Privacy Unraveling as a Threat to Disclosure Choice Around Sensitive Information in Online Social Environments.

Mark Warner
Published in
6 min readApr 4, 2019


This blog summarises a CHI’19 paper, authored by Mark Warner, Juan F. Maestre, Jo Gibbs, Chia-Fang Chung, and Ann Blandford, which is available here. It will be presented at the ACM Conference on Computer-Human Interaction (CHI’19) on Monday 7th May 2019 at 14:00 in the session on Privacy and Sensitive Personal Data in room Dochart 2.

What happens when a social technology does not meet the needs of a certain group of users? Are these users able to reshape these technologies without the involvement of developers?

In conducting research into privacy and disclosure behaviours around HIV status information in geolocation-based sex-social apps (e.g., Grindr, Scruff), we found participants changing the meaning (signals) around specific elements of the user interface (UI). We refer to this way of appropriating social technologies as ‘signal appropriation’. We conducted interviews with 14 HIV positive and 14 HIV negative men who have sex with men (MSM) who were living in the UK. We report findings from these interviews in an upcoming paper (link) to be presented at CHI 2019.

Does non-disclosure = concealing?

At CSCW 2018, we presented a research study based on an analysis of online discussion boards (The full paper can be found here, and the blog summarising the research can be found here) in which we explored the introduction of HIV status information into these sex-social apps. We identified a concern related to a social effect known as “privacy unravelling” [4]. This effect can cause stigmatising signals to develop around users who choose not to disclose their HIV status information. For example, because participants thought revealing an HIV positive status was more “costly” than revealing a negative status, those not disclosing were concerned that their lack of disclosure would be perceived as them concealing an HIV positive status. In and of itself, privacy unraveling is a form of signal appropriation. The non-disclosure option was designed to allow users to maintain privacy and control over their HIV status, yet it could inadvertently be used to “signal” or infer a person’s likely HIV status.

Appropriating technologies to mitigate stigma and connect with others

In our latest study being presented at CHI’19, we found further support for these privacy unraveling concerns. However, we also identified the effect being used to subtly disclose an HIV positive status whilst maintaining plausible deniability (i.e., disclosing through not disclosing). For some people living with HIV, disclosing can be very difficult. The location-aware nature of many of these apps can lead to people from different spheres of life crossing-over. For example, a number of participants reported seeing, or being messaged by, colleagues through their sex-social app whilst at work. This can make disclosing a sensitive HIV status ever more challenging for people living with HIV due to the stigma around the condition. However, disclosure can also be used to help reduce the risk of being stigmatised. Some men use public disclosure as a way of finding other HIV positive men to connect with, describing the increased simplicity that comes with meeting other HIV positive men, as it neutralised the significance of their own status. Whilst privacy unravelling may limit the choice that users have around the disclosure of their status, the signal appropriation of these apps which exploit the effects of privacy unraveling can create a subtle form of disclosure that may help those straddling the line between being private and public.

How can design carefully account for disclosure of sensitive information?

So, from the perspective of technology designers, how do we deal with the potential social effects of privacy unraveling that may reduce disclosure choice for users, whilst at the same time, provide a subtle form of disclosure for others? Below we discuss a few of the design implications from our work.

Reduction of stigma around HIV

As a long-term goal, we suggest taking a serious look at the broader social issue around HIV within these sex-social environments. Our work highlights the need to reduce the stigma that HIV still attracts and suggests a form of community signalling to help reduce this stigma. Community signalling methods within this context, such as community “pledges”, are a potential way to address the stigma [3]. For instance, users can pledge to “live stigma free”. Future research should continue examining the short- and long-term effectiveness of these types of signals. Educating and raising awareness amongst these users may also help to tackle stigma. We also propose embedding educational functionality into apps that are used every day by people in at-risk communities. These functions could provide people living with HIV the means to share easy-to-understand, consistent educational information about their condition to others.

Ambiguity as a design resource around sensitive information disclosure

Finally, designers developing any system that provides users with an option to disclose sensitive personal information should consider the implications of binary style disclosure fields, and their impact on privacy and disclosure choice. Ambiguity could be used as a resource around these disclosure fields to help limit the effects of privacy unraveling and promote a more socially cultivated signaling system. Unlike the Grindr HIV disclosure interface shown in Fig.1 (left) which asks users to explicitly state their HIV status, Scruff shown in Fig.1 (right) asks what users’ safer sex practices are, allowing users to select multiple options.

Fig.1 Cropped screenshots of the HIV disclosure fields in Grindr (left), and Scruff (right)

One of the options provided is ‘Treatment as Prevention’, which refers to HIV prevention through effective treatment of HIV. People living with HIV who are on effective treatment are often able to suppress the levels of the HIV virus in their system to an undetectable level, making risk of transmission through even condomless sex effectively zero [1,2]. Whilst disclosing ‘Treatment as Prevention’ as a safer sex option could signal to others the user is HIV positive, it is appropriately ambiguous that it could also signal that the user is HIV negative and open to having relations with someone who is on ‘Treatment as Prevention’.

Our research suggests that ‘signaling systems’ designed around sensitive information disclosures can be shaped by its users through a process of cultural cultivation. Designers of these system should carefully evaluate how these systems are being appropriated by users in this way and consider making adjustments if they are disadvantaging certain groups or having a broader negative impact. We are currently conducting further empirical research which explores the effects of privacy unraveling around these sensitive disclosure fields to better understand the role design may play in reducing its effects.

To read more, please download our paper from here. If you would like to share your thoughts, please contact Mark Warner at mark.warner(at)ucl(dot) ac(dot)uk.

This work has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No 675730.

1. Alison J. Rodger, Valentina Cambiano, Tina Bruun, et al. 2016. Sexual Activity Without Condoms and Risk of HIV Transmission in Serodifferent Couples When the HIV-Positive Partner Is Using Suppressive Antiretroviral Therapy. Jama 316, 2: 171.

2. Alison Rodger, Valentina Cambiano, Tina Bruun, et al. 2018. HIV transmission risk through condomless sex in gay couples with suppressive ART: The PARTNER2 Study extended results in gay men.

3. Karen Levy and Solon Barocas. 2017. Designing against discrimination in online markets. Berkeley Technology Law Journal 32.

4. Peppet, S. R. (2011). Unraveling privacy: The personal prospectus and the threat of a full-disclosure future. Nw. UL Rev., 105, 1153.