-funded public health endeavour will be provided under false pretences, would be a bold and needed declaration to the world that Canadians take the health of populations seriously, and that our projects and our workers are to be trusted.

REFERENCES

1. BBC.  Osama Bin Laden, al-Qaeda leader, dead – Barack Obama. BBC News, May 2, 2011.  Available at: http://www.bbc.co.uk/news/world-us-canada-13256676.  (Accessed Aug 30, 2011).
2. Shah S.  CIA organized fake vaccination drive to get Osama bin Laden’s family DNA.  The Guardian, July 11, 2011.  Available at:  http://www.guardian.co.uk/world/2011/jul/11/cia-fake-vaccinations-osama-bin-ladens-dna. (Accessed Aug 30, 2011).
3. Shen S.  (July 28, 2011).  CIA Vaccination Program to Catch Bin Laden Makes Middle-East Even More Suspicious of Vaccinations.  Foreign Policy in Focus, July 28, 2011.  Available at:   http://www.fpif.org/blog/cia_vaccination_program_to_catch_bin_laden_makes_middle-east_even_more_suspicious_of_vaccinations.  (Accessed Aug 30, 2011).
4. Ukman J.  CIA defends running vaccine program to find bin Laden.  The Washington Post, July 13, 2011.  Available at: http://www.washingtonpost.com/world/national-security/cia-defends-running-vaccine-program-to-find-bin-laden/2011/07/13/gIQAbLcFDI_story.html.  (Accessed Aug 30, 2011).
5. Chambers A.  (July 13, 2011).  Was Bin Laden vaccine plot worth all the risk?  The Guardian, July 13, 2011.  Available at:  http://www.guardian.co.uk/commentisfree/2011/jul/13/bin-laden-vaccine-plot-cia.  (Accessed Aug 31, 2011).
6. Albon C.  The hidden perils of covert action.  Foreign Policy, July 13, 2011.  Available at:  http://afpak.foreignpolicy.com/posts/2011/07/13/the_hidden_perils_of_covert_action.  (Accessed Aug 30, 2011).
7. Yusufzai A.  Impotence fears hit polio drive.  BBC News, Jan 27, 2007.  Available at:   http://news.bbc.co.uk/2/hi/south_asia/6299325.stm.  (Accessed Aug 30, 2011).
8. Mckenna M.  File Under WTF: Did the CIA Fake a Vaccination Campaign?  Wired, July 13, 2011.  http://www.wired.com/wiredscience/2011/07/wtf-fake-vaccination.  (Accessed Aug 31, 2011).
9. Reardon S.  CIA’s Fake Vaccination Drive Angers Public Health World.  Science, July 13, 2011.  Available at: http://news.sciencemag.org/scienceinsider/2011/07/cias-fake-vaccination-drive-angers.html.  (Accessed Aug 31, 2011).
10. Friedrich MJ.  Human rights report details violence against health care workers in Bahrain.  JAMA.  2011 Aug 3;306(5):475-6.
11. Blum W. Killing Hope: U.S. military and CIA interventions since World War II.  London, UK.   Zed Books. 2003;142, 200, 234.
12. Ditz J.   Concerns in Pakistan that USAID Officials Are CIA Spies.  Antiwar, April 29, 2011.  Available at:  http://news.antiwar.com/2011/04/29/concerns-in-pakistan-that-usaid-officials-are-cia-spies.  (Accessed Aug 31, 2011).

I’m an epidemiologist, which means that I’m supposed to be a champion of evidence.  (The definition of “evidence” is another long topic, that I hope to tackle in long form some other time.)  It also means that it has become my role to constantly debunk pseudo-science, and most commonly fake medicine.

One of my frivolous pasttimes is trying medical “therapies” that lie outside the realm of mainstream scientific belief.  I figure one shouldn’t criticize something unless one has tried that thing.  And believe you me, I’ve tried them all: Reiki, Bowen Therapy, Reflexology, Sound Therapy, Homeopathy, blah blah blah blah.

Some of them are quite pleasant.  I particularly enjoy all forms of Reflexology: it feels just great, even though there’s no evidence that it does anything it claims to do.  I will likely continue to seek Reflexology treatments, ’cause I’m a sucker for feeling good.

