By Malcolm Cunningham,听Institute of Cognitive Science, 杏吧原创 University

Summary of the Issue
Following the recent Canadian federal election, there has been an upsurge of public discussion about reinstating the mandatory long-form census. The previous government canceled it in 2010 citing privacy concerns and coercive data collection methods (people compelled under threat of prosecution to complete survey questions) as main reasons for its demise. The debate, it seems, is quite simple; either you support reinstatement or you do not. A debate cast this way, however, reflects only particular interests鈥攖hose of organizations that consume census data and the census creator itself–at the expense of people who provide data. I argue that the data provider perspective is largely missing from the national discussion and needs to be included. Moreover, now is a fortuitous time to consider a new viewpoint as the newly elected federal government brings promise of change. We have an opportunity not only to reinstate the long-form census but also to improve it by adding this new perspective and redressing rather dated legislation.

The remains the basis of the mandatory long-form census. Yet since 2000, Canadian public institutions (e.g., hospitals, schools, universities, colleges) have recognized and acted on the need for rigorous research protocols to guide ethical collection of human information. Thus while the Statistics Canada Act languishes in an old interpretation with dated protections for people who provide census information, publically funded research has moved on. Simply reinstating the mandatory long-form census, therefore, is to re-admit the status quo without question. So while this blog acknowledges a need for large public data it does so by challenging readers to consider how we might improve protections for data providers in both Act and census. The goal is to provoke reasoned discussion about ethical implications of census taking in the 21st century that lead to constructive solutions.

Who Am I?
I am an adjunct-researcher in the Institute of Cognitive Science at 杏吧原创 University. I received a PhD in measurement and evaluation from the University of Toronto in 2012. I use large-scale public data for research purposes and have experience with developing research proposals requiring protections for people supplying information.

What Perspective Does This Blog Represent?
There are three recognizable stakeholders in the mandatory long-form census debate–the survey creator, data consumers, and data producers. Perspectives of two stakeholder groups completely dominate national discussion. There are well-positioned arguments from the census creator, Statistics Canada, and various groups whose daily business involves consuming large amounts of census data (e.g., media organizations, corporations, researchers). These arguments often speak to the need for mandatory census data collection as a vital tool in our understanding of a changing Canada (although, notably, Statistics Canada has recently softened this position). As these groups represent important vested interests in maintaining and even expanding census creation and use, it should come as no surprise they strongly support the status quo, reinstatement. But theirs is already a well known position and this blog would add little by reflecting their views. Representing perspectives of the largely silent group that produces this data, however, is another matter. You and I are the ones asked to fill out the forms. We are more vulnerable to data breaches and clearly have the most to gain or lose when decisions about the mandatory long-form census are finalized. By reflecting a hitherto unreported perspective, therefore, this blog represents these largely silent stakeholders in an effort to introduce a new dimension to the national discussion.

Political Affiliation(s)
This is not a political blog. Although the long form census was terminated under the previous federal government I am in no way associated with any government players or the party involved with its demise. Nor am I associated with any of the newly elected federal government players or their party. The truth is, I am not associated with any party. My interest is purely with the substantive issues and crafting a better and more durable solution.

The Issue in Brief 鈥� Research Ethics and the Long-Form Census
Statistics Canada does not conform to a modern understanding of research ethics. A search of the website reveals an appeal to potential participants about the importance of complete information and reassurance that data is collected only in the strictest of confidence. Participation in two census forms is currently mandatory (Population and Agriculture) where one’s failure to comply, neglect to answer, answer falsely or knowingly deceive may result in fines or even imprisonment. There is far more attention paid to data–the products of various surveys鈥攐n the Statistics Canada website than to the participants who supplied this data. An ombudsman exists specifically for businesses who complete surveys but not for individual Canadians. Indeed, beyond statements about the importance of complete data, Statistics Canada says little about purposes of surveys, what they entail, risks and benefits, or potential uses of collected data.

