HRC: Too much data wanted in cancer law
James Austin-Smith, Chair, Human Rights Commission
(CNS): The Human Rights Commission has questioned the need for the amount of information that the proposed cancer registry law will require and is calling on government to justify the encroachment it plans to make on privacy rights in the new bill. The chair of the HRC has submitted an open letter to the health ministry about the data doctors will be obligated to collect, especially given the continuing absence of a data protection law.
Urging government to deal with the data protection bill before it passes this law, James Austin-Smith said the Cancer Registry bill raises many issues surrounding privacy and data protection.
The draft bill is currently going through a consultation period ahead of its anticipated debate in the Legislative Assembly when politicians return to the parliament next month. The bill is designed to address the chronic lack of factual information in the Cayman Islands about cancer, which is one of the leading causes of death.
With only a small percentage of cancer cases being captured in the current voluntary register, the Cancer Society and public health officials have pointed to the need for a mandatory register in line with many other countries.
But in his letter to the health ministry, Austin-Smith wrote that the commission has serious concerns about the “apparent lack of proportionality” over what the law requires to be submitted in all reported cancer cases.
He asked government to provide the public with the justification for every report to have all names and alias, the full date of birth rather than just an age, as well as mail and home addresses. The HRC chair also questioned whether the data required for the purposes of research could be collected anonymously, with reporting doctors assigning unique ID numbers to their reported cancer cases.
“There must be a credible link between the purposes of collection and the information that is required for the interference with individuals’ medical privacy, without their consent, to be justified,” Austin-Smith wrote. “The Government cannot just mandate the collection of this data for no good reason,” he warned, pointing to the right to medical privacy under the constitution.
The HRC chair asked why each piece of information was needed and collecting it would advance the interests of public health.
“Respecting the confidentiality of personal medical data is a clear principle in the jurisprudence of the Convention and at common law,” stated Austin-Smith, who is an attorney. “When the Cayman Islands Government is considering an interference with the Bill of Rights … it must assess whether the interference is in accordance with the law, and reasonably justifiable in a democratic society.” He added that any interference must be based on a pressing social need and proportionate and not just merely “useful, reasonable or desirable”.
Raising concerns that there is no guidance in the law for the registrar tasked with protecting the data and potential areas for breaches, Austin-Smith questioned how records will be stored and destroyed. He also raised the issue of arrangements to secure registry computers and the transfer of data from doctors to the registry.
With the funds for the registry to be voted in parliamentary during the normal budget appropriations, Austin-Smith said that would be “wholly inadequate” and that government must guarantee ring-fenced funding to ensure the quality of the security.
“To do otherwise puts the security of individuals’ confidential medical data, obtained without their permission, at the whim of the LA and leaves the LA in a position where it can simply decide not to fund the continuing expenses of maintaining confidentiality,” he warned.
Pointing to a loophole in the law regarding offences over prohibition of disclosure of data, he explained that there is no offence in the law as it is currently written regarding those who disclose personal medical information that has been collected for the registry but has not yet reached its destination.
The proposed bill is supported by the local Cancer Society, which is trying to measure and understand the number of cancer cases here, the types patients are suffering from, survival rates, the profile of patients and the possible causes, environmental or otherwise. However, as is not uncommon in Cayman, the encroachment on privacy, a right valued above most others by many people, has caused concerns, not just for the HRC but from the broader public, and could delay the passage of the bill and the much-needed research information.
Category: Health, Laws, Medical Health, Politics
XXXX There must be a more acceptable way of gathering the information so that it does not trample on people’s privacy. I support the Government along with the Cancer Society compiling the facts on Cancer in Cayman but we are dealing with humans and not mice. Nobody wants all their business out there. Gone are the days when everyone rolled over and played dead.
The Registry is a very good idea whether being pushed by the CIG or Cancer Society. My daughter is a cancer survivor and when diagnosed the Doctors asked what the statistics were for her type of cancer. I was not able to answer and suggested this to the CC, maybe 9 years ago. I do believe that that the only demographics required are age, sex, year diagnosed and type of cancer are necessary not the full 6? page form I was told about. However, doctors are the individuals who other than the patient are aware of diagnosis but still in limbo about the Doctors being required to provide this information on the basis as is. I feel that reporting the certain criteria regarding a diagnosis as mentioned before would be easier and one less thing for a patient to have to worry about! Just my thoughts…I have declined to complete the GIC’s proposed form and the CC card until I am not required to provide my daughters name and other personal information not related to her cancer.
When is the HRC going to address the free education of resident non-Caymanian children? Relatively recent ECJ case law makes the illegality of the current set up clear.
It is an ECHR case not an ECJ case, but you are right, the principle has now been clearly determined.
Since when was getting Cancer a Criminal Offence…oh wait no sex offender registry but this…unbelievable.
Gathering this information will improve the statistics, which is good. Allowing the data to identify individuals has the potential to promote discrimination, especially when it is motivated by cost.
If we made it illegal for anyone to discriminate or charge differently because of a person’s illness, then it does not matter if a person can be identified. The issue is the fear of discrimination because of an illness.
As for cancer, the problem is the cost with poor results. This worry about cost and survival rate may soon be unnecessary.
For anyone, who is suffering from cancer or knows someone who is suffering, there is a new way of thinking about this awful disease. Watch this video from Vice.
https://www.youtube.com/watch?v=e8SvBAjXGyQ
I would have thought that the Ministry of Health would have had the foresight to run this by the HRC and the Ethics Committee, before trying to make it a law.
In the UK all legislation has to be independently vetted for human rights compliance before it can be put forward for consideration. That process has been in place for at least the last 25 years so it seems strange that the Cayman Islands still has no similar safeguards.
Reading the full draft of this nonsenses I think it’s time for some people to wake and realise that anti-social and repressive legislation doesn’t work in 2015.
6:31
It should be no different here, whats good for Brussels and the UK is Good for these Islands. After all, the human rights was established in Brussels.
The Cancer society should be forcing Government to shut down the GT dump, the potential breeding ground for hazardous and cancer causing Chemicals.
It’s simply overkill with no legitimate objective. The whole package looks like a blatant violation of ECHR Article 8. In the UK cancer stats have to be gathered anonymously because of this consideration. Go ahead, pass it into law and then watch the litigation come rolling in.
In the UK everyone also has the right to opt of the transfer of their medical records onto any central database – something the Cancer Society seem very reluctant to admit. I wonder why that is?
Seems like just another reason to keep Caymanians down. Insurance can turn you down, employers can do so as well. Who is pushing for this so much? I have discussed this with friends and for the most part all of us feel that there is something sinister about it. This government should focus on dealing with the dump and unemployment about Caymanians! Can a human rights lawyer say if this could be pursued as a violation of an individual’s rights? Would love to know.
I had heard it was the Cancer Society, they were pushing the online petition.
Medical insurance rates will most certainly rise to even grater heights than they are already. Where does it end?, would doctors now be in violation from the centuries old vow when accepted into the medical fraternity of patient client confidentiality, some doctors have gone to jail protecting that privilege, this is dictatorial governance and government who have been lobbied by ulterior motivated parties, most likely money is the root cause.
Agree, this will NOT benefit any cancer patient, period. Insurance will skyrocket.
Unlike other nations, we have a revolving door of expat workers that will skew the statistics and make fair documentation impossible. We are lopsided at best.
I call GDPR and think all patients should protect 100% PRIVACY!!!
The HRC is correct and, further, threatening to fine doctors is demeaning and discouaging. While the general concept seems reasonable, this approach does not seem appropiate for non-communicable diseases. Wonder if it’s currently mandatory, at risk of fines, to register all HIV or STD cases?