Balancing Human Rights And HIV Testing

There's a growing movement to declare access to basic healthcare as a fundamental human right. And there's a lot to commend in this push. But great ideas and good intentions don't always guarantee desired results on the ground, as I learned in my recent trip to South Africa.

A case in point: the clash between those who champion voluntary counselling and testing (VCT) for HIV with the those who argue for the so-called opt-out model.

VCT grew out of the early days of the AIDS epidemic when people's legal rights were getting trampled right and left in housing, on the job, in schools and in clinics and hospitals. Back when there was no treatment for HIV, when AIDS was a new and terrifying scourge, it made a lot of sense to make sure that everyone understood before getting tested for HIV, what the test involved, what it meant to be HIV-positive, who could use that information and what your legal rights were.

But now that we have lived with AIDS for 25 years, now that there are treatments (albeit no cure or vaccine), now that anti-discrimination laws are stronger, voluntary counselling and testing may actually be doing more harm than good.

Or at least that's the feeling of a couple of doctors I spoke with in South Africa.

By making HIV testing such a big deal in that country, VCT has actually increased stigmatization, in their view, particularly in rural areas where all your neighbors go to the same clinic and know which chairs and which doors are designated for HIV testing and counselling. And in fact, studies show that under VCT programs fewer South Africans who actually are HIV positive opt for testing.

As an alternative, a few South African healthcare workers are trying the opt-out model for HIV testing. Patients still get counselled about HIV but it's part of a broader panel of tests--for example, prenatal tests that look for Rh factor, diabetes and high blood pressure. And instead of actively making a decision to be tested (call it opt-in), the active decision after the counselling is not to be tested. In other words, if you do nothing, you'll be tested. But your rights are preserved by an "opt-out" option.

The opt-out approach has worked in Botswana and is being championed by the Centers for Disease Control for use in the U.S. It's gotten some pushback from those who were trained in and have championed voluntary counselling and testing. There is a legitimate human rights concern here--AIDS discrimination is still rampant, particularly in areas of extreme poverty. But being inflexible about how human rights are expressed or sticking with the first human rights response for too long can also lead to harmful and even fatal delays in care.