Testing 1, 2, 3
Duane’s bill shaky on true informed consent
It took a mere six minutes on Tuesday for Sen. Tom Duane and the Senate health committee to vote to move forward a bill, S.3293, that is intended to increase access to HIV testing in New York State. Despite bipartisan support for the legislation, AIDS advocates are not united in favor of the bill’s overhaul of Article 27-f, the New York State law that ensures privacy in HIV testing.
Housing Works, the HIV Law Project and the New York Civil Liberties Union (NYCLU) are among those that worry that the new bill doesn’t go far enough in protecting the information of people who receive HIV tests and in ensuring that people who take HIV tests do so with written, informed consent.
Though the legislation is sponsored by Duane, it was written by the New York State Department of Health and is the same bill brought forward last year by Assembly Health Chair Richard Gottfried and former Senate Health Committee Chair Kemp Hannon. Last year the bill was announced as a “compromise bill” in response to far more dangerous legislation from Assemblywoman Nettie Mayersohn. Mayersohn wanted to allow doctors to test for HIV without telling patients. Both bills stalled last June.
“[The new bill] is a necessary and vital addition to the way that the health care system in New York State diagnoses, tests and treats individuals with HIV,” Duane said in a statement. “Making testing for HIV/AIDS as normal as taking one’s blood pressure will not only ensure that thousands of HIV-positive New Yorkers learn their status and get connected to care, it will also help to destigmatize the virus and slow its spread. It is equally important that this bill preserves written, informed consent for such testing; ensures critical information is provided to patients prior to HIV testing; and requires post-test counseling that reinforces prevention for those who test negative. Implementing this bill has been a priority for both myself and the State Department of Health and we now look ahead to securing its passage.”
“We want to take this issue out of the hands of legislators like Nettie Mayersohn,” said Tracie Gardner, state policy director at the Legal Action Center, which supports Duane’s legislation. “We appreciate that the Department of Health has weighed in with what works to ensure that more New Yorkers know their HIV status.”
Privacy concerns
While Duane’s bill is not as dangerous as Mayersohn’s legislation, it includes an “opt-out” measure for declining an HIV test. Opt-out testing does not provide the same level of informed consent as the current system. Rather than signing a consent form affirming their desire for an HIV test, patients indicate on a form that they do not want the test. Opt-out testing also means that information is more readily accessible to health departments.
“New York health care providers serve the highest concentration of persons at risk for or living with HIV in the nation. It is therefore important to remove unreasonable administrative and other burdens that compromise efforts to make HIV testing widely available and efficiently administered. However, the streamlining of HIV testing procedures need not – and should not – require abandoning the guarantee of informed consent to individuals regarding the nature and consequences of providing that consent,” reads the NYCLU opposition paper to this bill.
There is also the issue that health departments would be able see patients’ health records and use them to plan programs. Although the data would be aggregate and wouldn’t reveal names, this change is troubling to advocates. “Yes your name will be blinded, but if you’re in a small town where everyone knows everyone, this isn’t going to mean much,” said Housing Works Vice President of State Advocacy and Organizing terri smith-caronia. “This isn’t just about people living in New York City.”
Other opposition
While Housing Works is among the groups that worries the bill goes too far, Harlem United worries the bill doesn’t go far enough. The group bombarded Hannon with phone calls Tuesday morning asking that the bill remove the requirement of pre-and-post test counseling, in order to make the bill more routine.
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Posted on March 26, 2009 at 6:04 pm
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