The tension between the need to maintain control over personal
information and the moral and ethical obligation to warn others of the potential
for HIV-related risk is at the core of the debate about the use of criminal law
to encourage disclosure or punish non-disclosure of one’s HIV-positive status.
Many HIV-positive
individuals find it desirable to share information about their HIV status with
their partners. The circumstances and timing often vary, however. Whilst some
people are able to tell their sexual partners immediately, others may hold back
because of concerns about potential negative consequences.2,3,4 Some
HIV-positive people may be reluctant to disclose whilst trust is still
developing in relatively new relationships.2,3,4
I
just felt kind of dirty, I guess, by being rejected, and knowing that
that'll
probably happen again has turned me off [disclosing my HIV-positive
status]
more. (Gay man, Canada,
2008)3
You
don’t want your status known, right? So you tell the person you’re gonna
have
sex with [that you have HIV]. They don’t want to do it then, right?
...but then
they tell everybody else ‘He’s got HIV.’ You say ‘Damn, I didn’t want
everybody
to know. I was just trying to tell her because I
wanted to have some sex and now she went and exposed my status. (Heterosexual
man, Michigan,
United States,
2009)2
I got
married in 2004 and my husband started giving me STDs [sexually
transmitted
diseases]…He goes out with women. When I ask for a condom, or go to
the
clinic to get treatment, he starts beating me. In January 2006 I went
for VCT
[voluntary counseling and testing]. He was refusing [to receive an HIV
test].
The results came positive. From the time I got the results, he started
beating
me up. After two months he chased me away. He beat me everywhere. When I
was
four months pregnant he beat me until the placenta came out. I had to go
to the
Victim Support Unit [a special unit of the Zambian police that addresses
abuses against women and children]. (Mercy Z, Zambia,
2007)5
It's
so easy to lose everything you’ve got because you disclose your
information and
then it goes like a domino ...and then what you gonna do? Can’t get a
job,
can’t get a girlfriend, can’t do nothing. (Heterosexual man,
Michigan,
United States,
2009)2
In other cases, discussing
HIV in the context of casual, non-formalised or short-term relationships may
seem out of step with the behavioural norms that govern those encounters.2[ref][ref]
You can't
just meet someone in a bar and then when you're going to have sex with them,
say 'By the way I'm HIV-positive'. But you know if you're going to see him
more, then you have to be honest and say. But there isn't a rule about how long
after you've met someone that you have to tell them. (Gay man, United Kingdom)4
Unless they totally understand the situation and are totally
educated on the problem, both totally educated on the do’s and don’ts of this
problem, they’ll say ‘no’ [to sexual activity] and then they’ll go... ‘He’s got
AIDS over here.’ Then you gotta leave the state. (Man, Michigan,
United States,
2009)2
An HIV-positive person may be misperceived as HIV-negative by
a sexual partner simply because the partner wrongly interpreted the
HIV-positive person’s silence on the matter.4 It is also
conceivable that an HIV-positive person may intentionally lead a sexual partner
to believe that he or she is HIV-negative. Sometimes this is accompanied by an intention to
‘correct the record’ at a later date when trust and emotional connection have
developed.4 For many people HIV disclosure is not an event
or a one-time conversation. It is a process that takes time and constant
communication.
In addition, some HIV-positive people try to disclose their
status to sexual partners in ways that do not include direct and open
discussion of HIV. Although this coded or implicit disclosure may lead to
miscommunication, this may not be evident to either partner at the time of HIV-related
risk-taking.
I’d been openly taking my
pills in front of this guy I’d been seeing for weeks. I assumed he knew my HIV
status. When I said I was off to my HIV doctor that afternoon it suddenly
became apparent that this was not the case. He thought it was not polite to ask
what the pills were for... and hadn’t even thought they might be for HIV. (Gay man, Australia,
2005)6
In a 2003 book
examining disclosure amongst a wide range of HIV-positive people in the United States,
Klitzman and Bayer include the example of an HIV-positive man who told his
HIV-negative female partner that he expected to have a shorter lifespan,
without explaining why. “In retrospect [the female partner] said she understood
he was referring to the fact that he had HIV, but there could be lots of
reasons someone would make a statement like that,” note the authors.
“Indecipherable coded communication is not communication at all.”7
In a view shared
by many commentators,8,9,10,11,3,12 participants
at the UNAIDS technical consultation on the application of the criminal
law to potential or actual HIV exposure or transmission called attention to the potential difficulties that people with HIV may
face when considering disclosure of their HIV-positive status. “In particular,
people living with HIV may choose not to disclose for fear of rejection,
stigma, discrimination, or violence; loss of privacy and confidentiality; or
the desire to protect the feelings of others.”13
For women in
particular, confidentiality of medical information, including HIV status, is
essential to the protection of their human rights, because women may find
themselves abandoned, subject to domestic violence, or ostracised if their
domestic partners, families or communities discover that they are HIV-positive.14,9
Research from Africa
indicates that the fear of disclosure of HIV status is one of the main barriers
to women’s use of voluntary counselling and testing services, and that this
fear “reflect[s] the unequal and limited power that many women have to control
their risk for infection.”15 Further, in
some cases – particularly for women – fear of violence may be a reason for not
disclosing their HIV status.16
Galletly and
Pinkerton point out that what some prosecutors in criminal cases may portray as
“a conscious effort to deceive” may instead simply be behaviour that has
resulted from “denial, lack of self-efficacy to disclose, or concerns over
potential repercussions of disclosure.”8
Worth, Patton and
Goldstein further note that “[t]he law may not distinguish between acts engaged
in through love or simple lust, but the reasons for disclosing and not
disclosing, or waiting to disclose, HIV-positive status would seem to change
almost completely based on the forms of intimacy and the relational systems
that structure them. Thus, the crucial question of motive is confounded by
mixing charges against casual and long-term partners.”
Participants at
the UNAIDS technical consultation noted that although all people have an
ethical obligation not to cause harm, “a blanket rule of mandatory disclosure
of HIV infection would fall most heavily upon those whose circumstances make
disclosure difficult or impossible (which would likely be women
disproportionately).”17 Consequently, there was consensus that "where
there are reasonable fears of violence or abuse related to HIV disclosure or
use of HIV prevention methods, the law must not expose people to criminal
liability under these conditions. Participants emphasised that those
responsible for developing policy and law must take barriers to disclosure (and
to taking precautions) into account and develop strategies for overcoming
them.”17
Since HIV is a
highly stigmatised condition, WHO and UNAIDS support a human rights approach by
encouraging “beneficial disclosure” of
HIV status. This approach emphasises that individuals should have
control over if, how and when to tell others about their HIV-positive status.18 “Beneficial
disclosure, they explain, “is disclosure that is voluntary; respects the
autonomy and dignity of the affected individuals; maintains confidentiality as
appropriate; leads to beneficial results for the individual, his/her sexual and
drug-injecting partners, and family; leads to greater openness in the community
about HIV/AIDS; and meets ethical imperatives so as to maximize good for both
the uninfected and the infected."18