And I know this might offend some of my regular readers, but I have to tell you: the two most frustrating of the more popular evidence-free therapies are Homeopathy and Reiki, mostly because even their very premises are, well, completely insane.  (At least Bowen Therapy, to name one, purports to have a testable mechanism that is somewhat based on something resembling a scientific premise seated in known physiological facts.)  They are doubly frustrating because I know of so many demonstrably smart people who will swear by these forms of “therapy”, usually without the honest self-evaluation required to identify a placebo effect.

My criticisms aren’t based on any casual dismissal of premise, but on the published, rigorous evidence.  Show me new evidence and I will happily change my mind.  Seriously, I’m openminded like that.  I just wish defenders of these therapies were equally as openminded to the evidence discrediting their favourite techniques.  And, despite widespread belief to the contrary, there is heft of well designed clinical studies that have tested the more popular of the so-called alternative therapies.  Homeopathy in particular has been rigorously investigated.

Now, while I know that attempted suicide is no laughing matter, I had to laugh aloud when I read of Alexa Ray Joel’s suicide attempt…. she tried to overdose on a homeopathic drug!  That’s like trying to overdose on water!  I mean it’s possible… but just drink gallons of tap water, not a few pills from a quack’s bottle of nonsense!

As you can probably tell, I have special ire for Homeopathy, which persists in modern culture because it tries to hide amongst Naturopathy and other so-called “holistic” approaches, which frankly have stronger evidence legs to stand on.

And I have a lot of empathy for believers in Reiki because, well, there is something beautiful about envisioning a world in which one can cure with one’s “life energy” via “magic hands”.  It’s both generous and personal.  I wish it were real, I honestly do.  But sorry, the clinical trials say it ain’t so.

A lot of people reading this are going to confuse Homeopathy with Herbal Medicine.  They are NOT the same thing.  Herbal medicine employs actual pharmaco-active substances that usually do something or other in your body.  Homeopathy, if it worked, would actually violate pretty much every known law of Physics.  And again, I’m open to that possibility…. just show me some hard, reproducible and falsifiable evidence.

But, of course, no such evidence is forthcoming.  So I give you LiveScience.com’s list of the top “Alternative” medicine quackery thingies debunked in 2009. (Click the previous link for details):

1. Reiki
2. Reflexology
3. Homeopathy
4. Magnetic therapy
5. Kava

While we’re at it, here’s the same site’s list of medical myths that even some physicians keep pushing.  (I must say, even I have been guilty of the drowsy turkey one):

1. Myth: We use only 10 percent of our brains.
2. Myth: You should drink at least eight glasses of water a day.
3. Myth: Fingernails and hair grow after death.
4. Myth: Shaved hair grows back faster, coarser and darker.
5. Myth: Reading in dim light ruins your eyesight.
6. Myth: Eating turkey makes you drowsy.
7. Myth: Mobile phones are dangerous in hospitals.

Numbers 1 and 7 are particular pet peeves of mine.  Really, if we didn’t use 90% of our brains, we would have devolved brain matter generations ago.  And I am so sick of busy-body nurses telling me to turn off my mobile phone; they are never in the mood to listen to me explain the faulty physics of the premise.  Same goes for gas stations that are afraid of phones’ “static discharge” near the gas pumps: complete rubbish.

Want some comedy about this nonsense?  Check this out:

As I hope most of you know, I supposedly have a regular column/blog over at the MicroSoft Canada website.  The problem is that their interns keep turning over, and I have no idea anymore who is responsible for uploading my content!  The last article I wrote for them, and that was published, was in April of 2010.   I wrote another one in August of that year, and sent it to every one of my contacts over at MS Canada… but they all seem to have disappeared.  Or maybe my column/blog has been quietly discontinued.  I have no idea.

But I have other things to do.  So here is the article I wrote on Aug 25, 2010, meant for the MicroSoft Canada website.  I doubt I’ll be writing any more of this kind of stuff:

—

The Human Resource Gap

It’s been a while since I updated this blog.  Sorry about that.  I’ve been traveling a great deal and haven’t found a free moment to organize a thought lucid enough to be worthy of you gentle readers.

