In 2005, the The New York City Department of Health and Mental Hygiene
("Department") proposed an aggressive plan to begin electronic
collection and surveillance of the hemoglobin A1C levels of all New
York City residents with diabetes mellitus in an effort to address
the city's growing epidemic of type 2 diabetes. In its notice of the
public hearing on its proposed plan, the Department stated that "This
epidemic condition [diabetes] requires similar or greater urgency
[to the TB effort launched in the 1800's] in public health response
to that traditionally accorded to infectious disease monitoring and
control."
Although the Department is required to prevent and control communicable
diseases, chronic illnesses such as diabetes present some truly unique
features that render them fundamentally different from traditional
efforts aimed at communicable diseases. Most notable is the fact that
diabetes "is not a single disease, but a cluster of disorders
that share certain common features, the most characteristic of which
is elevated levels of the sugar glucose in the blood." Unfortunately,
not all forms of diabetes are even preventable, yet the Department's
justification for its aggressive actions are based heavily on the
idea that the city will actually be preventing diabetes, which is
physiologically impossible.
Also, because diabetes is not communicable, it presents the city with
a fundamentally different type of threat which cannot be addressed
using approaches developed in the 1800's. For example, the courts
have generally ruled that although a patient's right to privacy in
their medical information and records is not absolute, "[t]he
court must determine whether the societal interest in disclosure outweighs
the privacy interest involved. To avoid a constitutional violation,
the government must show a compelling state interest in breaching
that privacy." [Doe v. Borough of Barrington, 729 F. Supp. 376,
385 (1990)].
Ironically,
the Department (and the city) had the opportunity to avoid having its
diabetes surveillance program decided by a court of law, but instead
selected an option that disregarded patients' rights to retain control
of their test results, not disclosing that test results are being seized
by the NYC Department of Health and Mental Hygiene, and not providing
patients with a means to have opt out of the registry (although they
can opt out of receiving communications from the Health Department).
By providing patients with an option to be excluded from the registry
on the laboratory requisition forms, this would provide "informed
patient consent" to participation in this diabetes surveillance
program. Unfortunately, the Department chose to disregard these ethical
concerns and now risks having its diabetes surveillance program decided
in a court of law.
Please join
us in asking the Mayor Michael Bloomberg, Health Commissioner Thomas
R. Frieden, Director of Diabetes Prevention and Control Program Diana
K. Berger, and the New York City Council Members to add provisions to
the plan which enable patients to "opt out" of having their
medical data related to diabetes management seized by the Department
of Health and Mental Hygiene. We encourage all New Yorkers concerned
about medical privacy and the right to infomed patient consent to sign
this petition. (Those who live in other cities, states and countries
may lend their support by signing, although the petition itself will
focus on residents of The City of New York).
