‘Opt-out’ testing for HIV and hep C is seen as coercive by many prisoners.
A new study among people entering prison in the USA suggests ‘opt-out’ testing approaches for HIV and hepatitis C virus (HCV) may need reconsideration.
New research into prisoner perspectives on HIV and hepatitis C (HCV) testing reveal that many have negative experiences around ‘opt-out’ testing, often fearing punitive consequences if they were to refuse to test.
Opt-out testing (where testing is given unless a person refuses) is currently practiced by many US correctional healthcare facilities on the basis that it is likely to improve testing rates in jail settings. However, this study is the first to explore prisoners’ experiences around opt-out testing and the factors that influence their decisions.
Both HIV and HCV are disproportionately prevalent among prisoners. Despite testing for HIV and HCV being widely available in US prisons many people leave jail having never tested for either virus, with testing for HCV particularly low.
Between September and November 2015, researchers conducted semi-structured interviews with 30 people newly detained in the Santa Clara County Jail, in Northern California.
The results showed that participants expressed a preference for opt-in HIV and HCV testing (where a person must actively consent to testing), as they felt this approach respected their right to choose whether or not to be tested.
Although most participants were aware they had the same right to refuse testing as outside of the criminal justice system, many worried about exercising this right for fear of negative consequences. Other participants equated the HIV and HCV tests with mandatory procedures such as giving a DNA swab and finger printing, suggesting they viewed HIV and HCV as being similarly mandatory.
The few participants who preferred the opt-out testing approach did so because they felt it was less likely to make people feel ‘singled out’ for testing.
Whether or not participants tested was influenced by the degree to which they felt coerced, their understanding of testing rights, as well as fear of being stigmatised if they were to test positive.
The participants’ decisions were also influenced by how much they knew about HIV and HCV. Most interviewees had a good understanding of HIV, were aware of prevention strategies such as condoms, and had previously tested for HIV. However, only two-thirds had heard of HCV, many misunderstood HCV risk, and only four had tested for HCV previously. This suggests providing information about HCV and integrating HIV and HCV testing for people entering jail could help increase the number of people testing for HCV.
The findings lead the study’s authors to call for people entering prison to be better informed of their testing rights. Without this, they argue, the feared negative consequences of refusing testing may be significant enough to equate to a form of coercion that undermines the notion of informed consent.
This study demonstrates that people in prison care about how HIV and HCV testing is offered and suggests the need for wider research to see how much this influences people’s decisions about whether to test.