One of my recent travels took me on a lecture tour of India.  It was a bit of a game show atmosphere at times, wherein I wasn’t told the topic of lecture until the morning of the event!  But, interestingly, that’s part of what makes a public speaking career so exciting.  It’s also interesting to have actually reached a point in my development as a speaker that I feel comfortable traveling to a foreign country and culture, and delivering a two and a half hour talk to a room full of scholars… on a topic for which I had very little time to prepare.

So how was it?  In a word… fun.

Part of my journey took me to a town called Kakinada in the Indian state of Andrah Pradesh, where I met with Dr Chandra Sankurathri.  If you do a web search for his name, you will learn of his remarkable personal trajectory.  His is a story well covered in various media profiles, so I won’t go over it here.  But suffice it to say that Dr Sankurathri transformed incredible tragedy into public service of a nature that can only be called transcendent.  His foundation has educated hundreds of underprivileged and impoverished young people, and, in the past 7 years, treated almost two million opthalmological patients too poor to have otherwise received such life-changing medical treatments.

The work I’m doing with Dr Sankurathri’s foundation involves the analysis of some of his carefully kept databases.  This requires the extraction of large amounts of selected data from relative databases kept in Access format.  This sounds like a simple process, but it’s actually fairly trying if you don’t have a certain amount of database management expertise.  Luckily, a MicroSoft certified software engineer lives nearby and volunteers his pricey services to the foundation.  Frankly, I can’t imagine how much more difficult simply gaining access to the relevant data would have been, had this gentleman not been available.

More than just a paean to MicroSoft-certified technicians and engineers, this anecdote is a distilled example of a wider concern in the larger world of do-gooders.  It is true that the remarkable work of Dr Sankurathri’s foundation requires funds, and thus its founder spends almost all of his precious time courting donors.  However, his need –and that of almost all philanthropic endeavours in the low-income world– is for human resources.  Yes, both well-meaning students and seasoned Western professionals undergoing mid-life crises alike can be relied upon to donate intermittent swaths of their time to such ventures.  But the long term problem will always be finding well trained local talent to adopt middle management and administrative roles.

It’s a bit of a lesson for small businesses, as well, which, while similarly driven by a singular vision, also often operate on inconstant funding, yet rely on that most temporal of skills sets: the efficient and competent administrator.

The Grand Challenges grant seeks to identify emerging leaders in global health research and reward their innovative ideas with a hefty start-up grant.  My idea is something called “Gwitter”, which is essentially a social networking platform akin to Twitter, but which links clinicians in low income countries with specialists in high income countries, for the purposes of allowing for timely access to high quality specialist consultation.  Why?  Because lack of such access is one of the great causes of preventable deaths in the developing world.

Gwitter is a little more complicated than just a new kind of Twitter.  We aim to create an efficient online linguistic translator and a rapid speech-text-speech converter so that language and technical savvy will not be barriers to its global use.  But most importantly, we will create an algorithm for ranking responses from multiple specialists so that the most appropriate answer to any query is the first that reaches the person who asked the question.  In this way we hope to leverage the vast untapped wisdom, skills and energy of professionals in the developed workd.  Instead of asking for weeks of donated time, we instead ask for mere seconds.

(And yes, I’m aware that one of the great barriers to this project is the potential liability on the part of the consulting specialists… that’s one of the things we will work on, if we get the money.)

So why am I telling you?  Because there’s a public voting process involved in the grant competition.  I’m asking you, dear reader, to vote for my project by visiting this link and following the instructions:

GWITTER

Now, be aware that my video SUCKS.  This is because it was put together on a moving train 10 minutes before the deadline.  Do not interpret this as me not caring about the project.  It’s just that I was negotiating for a more professional video production service up until the last minute, and when that fell through my only option was to film something quickly on my webcam.

So please judge it on the merits of the project.  I hope you will vote for Gwitter!

