- What evidence is available on risk of coercion in the context of HIV self-testing?
Key take-home messages
- While studies to date indicate that there are many benefits of HIV self-testing (also known as home-testing) and the risk of harm through coerced self-testing is minimal, the risk of coercion still exists (1).
- HIV home testing in high-income settings is seen as less problematic because it is assumed that individuals would be able to pay for the test, do the test, and experience the testing process in a context free from coercion or abuse (2, 3). In high-income settings, HIV self-testing may be less challenging because existing systems ensure proper regulation, access to health care, and protection from abuse (2–4).
- More research is needed on unintended consequences of self-testing in situations where testing is coercive and puts individuals at risk for violence if they refuse (5).
The issue and why it’s important
There are ethical and human rights concerns with respect to whether HIV self-testing (also known as home-testing or home-based HIV testing) could be used in coercive ways that are harmful to vulnerable people (6). Two areas of particular concern are abusive family members or employers, who could conceivably purchase HIV self-tests and bully their employees, family members or partners to test (6). The aim of this review is to investigate possible risks of coercion associated with HIV self-testing.
What we found
In the context of HIV self-testing, coercion is usually defined as being forced to test (7). This may be through physical means (with actual violence or threat of violence) or could involve threats to take away something if the person does not do the test (e.g., losing their job, breaking up a relationship, and not having sex) (7).
Alais and Venter (2014) provide their views on ethical, legal and human rights concerns raised by licensing HIV self-testing for private use and argue that HIV self-home tests are not likely to be harmful in a way that justifies restricting people’s access to them, and have plausible benefits (6). At the same time, it is important that reasonably robust protections are in place to protect against coerced testing, and that the information about linkage to treatment, and social and psychological support is available (6).
The 2016 World Health Organization (WHO) Guidelines on HIV Self-Testing state that “coerced or mandatory testing is never appropriate, whether that coercion comes from a health-care provider or from a partner, family member, or any other person” (1). The guidelines emphasize that although reported misuse and social harm are rare, efforts to prevent, monitor and further mitigate related risks are essential (1). While evidence from studies to date indicate that there are many benefits and that the risk of harm is minimal, it remains true that coercion is possible (1).
Several studies have shown that some initial reports of “coercion” to test were rather “persuasion” or “encouragement” to test (1, 8–10). For example, in Malawi, in total, 288 of 10,017 study participants (2.9%) reported having been coerced (8), and it was primarily men who self-tested with their female partner who reported being coerced to test (8). The vast majority of those who reported coercion (94.4%) also said they would recommend HIV self-test to friends and family, and 92.2% said they were highly satisfied with HIV self-testing (1, 8).
Another article discussing arguments for and against HIV self-testing (Wood, et al. 2014) does not provide any examples or evidence of coercion related to HIV self testing (11).
A systematic review by Qin et al. (2018) states that there is a potential for coercion directly related to HIV self-testing (12), contrasting the interpretation of evidence from the WHO HIV Self-Testing Guidelines (1). This review states that further research on coercive testing is needed to better understand this potential harmful outcome (12). According to Qin et al. (2018) (12), this risk increased in the context of sex power imbalances in heterosexual couples (13). This finding is consistent with quantitative studies from heterosexual couples in Malawi (8) and men who have sex with men in China (14). Notably, China has rapidly scaled up HIV self-testing, partly driven by a thriving online self-test kit market (7).
An online study conducted among 1,312 Chinese men who have sex with men concluded that HIV self-testing may be associated with coercion (7). The relationship between coercion and HIV self-testing may be influenced by China’s relatively permissive regulatory environment, few formalized resources for self-testing, and underlying social contexts such as power imbalances (7).
Another Chinese online survey of 1,044 men who have sex with men, of which 222 self-tested, reported that 29 participants experienced pressure to test for HIV (15). There was a higher risk of pressured testing in men who had only used HIV self-testing compared to men who had never self-tested (adjusted odds ratio [AOR] 2.39) (15). However, this relationship was only significant among men with low education (AOR 5.88, 95% CI: 1.92–17.99) and not among men with high education (AOR 1.62, 95% CI: 0.85–3.10) (15).
No studies from high-income settings have been identified that explore coercive, pressured, or forced HIV self-testing. The CATIE 2014 summary on home-testing mentions the following in this regard: (5) “There is also some concern that HIV self-testing kits could potentially be used to test sex partners before sexual intercourse. This may lead, in certain circumstances, to situations where testing is coercive and puts individuals at risk for violence if they refuse. More research on this unintended consequence is needed” (5).
