Career Suicide

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…

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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.