HIV: To disclose or not to disclose

One of the issues that often crops up in debate about HIV and people’s rights is confidentiality. Medical practice has always upheld the notion that someone’s health is a private matter. The physician should not divulge personal details. The Hippocratic Oath taken by doctors encompasses a set of ethical principles that includes the following: “All that may come to my knowledge in the exercise of my profession, which ought not to be spread abroad, I will keep secret and will never reveal.”

On the other side of the public health equation there is the need for reliable knowledge about the scale of a disease if it is to be professionally treated on a national scale. The health authorities need accurate facts and figures to set up national health programmes for treatment and care. In cases of epidemics, it is particularly important to know how many people are carrying a disease if the response is to be commensurate with the problem.

The disclosure/confidentiality conundrum is not new to the medical profession. Countries everywhere have built up their own traditions of law and practice in the field. But with HIV and AIDS, the dilemmas seem to be particularly acute. They seem to come with a sting in their tail.

One of the reasons for this is the intrusion of criminal law into the already complex HIV disclosure scenario. This has come about as a result of court cases in which someone is accused of willfully transmitting the virus to a partner. These cases, where a person recklessly inflicts his or her pain on somebody else, frequently giving the victim a death sentence by so doing, are fraught with suffering, and with legal difficulties as well.

Causing bodily harm to others is an offence that is normally liable to prosecution under existing criminal law. However, a number of countries, and their parliaments, not content with the law already on the statute books, have passed specific AIDSrelated criminal legislation.

What, you might ask, is the harm in that? Deliberately putting other peoples’ lives in danger testifies to such gross disrespect for one’s fellow human being that punitive law is surely an appropriate response. Not so, say the human rights lawyers. Not in this case anyway. For a start, there is a problem with the burden of proof.

A typical scenario might run as follows: a man from a remote part of Africa or Asia travels to the city - Johannesburg, Bangkok, wherever, to find work. He stays in the city, returning home occasionally on leave to see his family. He may have good reason to suspect he is carrying the HIV virus, but has never been tested. In actual fact, he is a carrier and he transmits the virus to his spouse. For the spouse to have any recourse under these punitive laws, the perpetrator must be proven to have known that he was carrying the virus at the moment of transmission. If the wife wishes to sue the errant husband for giving her a deadly virus for which there is no available treatment (antiretrovirals being either unobtainable or too costly in the village), she must prove her husband knew he was infected. He will be likely to deny any such knowledge, and may well go on to accuse his wife of picking up the virus elsewhere, and just for good measure, beat her up for her fictitious infidelity. And, in some extreme cases, kill her.

What is more, knowing the terms of the new HIV law, promiscuous men or women who suspect they may have HIV are far less likely to turn up at the nearest testing centre to find out for sure. Their legal position is much safer if their status is unknown, to them or anyone else. In other words, HIV-specific criminal law provides a formidable disincentive to voluntary testing. And a formidable barrier to the epidemiologist looking for reliable data on prevalence.

More generally, homophobic law is having the same kind of result. Homosexuality is being outlawed in an increasing number of countries. In one East African country, a law is before parliament that makes homosexuality an offence punishable with long prison terms. Not only that, the bill includes a provision that could lead to the imprisonment for up to three years of anyone who fails to report within 24 hours the identities of everyone they know who is lesbian or gay, or who supports human rights for people who are.

The bill is a reflection of the atmosphere of fear that reigns in countries where the epidemic has cut down large swathes of the population. It is a response to a kind of surrender, a loss of hope that is all too understandable. And its certain effect, like similar laws elsewhere, will be to drive people deeper into hiding. Already stigmatized, these groups will become even more vulnerable to the ugliest forms of discrimination.

Caught between the hammer and the anvil, the pressure of public opinion in the constituency and the duty to respect the human rights of all, the legislator is not in an enviable position.

At the IPU’s Global meeting on HIV/ AIDS at the end of 2007, parliamentarians, picking up on the World AIDS Day theme of leadership, stated their intention to stand up and be counted. The 2009 theme is human rights. Their leadership is more necessary than ever.

JJ