Cancer registry: No cure for privacy concerns

Public officials are pondering a piece of legislation that would create a mandatory cancer registry for the Cayman Islands, whereby local doctors will be forced – under threat of financial penalty – to report all incidences of cancer and brain tumors they discover in residents of the territory.

This is an unnecessary and potentially dangerous proposal that should not advance any further.

We have no doubt the idea of having a mandatory cancer registry has sprung from the best intentions of supporters – including the Cayman Islands Cancer Society, which would get two of 10 seats on the brand-new appointed Cancer Registry Board.

However, we fail to see how the law, in practice, would have any significant impact on the prevention or treatment of cancer in Cayman. What it would do is increase the risk of individuals’ sensitive personal information being compromised, while expanding the size and reach of government.

Cayman’s current cancer registry, established in 2010, contains information that has been provided at the discretion of patients. Officials now say “voluntary” isn’t good enough, and they need a complete dataset in order to gauge the true prevalence of cancer so they can deploy resources more effectively.

Premier Alden McLaughlin said the mandatory cancer registry will help establish whether Cayman has higher rates of particular types of cancer and if there are contributory environmental factors. First of all, we doubt that any unique and useful statistical insights could be gleaned from that particular set of data, considering Cayman has a population of only 55,000 people, half of whom are highly mobile.

Allow us, though, to pose a hypothetical: Let’s assume that Premier McLaughlin (who replaced Bodden Town MLA Osbourne Bodden as minister responsible for health) succeeds in getting the mandatory cancer registry established. Let’s assume that, by analyzing the data, officials discover a higher rate of salivary gland cancer among people who live within a half-mile of the George Town landfill. … Or a higher rate of lung cancer among the poorest Caymanians, who are the most likely to smoke cigarettes. … Or a higher rate of skin cancer among ethnically Anglo residents who work in the tourism industry. What then?

Beyond such banalities as “Steer clear of the dump,” “Don’t smoke,” and “Wear sunblock,” the only honest answer officials could possibly give is likely to be ineffectual or impractical.

In order to function, governments, including Cayman’s, must gather some personal information about their citizens. The sacrifice of some privacy is an unavoidable cost of living in an organized society. That being said, whenever the government proposes to collect even more personal data, the onus must remain on the government to 1) justify that sacrifice by clearly demonstrating the direct benefits to the collective, and 2) provide actual assurance that confidential information in its possession will remain confidential.

Premier McLaughlin stated, “I understand that confidentiality is a major issue for some. I want to assure the public that the data collected is kept strictly confidential. Under no circumstances will the information ever be shared with outside parties.”

Are you sure about that, Mr. Premier?

An exhaustive recounting of all the times and ways over the years that Cayman’s public sector has leaked, spilled, otherwise exposed or flat-out lost track of confidential information is unnecessary. We’ll simply refer to the government’s latest breach of private sector trust – when the information manager for the Immigration Department released a database containing, line by line, the wages of more than 20,000 work permit holders their job titles, nationalities and start dates. Although individuals’ names were redacted, the spreadsheet presented no great challenge to identify many of the individuals from the data provided.

The resulting outcry (including legal action) has sparked calls to revisit the Freedom of Information Law, reconsider the implementation of data protection legislation and to reevaluate what sensitive information government possesses, why it has it, and how it could learn to get by without it.

If government doesn’t absolutely need information on private citizens and private sector companies, it shouldn’t have it – and it should destroy it. 

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  1. You are absolutely correct. Too high a risk of this very private information leaking.

    Sadly I believe we have a higher cancer rate than we should due to the toxic chemicals sprayed to kill the mosquitoes.
    And there is some evidence of a higher cancer incidence among those living downwind of the dump.

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  2. The year is 2015 and it is known that sunscreen doing more harm than good. Melanoma on a sole of your foot is not caused by sun exposure. US gov’t to withdraw longstanding warnings about cholesterol. It helps to stay informed and live your life with no fear.
    As for a mandatory cancer registry,much ado about nothing comes to mind. A co-worker, just after 2 years on this island, was diagnosed with an aggressive brain tumor and died shortly thereafter. What registering this case would have accomplished?

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