By Abe Lebovic and Dakin Campbell

When New York City diabetes sufferers visit city clinics and hospitals to get blood sugar measurements taken, the results and their identifying information can now be sent directly to city health officials. The city-wide diabetes registry marks the first time in the nation’s history that any government body will monitor and track a chronic disease.

Health-care professionals have expressed conflicting views about the program, which has raised the ire of privacy advocates.

At issue is whether the city should obtain consent from the patient, whether the government has a right to the information in the first place and whether the city is responsible enough to maintain privacy.

“A key part of health freedom is the privacy to have a confidential relationship with one’s doctor,” said Sue Blevins, founder and president of the Institute for Health Freedom. “People value that privacy.”

The form that privacy takes was sketched in greater detail with the passing of the Health Insurance Portability and Accountability Act of 1996. HIPAA lays out rules and regulations for health care workers in how to deal with patients’ information. The law also contains exemptions where information can be shared and in some cases without consent from the patient.

The New York City program does not require consent either; all test scores from city labs with electronic reporting capabilities are sent for compiling to one main database. As it is, only about 40 labs are now reporting, but with each passing month more labs will be brought on board, said Diana Berger, the head of the diabetes prevention and control program at the department of health and mental hygiene. About 130 of about 400 labs are equipped for electronic data sharing. Berger, an early architect for the program, believes that the public health benefits far outweigh the privacy issues. She said the program will allow the city health department to study the incidence of the disease and report back to city health-care workers and patients on effective treatments.

Photo: Dakin Campbell

These results will be used to better focus the city's resources to treat the disease.

“About 75 percent of the mortality and morbidity of this country is related to chronic diseases,” Berger said. “As our commissioner says ‘how could we not do something from a large public health effort to tackle this epidemic,’ and [diabetes] really is an epidemic, just like the plaque or TB.”

And the government does have a history of intervening in cases involving communicable diseases, such as alerting partners of those with syphilis and placing those with tuberculosis under quarantine. Opponents of the newest program do not challenge the severity of the chronic disease, but instead argue with the city’s approach.

Scott Strumello, a diabetes sufferer and blogger on diabetes issues, worries that patients’ information may fall into the wrong hands. Strumello says he is concerned that this program will make his health information more vulnerable, and privacy experts say the same thing about a parallel plan for a national healthcare database now in the works.

Both may make private health information easier to obtain by marketers, insurance providers, friends or co-workers.

Strumello has started a Web site, www.stopnyca1ctracking.org, to inform city diabetes sufferers of their options. He has filed a Freedom of Information Law request with the state seeking lists of all city labs that do, and do not, electronically report to the city health department and he will post them to his site.

For her part, Berger thinks that critics of the program are exaggerating its threat to privacy.

“The Department of Health," she said, "has over a hundred year history of collecting and protecting sensitive information."