Arguments about HIV home-testing take on a particular meaning depending on whether they are being discussed in the context of high-income or resource-limited settings (2). HIV home-testing in high-income settings is seen as less problematic because it is assumed that individuals would be able to pay for the test, do the test, and experience the testing process in a context free from coercion or abuse (2, 3). It is also the position of some authors that HIV self-testing is less challenging in resource-rich settings because existing systems ensure proper regulation, access to health care, and protection from abuse (2–4).
Factors that may impact local applicability
No studies from high-income settings have been identified that explore coercive HIV self-testing. The body of the available evidence is based on data from settings that may not be applicable to Ontario’s and Canada’s health care or legal systems.
What we did
We searched Medline (including Epub Ahead of Print, In-Process & Other Non-Indexed Citations) using a combination of text terms HIV and (home test* or self test*) with text terms (forc* or pressur* or coerc*). Searches were conducted on September 12, 2019, without publication date or language restrictions. Google (grey literature) search using a combination of terms coercive, forced, pressure with HIV and self or home testing were also conducted.
- World Health Organization. Guidelines on HIV self-testing and partner notification: Supplement to consolidated guidelines on HIV testing services. 2016. Available from: https://apps.who.int/iris/bitstream/handle/10665/251655/9789241549868-eng.pdf?sequence=1 Accessed September 17, 2019.
- Gagnon M, French M, Hébert Y. The HIV self-testing debate: Where do we stand? BMC International Health and Human Rights. 2018;18(1):5.
- Wong V, Johnson C, Cowan E, Rosenthal M, Peeling R, Miralles M, et al. HIV self-testing in resource-limited settings: regulatory and policy considerations. AIDS and Behavior. 2014;18(4):415–21.
- Scott PA. Unsupervised self-testing as part public health screening for HIV in resource-poor environments: Some ethical considerations. AIDS and Behavior. 2014;18(4):438–44.
- CATIE. HIV home-based testing: Potential benefits and ongoing concerns. 2014. Available from: https://www.catie.ca/en/pif/spring-2014/hiv-home-based-testing-potential-benefits-and-ongoing-concerns Accessed September 17, 2019.
- Allais L, Venter F. The ethical, legal and human rights concerns raised by licensing HIV self-testing for private use. AIDS and Behavior. 2014;18(Suppl 4):S433–7.
- Ong JJ, Li H, Dan W, Fu H, Liu E, Ma W, et al. Coercion and HIV self-testing in men who have sex with men: Implementation data from a cross-sectional survey in China. Journal of Acquired Immune Deficiency Syndromes. 2018;77(2):e22–e5.
- Choko AT, MacPherson P, Webb EL, Willey BA, Feasy H, Sambakunsi R, et al. Uptake, accuracy, safety, and linkage into care over two years of promoting annual self-testing for HIV in Blantyre, Malawi: A community-based prospective study. PLoS Medicine. 2015;12(9):e1001873.
- Kumwenda MK, Johnson CC, Choko AT, Lora W, Sibande W, Sakala D, et al. Exploring social harms during distribution of HIV self-testing kits using mixed-methods approaches in Malawi. Journal of the International AIDS Society. 2019;22(Suppl 1):e25251.
- Lora W, Chipeta E, Desmond N, editors. Understanding coercion in the context of semi-supervised HIV self-testing in urban Blantyre, Malawi. 21st International AIDS Conference; 2016; Durban, South Africa.
- Wood BR, Ballenger C, Stekler JD. Arguments for and against HIV self-testing. HIV/AIDS (Auckland, NZ). 2014;6:117–26.
- Qin Y, Han L, Babbitt A, Walker JS, Liu F, Thirumurthy H, et al. Experiences using and organizing HIV self-testing. AIDS. 2018;32(3):371–81.
- Kumwenda M, Munthali A, Phiri M, Mwale D, Gutteberg T, MacPherson E, et al. Factors shaping initial decision-making to self-test amongst cohabiting couples in urban Blantyre, Malawi. AIDS and Behavior. 2014;18(4):396–404.
- Qin Y, Tang W, Nowacki A, Mollan K, Reifeis SA, Hudgens MG, et al. Benefits and potential harms of HIV self-testing among men who have sex with men in China: An implementation perspective. Sexually Transmitted Diseases. 2017;44(4):233–8.
- Ong JJ, Wu D, Huang W, Fu H, Desmond N, Ma W, et al. Pressured HIV testing “in the name of love”: A mixed methods analysis of pressured HIV testing among men who have sex with men in China. Journal of the International AIDS Society. 2018;21(3):e25098.
Rapid Response Service. The risk of coercion in the context of HIV self-testing. Toronto, ON: Ontario HIV Treatment Network; September 2019.