As most of you know by now, I’m the new editor of the national newsletter of the Canadian Society of Epidemiology and Biostatistics.  We recently put out our second edition under my direction, and I wanted to share with you one of the more controversial articles I penned.

For those of you not in Canada, this country recently underwent a bit of a political storm when our right-wing government decided to do away with the mandatory long-form census.  This became a rallying cry for a lot of organizations and institutions in Canada.

I decided to explore the other point of view, and in the process risk the wrath of many of my colleagues.  But this is the nature of open intellectual activity, right?  I dunno.  In any case, I’m reproducing for you below an article from the December 2010 edition of the CSEB Bulletin on the topic of the Canadian mandatory long form census.  Here ya go…

————————————————–

A Perhaps Surprising Take on the Census Controversy

By Raywat Deonandan

CSEB’s Executive Board took a position on July 12, 2010 on the on-going census controversy, stating the following:

“We are writing in our capacity as the Executive of the Canadian Society for Epidemiology and Biostatistics. As a professional organization, we are concerned that the long-form (Form 2-B) of the Census will no longer be mandatory, and we strongly recommend that this decision be reversed.

We understand that this decision was based on two major concerns, one being that of privacy. We are not aware of any breaches of privacy over the many years that this form has been used. Statistics Canada has always protected the privacy of survey and census respondents, and it is a respected leader nationally, and internationally, in this regard.

A second reason is that of the coercive/intrusive nature of the process. We note that Canada was founded on “peace, order, and good government”. To this end, in the interests of the public good, the duty to provide information that is protected under the law is necessary. Further, as a democratic country, accountability and transparency are principles that are integral to our governance; a representative method of gathering data is foundational to satisfying these principles.

Our members are epidemiologists, statisticians, health care practitioners and other health scientists from across Canada.  The Census provides a major source of information used by our members in the research and practice areas of public health in which they are involved.  The long-form of the Census provides the only source of detailed information on specific sub-populations, including those with special needs, those living in poverty and new immigrants with language barriers, among others. The information is used extensively for research, but also for understanding population needs and for the planning of local services such as health promotion, screening, health care interventions and social services.

In addition to the intrinsic importance of the information collected, the Census long form also serves as the gold standard against which other population surveys are measured in Canada.

In our considered opinion, allowing voluntary response to the long form of the Census would be regressive. Voluntary response will certainly result in the non-representation of the Canadian population due to inadequate response in certain geographic areas. The data will be biased and hence of poor utility because people who volunteer are not representative of the population. Without representative information, accountability and transparency in resource allocation decisions would not be able to be defended.

We urge the government to reinstate mandatory reporting of the long-form of the Census, and we congratulate Statistics Canada on producing a much-needed service to Canada.”

A PDF of this letter was sent to the PMO and can be found at the following link:  http://www.cseb.ca/documents/news/Census-letter.pdf

Now, fellow health researchers, watch carefully as I, an otherwise sane and risk-averse individual, tread onto uncertain career terrain …

The big news in our profession is, of course, the federal government’s plan to cease the mandatory long-form census.  This will likely, as has been well discussed all over the country, play havoc with many research endeavours and perhaps hobble policy work.  It may also cause droughts, rust our cars, cheat on our spouses and make our babies cry; the list of its potential evil effects is seemingly interminable.  I’m not going to go over that list here.  (Yes, I’m being a bit facetious, but I just want to make clear that pretty much everyone who deals with data acknowleges that this development poses a significant blow to many important procedures that are information dependent.)

As indicated above in the reproduced letter to the Prime Minister, the CSEB has taken an appropriate official stance in opposition to the discontinuation of the long-form census.  My intent in this very informal article is not to repeat that argument, but to do something quite different.  I want to present to you a case for the other side.  That’s right: an argument for why perhaps we shouldn’t be so quick to demand that a mandatory census be pursued at all costs.

(Yes, I’m ducking right now, in full expectation of the virtual shoes that are being hurled at my head.)

