Tracy Welsh is the executive director of the HIV Law Project, a New York City group founded in 1989 to provide legal and advocacy services to low-income HIV-positive residents. The organization has handled 20,000 individual cases. The group supports wider testing for HIV, but it believes that some of the city's proposals infringe on privacy rights. We discussed the delicate balance between personal privacy and public health.
Health officials in several cities, including New York, are pushing to make HIV testing more routine and more widespread. Let's start with where you guys agree.
We want HIV testing in the widest way possible. That doesn't just include medical centers. It also includes, for example, homeless shelters. Our approach has really been to push for widespread voluntary testing.
Health officials in New York are advocating a change in state law that would allow HIV tests to be given without the need for written consent from the patient. They say that would help make testing more routine. But you oppose that plan?
The question I come back to there is, Why? What is the rationale? What is the problem we're trying to solve? New York City has about the same rate of testing as other parts of the country. There's been no evidence to suggest that removing the written-consent requirement will greatly change that. If you want to take away people's rights and test them without them knowing, then, yes, you'll test a lot more people.
But if we're talking about really improving the testing system, I would argue that it's not the testing itself that's the problem. The problem is that doctors don't want to go through the process to make it routine. They're still making decisions based on categorial risk assessment, determining whether you fit within a predetermined population [such as gay people or minorities or drug users] before offering the test. The [push for widespread testing] is a nice policy. But if doctors aren't working to implement than and to make it available to their patients, it's not going to have an impact.
Do you think that removing the written-consent requirement could make HIV testing too routine?
If we're going to be asking people to take the test, we have to think about what happens when they test positive. Yes, the stigma of being HIV-positive has decreased. People don't lose their jobs like they used to. But there still is a stigma. We still have to protect the rights of the people who are going to take the test.
My concern is that, now that HIV/AIDS is affecting more disenfranchised people, like women, the poor, and people of color, there seems to be less concern about their privacy rights. When the epidemic was predominantly white and predominantly male, those rights and those protections were somehow important to us. But somehow now that's not the case. People on the ground aren't quite buying it.
So you believe that doing away with written consent has too many anti-privacy implications?
Yes. The answer is not to get rid of written consent. The answer is that we've got to get medical providers more actively involved in offering the test in the first place.