At present, whether or not Statistics Canada should conform to principles consistent with the Tri-Council policy on research ethics is an open question. Some may say that Statistics Canada data is strictly collected for census purposes and not research. It follows that such data should be exempt from protocols otherwise imposed on public research. But this is really a disingenuous argument. Although there is no question Statistics Canada data is used for census purposes, researchers from coast to coast use the same data to conduct research and have done so for decades. To say that any datum will not be used for research purposes, therefore, is to wilfully ignore the integral use of all Statistics Canada data. Even the corporation’s own assurances about confidentiality grows increasingly tenuous as our ability to link new databases together affords a level of analytical granularity unimaginable in 1971. So the question of Statistics Canada’s adoption of a modern interpretation of research ethics is arguably far more about a growing urgency to protect those who participate in supplying survey information in today’s world and less about maintaining definitional boundaries that were once more meaningful.

Adoption of a modern research ethics policy consistent with the Tri-Council document would signal important changes;

• Survey design, data collection, analysis, and data availability would be subject to approval by an independent ethics board (every university in Canada currently has such a board). This board would serve as the final arbiter in situations were there are questions about ethics.
• Statistics Canada would redesign the website to more directly appeal to survey participants. It would offer more information about purposes of surveys (including potential research and commercial uses), what they entail, and what risks or benefits might accrue
• Direct contacts would be available at Statistics Canada in the event participants have questions or concerns
• Unless successfully argued in front of an independent ethics board, mandatory data collection would a thing of the past. Only in exceptional circumstances should the corporation be able to successfully argue for coercive data collection methods.
• Voluntary and informed census participation would likely signal a change in the corporation’s approach to survey design, administration and analysis. Attention to design details (e.g., shorter surveys, more attractive formats) would be related to completion rates. It may be necessary to include incentives to entice greater compliance. Large representative sampling designs may have to give way to smaller targeted (perhaps linked) designs.
• Statistics Canada currently generates revenue from organizations and individuals wishing to access to data repositories. A modern ethics protocol would require the corporation to be completely transparent, signalling potential conflicts of interest.

By Hymie Anisman, Dept. of Neuroscience, 杏吧原创 University

Last week鈥檚 blog outlined several issues related to addictions in general, and then considered some features that were unique to gambling addiction. A discussion (rant?) followed regarding the role of the gambling industry, as well as governments, in facilitating and fueling gambling, and what their creative solution was to enhance their profits, yet 鈥榮eemingly鈥� acting responsibly to deal with the addictions that may emerge as a result of gambling. This amounted to donating a small percentage of gambling revenues to research that might point to ways to prevent gambling addiction or cure this condition if it developed. The motives and behaviors of the 鈥榞aming industry鈥� are clear; get the cash, but without being perceived as having contributed to negative outcomes.

There鈥檚 still another element that needs to be examined more closely. Specifically, the researchers grazing from the trough containing gambling revenues are in a bit of an ethical conundrum. They are, after all, taking money either directly or indirectly from the very organizations that contributed to the problem. A report by Rebecca Cassidy did a good job itemizing some of the factors that compromise gambling research, pointing out that too often research in this realm is devoid of disclosure policies, and as she put it, 鈥榤any researchers are unreflective or outright defiant about industry influence鈥�, and too often, a 鈥榩artnership model鈥� seems to exist between researchers, regulators and policy makers, to the extent that they come to believe that 鈥榳e鈥檙e all in this together鈥�. A cozy little family!

In other research domains, such as in the assessment of particular drugs to treat illnesses, scientists are required to disclose on research publications where funding was obtained, including private funding or from the public sector (e.g., drug companies), and to indicate whether the researcher had any vested interests (e.g., shares) in the company, or whether they sat on scientific boards or were being paid by the pharmaceutical company. Shouldn鈥檛 researchers studying gambling addiction similarly provide full disclosure? They typically disclose that their research was funded by such-and-such a granting agency, but shouldn鈥檛 they also make clear whether the funds actually came from (directly or indirectly) the 鈥榞aming industry鈥�, including government operated gambling venues and activities. Furthermore, shouldn鈥檛 they be indicating whether they received funds, above and beyond those ear-marked for research, such as payment for their efforts (cash or in-kind)? How close is their relationship with the research funders, now or in the past? For instance, have they served as a paid consultant for gambling agencies?

