Cancer registry: An invasive gov't procedure

The case for a mandatory cancer registry in the Cayman Islands has not been made — and probably can never be made. Although its proponents may be well-intentioned, they are lobbying for an initiative that deserves to die right now in its legislative tracks — before it metastasizes one iota further.

In essence, the debate over the so-called Cancer Registry Bill boils down to a conflict between two fundamental, but conflicting, principles: the safeguarding of individuals’ private information versus potential benefits to the greater good.

We at the Compass agree almost entirely with the issues raised recently by local attorney James Austin-Smith, who is chairman of the Cayman Islands Human Rights Commission. Among his concerns:

The great degree of detail of the personal information being gathered

The lack of a “credible link” between the information being provided and its intended purpose

The lack of explicit protections for the information government collects

In other words, the government has failed to fulfill its obligation to explain exactly a) why it wants the information it seeks, b) what it is going to do with the information, and c) how it is going to keep that information private.

Instead of specific practical reasons as to why Cayman needs a mandatory cancer registry, what we have heard thus far from lawmakers, health officials and bill advocates has consisted of non-germane generalizations (i.e., most large nations have mandatory registries), vague bromides (i.e., cancer registries can assist research, diagnoses and deployment of public resources) and indeterminate promises (i.e., the data will be kept confidential).

Not nearly good enough.

In order for the government to interject itself into the physician/patient relationship, the need and the benefit must be obvious and compelling. In this instance, it is neither.

Remember, we are dealing with patients who are engaged in the greatest fight of their lives — the fight to save their lives.

In so many instances cancer patients are physically weak, and emotionally even more so. The government has no business intruding into the private lives of its most vulnerable citizens. If ever there were “no-trespassing” territory for our ever-expanding government with its voracious appetite for dollars and data, this would be it.

And to what purpose?

Cayman is a minuscule community with a largely migratory population. With only 55,000 residents, any information collected will be empirically insignificant. It will not lead to the prevention of even one case of cancer or result in more effective treatment for those already diagnosed with the dreaded disease.

Proponents of this legislation promise what they cannot deliver, namely that any information collected, including the names and medical minutiae specific to individual cases, will remain confidential.

Pardon our skepticism. We are in the news business and routinely are the recipients of leaked, oftentimes damaging, confidential information from both private and public sources. It has become almost a local joke — promulgated by North Side MLA Ezzard Miller — that he has received yet another delivery of confidential information from a disgruntled government employee to the windscreen of his pickup truck.

When contemplating any initiative by any government, especially those regarding the gathering of private information about its citizenry, we are reminded of the medical dictum, “Primum non nocere” … “First do no harm.”

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  1. I think what is most disturbing about the campaign to introduce this legislation are the attempts to compare it to the UK’s SUS (Secondary Uses Service) and claim that it is nothing new.

    Whilst it is true that the UK accumulates vast amounts of medical data and uses it in much the same way as the Cancer Registry records would be, there are a number of major differences.

    To start off with much of the data is anonymised or pseudonymised. Even when patient details are included the amount of information available is far less comprehensive that that being demanded by CIG.

    But the most important difference is that patients in the UK have legal right to opt out and there’s a very good reason for that – mandatory registration would be a breach of the patient’s human rights. The UK also has to take into account the requirement of the Data Protection Act that specifies – Personal data shall be adequate, relevant and not excessive in relation to the purpose or purposes for which they are processed. What the Cancer Registry proposes does not remotely comply with that requirement, in fact quite the opposite.

    When legislation is drafted in the UK it is subject to independent legal scrutiny before being considered – it might be a good idea to do that here before this all degenerates into expensive litigation.

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