Ethical implications of HIV self-testing

Abstract

In April 2015, the first legally approved HIV self-testing kit went on sale in the UK-except Northern Ireland where they remain illegal. These tests allow individuals to test their HIV status and read the result in the privacy of their own home, much like a home pregnancy test. This paper explores the ethical implications of HIV self-testing. We conclude that there are no strong ethical objections to self-testing being made widely available in the UK. Pretest counselling for an HIV test is not an ethical necessity, and self-testing has the potential to increase early diagnosis of HIV infection and thus improve prognosis and reduce ongoing transmission. Self-testing kits might also empower people and promote autonomy by allowing people to dictate the terms on which they test their HIV status. We accept that there are some potential areas of concern. These include the possibility of user error with the tests, and the concern that individuals may not present to health services following a reactive result. False negatives have the potential to cause harm if the 'window period' is not understood, and false positives might produce psychological distress. There is, however, little evidence to suggest that self-testing kits will cause widespread harm, and we argue that the only way to properly evaluate whether they do cause significant harm is to carefully evaluate their use, now that they are available on the market.

Self-tests for influenza: an empirical ethics investigation

“…Threat of testing becoming mandatoryDanger of self-testing being made obligatory, either legally or through social pressure (e.g. during an epidemic) thereby infringing individuals’ right ‘not to know’ [14, 59]. Privacy breaches through theft of kitIndividuals’ right to privacy may be infringed through theft and/or misuse of the diagnostic kit [26].…”

“…Laboratory-independence also means such tests can often be conducted in diverse settings, most notably those with weak health service or laboratory infrastructure [13]. Self-tests might also enable individuals to manage their health proactively, allowing individuals to make lifestyle changes or seek medical interventions sooner that could improve prognosis and reduce harm or suffering, as well as decrease infectious disease transmission [14]. …”

“…With self-tests, risks are compounded by the increased likelihood of individuals failing to conduct the test properly, misunderstanding test results or misunderstanding the reported accuracy of those results [17, 18]. When tests are conducted at home, individuals are also less likely to have sufficient support structures in place, either pre- or post-diagnosis [14, 19, 20]. …”

“…In this, we bring together two related strands of research: i), a growing bioethical literature on the ethics of diagnostic technologies, and self-testing in particular [14, 17, 25, 26]; and ii), a sociological literature that has sought to understand individuals’ motivation for and experience of self-testing [18, 27, 28]. …”

Scale‐up of HIV self‐testing

“…Ending HIV transmission in Europe is possible, but requires increased testing efforts and ensured linkage to care pathways across different settings. Evidence supports the implementation and scale-up of the ethical, effective, acceptable, and evidence-based HIV self-testing (HIVST) approach [1,2]. A high acceptability of HIVST and selfsampling has been found among key populations largely because it helps overcome self-identified barriers to HIV testing [3].…”