In her critique of the gambling business and research, Rebecca Cassidy pointed to examples of conflicts of interest, concluding that a trust deficit exists concerning what researchers in the field are saying in relation to gambling. As if on cue, some researchers began to protest, much too shrilly I believe, that they have never felt pressure to make or remove particular statements in their published reports. They go so far as to argue in favor of 鈥榯ransparency鈥� and even offer guidelines as to next steps, much as if there is a possibility, however remote, that there might be some wrong-doing out there, but they鈥檙e above the squalor. Aside from this apparent excessive protestation, I wonder if it dawned on them that such rebuttals would be better coming from someone who was at arms length from the issue. In the end, we still come back to the points made earlier. Is it enough to just disclose who funded a particular research project, or should disclosure include statements as to whether the researcher received, now or in the past, personal funding in cash or in-kind?

It would be unwise and unconscionable to paint all gambling researchers with the same broad brush. Most of the research descriptions I鈥檝e viewed on the sites provided by gambling agencies involved funding to excellent researchers, doing very worthwhile research. But, often there are obvious problems with some of the research. For starters, researchers are often restricted from access to casino patrons. Understandably, those running the casinos might be reluctant to have scientists bothering the clientele, or taking time away that could more profitably be spent gambling than answering questions. So, it鈥檚 often the case that scientists must conduct their research in 鈥榓rtificial鈥� gambling venues within university research settings, without any of the normal bells and whistles that are common in real casinos. Some university-based research has involved panoramic virtual reality displays or other venues where there are multiple slot machines, and other doo-dahs to create an environment that facilitates entry to the 鈥榯rance-like state鈥� that often happens with gamblers. In other instances, however, there鈥檚 only a single lonesome slot machine in an otherwise barren room, and the roulette wheel is a home-made device that doesn鈥檛 come close to what one sees at a casino, resembling something seen at a children鈥檚 carnival (essentially a wooden version of a 鈥榃heel of Fortune鈥�). They can call it a 鈥榞ambling lab鈥�, but the reality is that it鈥檚 an unconvincing facsimile of I don鈥檛 know what, but certainly not a casino!

As Cassidy indicated, even some of the research questions being funded are puzzling. Some granting agencies continue to fund projects to find out about the frequency of gambling problems (don鈥檛 we already know that it鈥檚 most common among those who can least afford it?). There are also studies that have attempted to assess neurobiological correlates of gambling by using imaging procedures to monitor brain changes while people are engaged in a virtual gambling exercise, which seems like a reasonable and interesting idea. Other studies opted to assess particular hormones (e.g., cortisol) in saliva in an effort to gauge stress responses. Remarkably, other studies have examined peptide hormones, such as ghrelin, in saliva even though these molecules are simply too large to be reliably detected in saliva, and are most certainly not relevant to activation of specific types of receptors present in brain regions associated with reward processes or impulsivity that might be linked to addictions.

There have also been many funded studies that attempted to get people to stop gambling, although these studies have unfortunately not been particularly successful. This is not unexpected as once well-entrenched, any addiction is difficult to eliminate. Some of these studies were, to be fair, grounded on reasonable theoretical premises (e.g., using particular therapy or other strategies to curb addiction). In other instances, the approaches used are, it seems, somewhat na茂ve. In one case, for instance, researchers chose to examine whether pop-up messages on slot machines reminding players to 鈥榖et within their limits鈥� (an oxymoron, if I鈥檝e ever heard one, akin to 鈥榙oing irrational things rationally鈥�) would diminish gambling. Is it remotely possible that this sort of messaging will have much of an effect on a pathological gambler busy feeding their cravings at a casino? Nothing else has worked to curb their habit, and if their decision-making abilities have been hijacked (as in the case of drug addictions), it鈥檚 hardly likely that they鈥檒l pay any attention to such pop-up message. Certainly not if these messages are divorced from other extensive therapeutic programs? Perhaps the gambling organizations sponsoring such research are aware that this strategy won鈥檛 work, and thus there鈥檚 no danger of their patrons not coming back; however, it provides these agencies with legitimacy regarding their willingness to deal with the problems.

