Giving users the right profile options

Should you give users the option to disclose their HIV status in their profile? Or the option to share that they’re taking PrEP, or have an undetectable viral load? Answering these questions often brings up ethical questions. Just like many other ethical considerations, this one requires balancing a concern about the potential to increase stigma against the right of both HIV-positive and HIV-negative users to make informed sexual health decisions, and the risk that HIV-positive people on the site may be discriminated against.

We recommend that your site give users the option to identify as HIV-positive, and also the opportunity to share other sexual health and HIV information (but only if they’re comfortable doing so).

Here’s why.

Having more information is better than having less when making choices about sexual health, and sites and apps can play an important part in helping users exchange more information easily. Despite many years of public health campaigns encouraging people to share HIV status and other health information with potential sex partners, many times these conversations just don’t take place in person. Sharing information online may be particularly helpful for users who may find it difficult to have conversations about sex and health in person. And starting these conversations online can do a lot to ease people into having these important conversations.

We recommend allowing users to share in their profile (if they wish):

  1. If they are HIV-positive or HIV-negative
  2. If they are HIV-positive and have an undetectable viral load
  3. If they are taking PrEP
  4. If they are “poz-friendly”
  5. If they use condoms

And, as always, we recommend giving the user an option to leave this field blank. While we want to encourage men to volunteer their HIV status and sexual health strategies, these should not be required.

Giving users the opportunity to disclose an HIV status, in addition to having an undetectable viral load, or being on PrEP, allows users to be empowered and visible about their HIV status and method of HIV prevention. Allowing users to self-identify as HIV-positive, “poz friendly,” or open to having sex with someone of any HIV status may also help reduce HIV stigma.

These options allow people to “sort” potential partners by their choice of prevention strategy, as well as HIV status. It is also easier for HIV-positive users to connect with other HIV-positive users, if that is what they prefer.

There is more and more research showing that people who are living with HIV, and who maintain an undetectable viral load, are extremely unlikely to transmit HIV to anyone else. Studies also show that men who take PrEP daily reduce their risk of HIV infection by 92-99%. Being able to share the use of these effective HIV biomedical strategies efficiently and easily will increase awareness and support a norm that favors these interventions, and reduce HIV stigma in the gay community.

We also recommend allowing users to share in their profile:

  1. Date of last HIV test
  2. Date of last STD test

Since rates of STDs are continually increasing in the gay community, it’s particularly important for sex partners to be able to share information about when they were last tested for infections. Including this information as a profile option would give users another opportunity to share critical health information easily and efficiently.

Finally, we recommend that sites and apps prompt users to get tested and to update their profile options every three months. People may start and stop taking PrEP, using condoms, or taking their HIV meds. They may not have gotten tested in a year. This would help ensure that users are sharing up-to-date information, and would also serve as a reminder for users to get tested on a regular basis and stay engaged in their health care.

Some sites already have implemented these and other ways to share health information. Adam4Adam, Daddyhunt, Grindr, Hornet, GROWLr, and BBRT already allow users to self-disclose an HIV status in a profile. SCRUFF allows users to select “safety practices” in their profile, and choose from three options: “condoms,” “PrEP,” and “Treatment as Prevention.” Mr X has an option for users to choose to “live stigma free,” with a way to specify that they’re “open to dating someone of any status.” These are all great examples of how sites are helping support men making the choice that’s right for them.