Research Video

What We Disclose When We Choose Not To Disclose - Privacy Unraveling Around Explicit HIV Disclosure Fields

For many gay and bisexual men, mobile dating or “hook-up” apps are a regular and important part of their lives. Many of these apps now ask users for HIV status information to create a more open dialogue around sexual health, to reduce the spread of the virus, and to help fight HIV related stigma. Yet, if a user wants to keep their HIV status private from other app users, this can be more challenging than one might first imagine. While most apps provide users with the choice to keep their status undisclosed with some form of “prefer not to say” option, our recent study which we describe in a paper being presented at CSCW 2018, finds privacy may “unravel” around users who choose this non-disclosure option, which could limit disclosure choice.

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Grindr’s Privacy Failing

On Monday, the news website Buzzfeed released a story revealing Grindr , the gay hookup app, was sharing personally identifiable information, including HIV status information with third parties. Grindr is one of the most popular gay hookup apps on the market, with over 3.6 million daily active users. Buzzfeed learned that Grindr was sharing certain pieces of user information with two companies, Apptimize and Localytics, companies that operate in the background to help Grindr optimize their user experience. (Note: In a statement, Grindr have said they will no longer be sharing HIV status information with third parties).

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Unknown Prisoner?

In the final weekend of my two month long PhD secondment in Germany, I visited the Dachau concentration camp, just north of Munich. It was the first time I’d visited a memorial site of this kind, so was an especially moving experience. Dechau was a uniquely notorious camp, used as a “model” for the other camps that came after, and was the only one to existed throughout the entire war.

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Bystander Effect > Disclosure?

As part of my literature review, I have identified a number of papers examining the attitudes and preferences to sharing patient data for secondary use purposes. One of the themes of these studies is a high number of respondents reporting their support for the use of data in medical research, while a much lower number reporting a willingness to share their own data. In this blog post, I suggest bystander intervention, a social-psychology theory to explain these somewhat paradoxical views.

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The Unintended Consequences of “People You May Know”

Going to see a psychiatrist can be a daunting prospect for many due to the often-intimate information being disclosed. The doctor-patient confidentiality regulations are designed to provide an environment in which the patient feels comfortable to disclose and discuss very sensitive information without fear of negative consequences. While the intimate information disclosed during a session must remain confidential, so too should the attendance itself.

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Welcome to my privacy and behaviour research website

Welcome to my official PhD research website. I will be keeping this website up-to-date with findings from my own research, discussion of other research in related areas, as well as posting on news articles and current affairs that relate to my work.

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