EATG » Grindr sharing the HIV status and other personal information of their users with third parties without their informed consent is unacceptable

Grindr sharing the HIV status and other personal information of their users with third parties without their informed consent is unacceptable

The EATG is disturbed by the news, reported by BuzzFeed News, about Grindr sharing the HIV status information of their users with two third companies, Apptimize and Localytics. Such actions are a violation of the rights of people living with HIV (PLHIV) and serve to reinforce existing stigma and prejudice.

On April 2, BuzzFeed news reported that Grindr, a popular gay mobile application with more than 3.8 million daily users across the world, has been providing the HIV statuses of its users´ to two other companies. This sensitive medical information was shared together with general data published by users within their profiles such as their ethnicity, relationship status, gender identity, age, e-mail address and GPS location.

Each Grindr user has an option to fill in the “HIV status” field on their profile, which includes a variety of statuses – Negative; Negative, on PrEP; Positive; Positive, Undetectable, including a recently added testing reminder feature. There is also a link to a Sexual Health FAQ, including information about HIV, PrEP, testing and other frequently asked questions.

Many users of Grindr are comfortable enough to share this information on their profiles and this has led to a normalisation of men being open with their HIV status. This doesn’t mean that they want their personal information to be shared beyond other Grindr users, with third parties.

As a popular application amongst gay men and other MSM, many of its users consider it as a safe space, where they can connect with other people and discover their world. After the revelation of the story about Grindr sharing personal information, including HIV status, the perception of the application as a safe space is further put into question by its users. Several gay media and organisations have already expressed their concern and called Grindr to stop sharing the information with third parties immediately, some of them also called the community to stop using Grindr.

After the information became public, Grindr responded immediately, saying they would stop sharing HIV status information with other companies. However, the harm had been already done and the reaction from the company continues to remain inadequate as they didn’t seem to take accountability for the damage they did.

The EATG believes that applications such as Grindr can play a significant role in reducing the stigma faced by people living with HIV/AIDS and other vulnerable communities, by addressing the effectiveness of new prevention strategies such as TasP, PrEP as well as the importance of regular HIV and STI testing.

Therefore, the EATG strongly calls on all digital platforms that use data of people from our communities to adhere to the EU General Data Protection Regulation and to operate with adequate responsibility, especially while dealing with personal information from a community that is already burdened by various forms of stigma.

The EATG expects applications such as Grindr to do everything possible to create safe spaces for their users, including PLHIV, and not to profit from unsolicited sharing of their personal data.

Read and download the statement here.

News categories: Human rights, Advocacy