Governments aren鈥檛 about to abandon their pro-addiction policies. They鈥檝e become addicted to the gambling profits, just as they鈥檙e greedy for the profits from alcohol and cigarettes. So, I suppose that the alternative is that we make the best of the situation. Indeed, I wouldn鈥檛 suggest that revenue from gambling not go into research, but this should be done responsibly. Rather than each province, state, or private sector company running their own granting agency, each having to deal with independent up-front administrative costs, it would be much more efficient to have research funding consolidated so that grants are awarded by a single agency with a track record in this capacity (e.g., Canadian Institutes for Health Research; CIHR). If nothing else, such an agency would be several degrees removed from the gaming establishment, and perhaps gambling researchers will have less of an opportunity to cozy up to the funders. Otherwise, somebody more suspicious than me might conclude that the fox is guarding the henhouse.

Hymie Anisman has recently authored two book听providing an evidence-based approach to understanding the role of stress on human health, and identifying听characteristics and听behaviours that render people more vulnerable or resilient. Both are available at Amazon.ca

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By Stuart J. Murray, Department of English Language and Literature, 杏吧原创 University

Earlier this spring, I was asked to present my work on bioethics at the annual . In 7 minutes, I was to present a style presentation: 20 images, each displayed for 20 seconds, with my dynamic and charismatic voice-over. It was billed as an occasion to address government, industry, and community 鈥渟takeholders.鈥�

I declined.

How could anyone repackage, in palatable sound bites, the ethical concerns plaguing Canada鈥檚 prison system, its crisis of mental health, its overuse of solitary confinement, its quiet racism, its suicides and homicides? The presentation format, which encourages chirpy advertising for applied research or 鈥渃ommercializable鈥� outcomes, seems to forbid any serious discussion of an escalating crisis. Certain truths simply cannot be spoken in such a setting.

It some respects the Research Chairs Symposium is an apt metaphor for the prison system itself. Both impose a structural violence that is largely invisible, camouflaged by publicity extoling quantifiable 鈥渆xcellence,鈥� statistics on economic efficiencies, and 鈥渁ccountability.鈥� If we were to address these managerial abstractions on their own terms, we would be confronted with 鈥渃ontent鈥� that seems neither ethical nor unethical as such. But ethics is a question of form鈥攖he concrete ways that these structures affect the life of research and research into those lives (and deaths) lived within the structural confines of the prison.

Ethics is a matter of what can be said, thought, and brought to public consciousness. And yet, the terms that govern public presentation and deliberation impose a certain censorship. This is not simply to say that old-fashioned repressive measures stop people from speaking or publishing. We might call this a police function. More insidious, however, is the censoring violence that seems to come from nowhere, as if it emerged from and was recommended by the complex, anonymous system itself. By invisible hands.

Ashley Smith image taken from a coroner’s video. THE CANADIAN PRESS/HO

As an example, we might consider Ashley Smith鈥檚 treatment at the hands of the Correctional Service of Canada (CSC). On 19 October 2007, Smith, a mentally ill nineteen-year-old inmate on suicide watch, tied a ligature around her neck and strangled herself to death while in the care and custody of the CSC. Correctional officers watched and filmed the event from outside her cell (the in Canada is to video-record all strip searches and 鈥渦se of force鈥� incidents). Three front-line staff and one correctional manager were initially charged with criminal negligence causing death, but these charges were soon dropped; prison staff were merely following the warden鈥檚 orders not to enter the cell 鈥渋f she鈥檚 still breathing.鈥� Effectively, nobody was responsible for this death, even after the jury in the declared her death a homicide: death at the hands of an anonymous system, as it were.

During her final year of custody, spent almost entirely in solitary confinement, Smith was transferred 17 times between 9 different institutions across 5 provinces. Each transfer re-set the clock on her seclusion, sidestepping legal limits for the length of time it can be used. Several depict Smith being forcibly restrained by multiple correctional officers (or were they healthcare providers?) outfitted in full riot gear; another video depicts one of Smith鈥檚 extralegal transfers between facilities, hooded and being duct-taped into the seat of an airplane, pleading with her captors. Mental illness in the guise of terrorism, calling for counter-insurgency measures, it would seem. In this light, the system must be understood as remarkably coordinated across and between correctional facilities鈥攁 structural violence if ever there was one. Staff were instructed to lie and about Smith in order to give the illusion that efficiency and accountability prevailed in their institutions. In terms of mental health care, of course, this is a picture of utter inefficiency and unaccountability, with no apparent justification other than cruelty and violence themselves.