Before I continue, I want to be absolutely clear about three things:

• The argument that follows is a personal reflection –an intellectual vanity, if you will – and certainly not necessarily reflective of the opinions of the CSEB, its Board or its members.
• My arguments below are in no way to be interpreted as partisan support for the current Conservative government.  Personally, I find this government to be profoundly anti-science and anti-democratic.  And while I believe that their decision to discontinue the long-form census was made for brazen and ugly political reasons, this does not mean that we cannot discuss the role of mandatory censuses in a liberal democracy on a wider philosophical stage, without the need to be dragged down by considering the singular motivations of this particular government at this time in history.
• As a corollary to the point above, my following arguments are not to be construed as support for the recent decision to discontinue the mandatory long-form census.  Rather, it is merely a quasi-academic discussion of the role of mandatory collection of personal information in a society that purports to value civil rights and autonomy.

So, let’s all take a deep breath and consider the issue from a wider social, legal, historical and ethical perspective.  Let’s put aside our professions and the keen insights we have on the fragility and power of well collected data, and consider instead some of the more macro forces that operate on liberal democracies.  Let us think, for a moment, like ordinary citizens of the 21st century, and not like epidemiologists and biostatisticians.  And by that I mean, let us remember that we live in a time when data has phenomenal power –for both good and evil—and also in a time when vulnerable people need to be armed with rights that celebrate their autonomy.

What I propose is that we explore the issue along three domains or questions: (1) How important are these data? (2) How much do you trust your government? and (3) How much do you value your autonomy?

How Important Are These Data?

We all agree that decades of research programs are in jeopardy, and that the ability to use census data as a supremely reliable comparator for validating survey sampling data is also compromised.  Potentially, the ability to make precise estimates for social planning is also affected, as is the power for watchdog groups to validate quantifiable claims made by the government.  Many bad things abound.

Yes.  The data are important.  Very important, dare I say.  The efficient running of our society may indeed depend on them.  But the existence of our society does not.  This means that a census-free society is possible; but at what price?

This is the philosophical question that faces us: where does a mandatory census fit along a continuum of rights vs responsibilities?  For the most part, Canadians believe that citizens have a right to privacy and a right to not have to share with the state some personal characteristics that have historically made populations vulnerable to abuse.  At the same time, citizens have a responsibility to allow their rights to be curtailed if the cause is sufficiently important to the greater good.

The perceived importance of census data clearly has a role in helping us to decide whether the responsibility to share outweighs the right to remain silent.  Trust in our government also plays a role, since it is they who are ultimately the custodians of these most precious bits of information.

How Much Do You Trust Your Government?

Much has been made of Statistics Canada’s fortress of dependability.  No one protects privacy and data like they do.  We Canadians have a hard time imagining our hard-won responsive and ethical governmental institutions ever compromising their honour over something as banal as census data. And indeed one would be hard pressed to find any documented instances of StatsCan ever having violated the national trust.

But let us consider the wider family of liberal democracies.  A cursory glance through the literature to seek instances of abuse of census data yields a few shocking hits.  I will list just three:

• The Nazis, seemingly aided by the computing power of IBM, used German census data to identify and locate Jewish citizens for reasons of which we are all sadly aware [1].
• A few years later, the U.S. government used census data to identify and locate Japanese-Americans for the purposes of creating internment camps [2].
• In 2005, U.S. Homeland Security used census data to identify and locate Arab-Americans for the purposes of initiating race-based surveillance programs [3].

In each of the above instances, it was argued that the public good necessitated the abuses of the data, and thus the curtailment of civil rights for a specific demographic group.  Of course, even without census data, it is possible for misguided states to pursue such draconian policies.  But there’s no denying that a mandatory national database that compels potentially vulnerable groups to identify themselves and their characteristics makes the job much easier.

It is true that all data collection paradigms, even sample surveys, that identify individuals are ripe for abuse by those with less than honourable agendas.  The crucial element that sets the census apart is its mandatory nature.  In the examples above, it would have been illegal for any German Jew, Japanese-American or Arab-American not to have identified himself.  Now extend vulnerability due to ethnicity to other demographic data types: sexual preference, age, language, maybe even marital status or elements of socioeconomic status –one cannot predict the prejudices of the future.

