A mandatory program adopted by the New York City Board of Health last month to monitor blood sugar records in the name of diabetes prevention is being carried out without patients’ knowledge and informed consent, according to city officials.
In addition, patients are not free to opt out of the program, although, officials said, NYC residents can ultimately decline to be notified if their blood glucose levels are found to be elevated – but doctors will still be contacted.
The program has been praised by health-care officials in New York but severely criticized by medical privacy experts and analysts as overly intrusive and constitutionally questionable. Some fear the program will spread to other cities.
At issue is a regulation the NYC health board passed in December requiring laboratories to electronically transmit to the Department of Health the results of every patient who comes in for a hemoglobin A1c test – a lab evaluation that measures three-month blood sugar level averages and is used by physicians to determine whether patients are keeping glucose levels under control. The city’s A1c mandate is the first-ever required government tracking of a chronic, non-communicable disease in the United States, officials said.
The results are then kept in a department-run computer database, along with the patient’s name and, when possible, date of birth and address; when elevated glucose results are measured, the department notifies the patient and attending physician, unless the patient declines notification; again, the doctor will still be notified.
NYC health officials have pointed to what they call “epidemic levels” of new diabetes cases in the city as justification for the mandate. Officials say 9 percent of adult New Yorkers – or about 530,000 people – know they have the disease, but “another 265,000 may have diabetes and not yet know it,” the city health board said in a statement.
“Diabetes is epidemic in New York City and throughout the United States. And what we’ve decided to do is to begin to apply traditional public health tools to this emerging epidemic,” said Dr. Thomas Frieden, NYC health commissioner, adding that “public health has traditionally monitored not only communicable but also non-communicable diseases, such as lead poisoning, cancer and other non-communicable diseases.”
All about privacy
Health experts and privacy analysts following the issue, however, raised doubts about the merits of the program early on. They are especially concerned with any level of government – city, state or federal – trying to conceal the collection of personal medical data, and say they see it as a major breach of confidentiality.
Robin Kaigh, a New York medical privacy attorney who attended a Department of Health hearing about the program in August, told WorldNetDaily the public was initially led to believe patients could opt-out of the mandatory reporting at the time blood was drawn.
“It was an extremely aggressive act for them to remove the opt-out – so now we have patients giving their blood thinking that the information will remain private between the patient, his doctor and his lab, when in reality those results will be given to NYC’s Department of Health without their knowledge or consent.”
Further, Kaigh says, “there was no opportunity for the public to ask questions at that August hearing, so there was no ability for the public to give any input but a few-minute speech followed by a paper submission. And since no questions were allowed, the public speeches were given without adequate information from the city.”
Therefore, she said, there was an insufficient public forum, as well as inadequate information provided by the Department of Health. “In effect,” she said, “the Department of Health planned this program with minimum disclosure to the public.”
Sue Blevins, spokeswoman for the Institute for Health Freedom, says besides the privacy issue, the program’s “lack of informed consent” by the patient is her greatest concern.
“This is a fundamental question of whether citizens have the freedom to have a private contract … and relationship with a doctor and other health-care provider. If so, do they have the right to contract to maintain their information privately?” she said.
Andrew Tucker, a spokesman for the NYC Department of Health, confirmed patients were not told at the time their blood was being drawn the results would be sent to the agency and kept there in a database, suggesting instead that may be an issue doctors could discuss with their patients.
He also told WorldNetDaily patients actually do have the ability to opt out of the program – eventually.
“The details are still being worked out, but what [patients] can opt out of is the intervention” – meaning, a patient can opt out of being notified when his or her blood glucose levels are elevated, he said. “What they cannot opt out of is the blood-sugar reporting.”
In an interview with National Public Radio, Frieden downplayed privacy concerns.
“We’ve been keeping confidential medical information for 100 years; we have not had a breach in confidentiality,” he said. “So there is no way an insurance company or even another doctor, other than the one who is caring for you, will get access to this information if you’re a diabetic in New York City.”
And, added Tucker, “the law is written so carefully that … the health department can only share this information with the patient and the treating physician.”
But critics say having to surrender personal medical information against their will to anyone – government agency or otherwise – is an invasion of privacy. Furthermore, Blevins said, anytime people suspect their information will not be held in confidence, they tend to withhold information or provide false information to physicians and health-care providers. So the effectiveness of programs like the NYC diabetes initiative will be substantially diminished, Blevin contends.
“Just as you would never want to pit a person against his clergy, or a husband against a wife, there are these relationships that the government should not be coming in and pitting people against each other,” she said.
Michael Cannon, director of health policy studies for the libertarian Cato Institute, told WorldNetDaily the problem of government privacy invasion is becoming more pervasive.
“The right wing wants unlimited power to spy on suspected terrorists, [and] the left wing wants unlimited power to spy on diabetics,” said Cannon, who is also the co-author of “Healthy Competition: What’s Holding Back Health Care and How to Free It.”
“This is an inevitable consequence of government health-care programs,” he said. “When the government begins to pay for people’s health care, in order to finance that, it taxes you, and you lose some of your freedoms. Then they begin to take an interest in your health, and they pry into your medical records, and you lose your privacy along with more of your freedoms. The next step is [government] will decide your behavior is costing them too much money and they’re going to regulate your behavior, and then you’ll lose a lot more of your freedoms.”
Other health experts say they understand the boldness in tackling one of the nation’s worst medical problems. But at the same time they, too, worry it will lead to wider government monitoring of a range of other conditions and lifestyle choices.
“Because of the enormous number of people affected and the costs, chronic diseases have become the most prominent issue in public health,” Lawrence O. Gostin, director of the Center for Law and the Public’s Health at Georgetown and Johns Hopkins universities, told the Washington Post.
“There are lots of good reasons to do this kind of thing, but the questions it raises all have to do with the nanny state: Should the government be collecting this kind of information? Should it be intervening like this?” he told the paper. “You can imagine it getting to the point where you have a public health worker showing up at your door and asking, ‘Did you remember to exercise, eat right and take your medication today?'”
As for Blevins, the whole issue boils down to one of attitudes between elected and appointed officials and the people they are supposed to serve.
“A lot of people might yawn when you say this,” Blevins said, “but [the NYC program] really interferes with the moral fiber of the country.”
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