The censorship of repressive police functions often operates hand-in-hand with a structural violence that is more furtive because it is invisible, anonymous, systemic, and complex. The gears and mechanisms of these structures are further eclipsed by the celebratory din of managerial efficiency, accountability, and excellence. The spectacle is essentially empty, but it represents the new face of our public research universities, 鈥渃olonized,鈥� as have recently argued, by a 鈥渕ercenary army of professional administrators, armed with spreadsheets, output indicators and audit procedures, loudly accompanied by the Efficiency and Excellence March.鈥� Meanwhile, government and media-sponsored discourses on security and risk鈥擯echaKutcha style鈥攕erve to justify in moralizing sound bites the police function, and shore up the structures meant to ensure public security and mitigate risk. Public research funds are hijacked by government, redirected to business 鈥減artnerships,鈥� ushering in a new 鈥溾�� for Canadian science. The new fundamentalism silences scientific evidence.

The strategy is not working, although it may win votes. According to the , Canada鈥檚 prisons are sites of racialization and hyperincarceration of people of colour, notably for Black and Aboriginal populations. reports in particular that the number of incarcerated Aboriginal (self-identified Inuit, Innu, M茅tis and North American Indian) persons is disproportionately high: 33.0% of incarcerated women, 22.6% of men, while Aboriginal adults represent barely 3.0% of the Canadian population鈥攁n over-representation that far exceeds the per capita over-representation of African-Americans in the U.S. prison system.

31% of offenders in segregation units self-identify as Aboriginal. However, these statistics only represent federal institutions, not provincial ones. They do not include the many institutions that run segregation facilities known euphemistically as 鈥渁lternative housing arrangements, secure living environments, special needs units, mental health units, intensive support units or gang ranges.鈥� The flippantly refers to these as 鈥淪egregation 鈥楲ite鈥�.鈥� These provincial units operate outside of administrative segregation law, and therefore, according to the Correctional Investigator, 鈥渄o not have [the] appropriate level of procedural safeguards/oversight.鈥� Despite what our prime minister , these are sociological problems.

How do we come to terms with these numbers and the concrete lives they represent? And what is our responsibility, as a society, in the care of those who are imprisoned and, increasingly, diagnosed with a mental illness? Structural violence is social violence. If we think that ethics is limited to what it is right or wrong to do, this remains far too abstract unless we can account for the structural conditions under which something will appear for us as right or wrong鈥攁s well as the terms in and by which we think these thoughts, communicate them, and deliberate them publicly.

Language is not a neutral structure in this regard; it is not simply a tool, but rather actively structures our relations with others. One essential task of ethics is to intervene into the structural conditions to make these truths speakable, to bring them to public consciousness, and to foster critical dialogue. In other words, it is an ethical injunction to create conditions for public discourse, and to expose the invisible hands that manipulate in advance what truths can be spoken, when, where, and to whom.

Forthcoming in听APORIA: The Nursing Journal

Based on

Murray, S.J., & D. Holmes (forthcoming). Seclusive space: Crisis, confinement, and behavior modification in Canadian forensic psychiatry settings. In Extreme Punishment: Comparative Studies in Detention, Incarceration, and Solitary Confinement. Eds. K. Reiter & A. Koenig (Palgrave-Macmillan).

Murray, S.J., & D. Holmes (2014). 鈥�,鈥� truth-out.org (10 March).

Holmes, D., & S.J. Murray (2014). Censoring violence: Censorship and critical research in forensic psychiatry. In Power and the Psychiatric Apparatus: Repression, Transformation and Assistance. Eds. D. Holmes, J.-D. Jacob, & A. Perron (Ashgate Publishing), 35鈥�45.

Top Image courtesy of Stuart Miles at听FreeDigitalPhotos.net
Bottom Image courtesy of Naypong at听FreeDigitalPhotos.net