Rights commission pans cancer registry

The Cayman Islands human rights watchdog has questioned whether legislation requiring mandatory reporting of cancer cases in the territory goes too far beyond what would be considered reasonably justifiable or necessary in a democratic society.

A bill expected to come before the Legislative Assembly for a vote next month would force doctors to report cancer cases to a government-maintained registry, with the idea of creating a more complete data profile that could be used to improve the allocation of resources and focus on fighting the disease in Cayman. If physicians failed to report such cases, they could face criminal penalties, including fines.

Currently there are about 250 names on Cayman’s voluntary cancer registry, but patients must agree to report their case before their name is added.

In a letter sent to Health Ministry Chief Officer Jennifer Ahearn last week, the rights commission noted that while the draft Cancer Registry Bill “apparently seeks to pursue a legitimate objective,” it was unclear to the commission how that objective would be achieved and whether the legislation seeking to achieve it was “proportionate” in its methods.

For instance, the bill states that every report made to the cancer registry should contain: the full name and business address of the patient and their doctor, including any aliases used; their date of birth; gender; ethnicity; a mailing address; occupation; nationality; and length of residence in the Cayman Islands.

Citing the constitutionally guaranteed right to private and family life within the Cayman Islands, Human Rights Commission Chairman James Austin-Smith has questioned how much of the information required on the cancer reports is necessary “in the interests of public health.”

“The commission requests the Cayman Islands government provide the public with the justification for every report to contain information such as the name, alias or any other names of the person to whom the report speaks, their date of birth (at most the year of birth or age of the patient would seem sufficient) and their full address, including mailing address,” Mr. Austin-Smith writes. “The commission questions whether it is not possible to anonymize patients … and still achieve the objective sought?”

In addition, the rights commission argues there must be a “credible link” between the purpose for which the information is being collected and the specific information that is required to be given without the patient’s consent. “The government cannot just mandate the collection of this data for no good reason,” Mr. Austin-Smith writes. “The draft bill currently identifies no such link.”

Also underpinning the commission’s concerns regarding confidentiality of cancer patient information is that the bill delegates that data protection duty to a registrar.

“No guidance is given to that individual to determine how best to do this,” the commission’s letter states. “What arrangements are proposed for ensuring the confidentiality of reports required from medics? Reports can be made by written document – this is unnecessary and requires unsecure medical information to be transferred physically to the registry – an obvious security risk.

“How will such records be stored and/or destroyed? What arrangements are proposed for ensuring the security of medics’ computers and that of the registry? How will they be encrypted?”

The answers to all such questions, according to the commission, are likely to mean additional costs to government if a secure cancer registry is to be maintained. The funding of the registry, according to the proposed legislation, is via “such funds as may from time to time be appropriated for the purpose … by the Legislative Assembly…”

“This is … wholly inadequate,” the commission letter states. “Funds must be guaranteed from a ring-fenced source. To do otherwise puts the security of individuals’ confidential medical data, obtained without their permission, at the whim of the Legislative Assembly and leaves the LA in a position where it can simply decide not to fund the continuing expenses of maintaining confidentiality.”

Premier Alden McLaughlin has previously addressed confidentiality concerns about the upcoming legislation.

“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,” Mr. McLaughlin said in February.

The premier said the data would help establish whether Cayman has higher rates of particular types of cancer and if there are contributory environmental factors. The bill also calls for a cancer registry board to be established, including representatives from the Health Services Authority and the Cayman Islands Cancer Society, a private sector medical representative, and a member of the public from outside the sector.

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