Cancer registry: Voluntary, yes; mandatory, no

Consider this scenario: A Cayman Islands resident receives devastating news. Her private physician informs her that the lump on her neck is, in fact, a cancerous tumor. Fortunately, the disease has been discovered while it is still in an early stage, and proper treatment should lead to complete remission.

Amid a barrage of essential information suddenly streaming toward the patient, comes a simple question from her doctor: Would she be willing to provide certain, anonymized data to be recorded in the country’s cancer registry?

The doctor explains that cancer registries help public health officials in their efforts to prevent, control and treat cancer in a population. Cayman’s Cancer Registry is a joint initiative of the Cayman Islands Cancer Society and the Health Services Authority.

After a few moments’ reflection, the patient says she does not want to be in the cancer registry because she doesn’t trust the government to maintain the integrity of her personal medical information. The doctor acknowledges her concerns, but says measures are in place to protect her information, which should be stored in a form so that it cannot be linked back to her. The patient still says no, and the doctor assents, saying it is ultimately her decision.

That’s the way our current voluntary cancer registry operates. That would change under legislation being touted by Health Minister Osbourne Bodden, the Cancer Society and health officials.

The proposed bill, which is still being drafted, would make it mandatory for healthcare labs and physicians to report the incidence of cancer among residents to the cancer registry — taking that decision out of the hands of the individual patient.

The Compass fully understands the seriousness of cancer to individuals and the community and is aware that current cancer statistics in Cayman are incomplete. We also know that mandatory cancer registries are the norm in many large nations, where the benefits of the databases have been significant. In most larger jurisdictions, safeguards and strict security regimens help offset the potential risks to personal privacy.

However, confining the discussion specifically to Cayman, we cannot support the creation of a mandatory cancer registry here, especially if it’s to be run by the government.

The reasons are both practical and philosophical.

Compared to other jurisdictions, Cayman’s government has little credibility when it comes to protecting private or sensitive data. In addition to the informal ubiquity of loose lips throughout the public sector (and outside it, too), we’ll also point to recent news reports that expose government’s information systems as being in dangerous disrepair.

First, “a series of hard drive crashes” (apparently of idiopathic origin) corrupted potentially millions of police records. What data was lost, and what might be saved, remains unknown to the public. Next, we learn that two audit reports of government’s IT systems are being intentionally withheld from the public – because of fears that outsiders could use the reports to exploit computer security weaknesses.

Simply put, government is unable to verify the security of the sensitive records they already have. Why are politicians even thinking of giving them responsibility for more?

On a more basic level, we strongly believe in a patient’s right to privacy and the sanctity of the doctor-patient relationship. On balance, for Cayman and its population of 55,000 people (about half of them highly mobile), we don’t think that the possible benefits to the greater good offered by a mandatory cancer registry justify the requisite compromising of medical privacy rights and the accompanying extension of government’s reach into personal lives.

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