The point here is not that Western governments of the past did some bad things with census data.  Rather, the point is that the very existence of mandatory, state-controlled, individual-level data, regardless of how or where they are stored and released, is a tool that can be heinously abused by an ill-intentioned state.  History suggests that such abuse is most likely to occur when a state or society is engaged in a foreign war or under threat from domestic terrorism.

So let us recognize that those who are wary of sharing identifying data to the state have at least some historical precedence on their side.  Assurances of data security are irrelevant in the longest term, since the circumstances of the future cannot be predicted.  Arguments for maintaining mandatory sharing of personal information, such as in the national census, must therefore be couched within the rights vs responsibilities dialectic.

How much do you value your autonomy?

We, as professional and responsible health researchers, know the steps we are administratively required to follow when developing a project; one of those steps is to apply for ethics clearance.  Our society has determined that it is fundamentally unethical for anyone to conduct research on human subjects without first going to great lengths to secure the “informed consent” of those subjects.  Informed consent springs from a respect for autonomy, and represents the core belief that an individual must not be coerced or compelled to participate in, or share information for, projects imposed by agents expressing authority or power.

In my opinion, the national census is a form of research:  it is information collected from individuals for the purposes of drawing conclusions.  Moreover, it is research conducted on human subjects by the most powerful authority in the land, the government.  Not only are these subjects not permitted to refuse, but their consent is compelled through threat of the use of the greatest blunt instrument in the land: criminal law.

However…

We live in a society of legal and moral rights, and these rights are ultimately expressions of our autonomy.  But our rights are not absolute.  A liberal democracy expresses its acceptance of the limits of our rights by allowing transgressions against those rights to be well defined in law.  The assumption underlying a democratic state is that rights are sacrosanct, except when they can be limited for the public good.

The word “accept” may be troubling to some.  It is assumed that most laws reflect social values that have evolved over time.  As a society, we have chosen to “accept” those laws as a price for living in a free society; this is the hallowed social contract.  But the level of acceptance needs to be calibrated to reflect the true extent of need for those laws, and to allow for full appreciation of the potential costs of overly stringent application of such laws.

For example, in times of epidemic, we express our acceptance of rights curtailment by allowing the state to limit our right of assembly and impose quarantines.  Similarly, in times of extreme civil unrest, we accept that the state can even institute martial law.  In times of war, we accept that conscription –the compulsion and coercion of individuals to fight and possibly die—is a price of freedom.  More troubling still, past generations have accepted that, in times of national insecurity, internment camps could be created to segregate and control citizens with specific demographic characteristics.

And, as a less extreme example, we accept that the state can wield the hammer of criminal law and insist that we pay our taxes, otherwise society would bankrupt and fall.

In some ways, the “acceptance” of the selective curtailment of our “rights” is, in fact, our “responsibility”.  Our liberal society depends on an appropriate balance of rights and responsibilities.

So, the question every liberal democracy asks itself every moment of every day is … which public goods are worth curtailing our rights for, and which ones are not?  Moreover, what criteria do we apply to make that decision?

The problem with the census controversy isn’t that the government was invading our privacy by forcing us to share personal information.  And, it isn’t that the government is compromising our ability to make policy and to understand our population by discontinuing the mandatory census.  The problem simply is that we haven’t had two very important public debates:

• What criteria do we employ to define the expanse of the continuum between the poles of autonomy and public need?
• Where does a mandatory census fit on that continuum?

Epidemiologists, statisticians and other data professionals are saddened by the demise of the mandatory long-form census.  But one good thing that might arise from this episode is society’s engagement in these debates.  If we approach this well, we might emerge a stronger democracy with a better sense of our values.

REFERENCES

1. Black E.  IBM and the Holocaust: The Strategic Alliance Between Nazi Germany and America’s Most Powerful Corporation.  New York: Crown Publishers, 2001.
2. Seltzer W & Anderson M. After Pearl Harbor: The Proper Role of Population Data Systems in Time of War.  University of Wisconsin Milwaukee.  (28 March 2000).
3. Weber TM. Values in a national information infrastructure: a case study of the US census. 14th International Conference of the Society of Philosophy and Technology, Delft, The Netherlands, 2005.