I want to make sex better.
That’s what gets me up in the morning. Part of making sex better is doing what I can to eradicate sexually transmitted diseases (STDs). I particularly focus on chlamydia and gonorrhea because I consider these really stupid infections. It’s crazy that they still exist. We know how to prevent them (condoms) and how to diagnose them (very specific and sensitive tests). We can completely cure these STDs. So then, why do these diseases infect over 3 million new Americans every year, half of whom are ages 15-25?
One of the reasons these diseases are still around is because Americans are really bad about talking about sex, and especially bad about talking about STDs. There are very few health problems that are more stigmatized. Often, when we get diagnosed, we don’t want anyone to know. This includes our sex partners. This stigma is part of the reason why when people get diagnosed they tend to only notify 23% of their partners.
Why should we care about partner notification? It is important because it is one of the most effective and efficient ways to curb the spread of STDs. Partners of people who have been diagnosed with STDs are significantly more likely than others to be infected and even more likely than people that exhibit symptoms. If those partners get tested, treated, and notify their own partners, we can track along the lines of the infected sexual network, spreading testing and treatment where disease went before. Simply put, if everyone notified all of their partners, we could eradicate curable STDs from a lot of communities.
That’s why we built So They Can Know, a free website designed to help people who have been diagnosed with an STD to notify their partners. We help people understand which of their partners they need to tell and provide tips, scripts and videos to help them figure out how to tell them. For people who just aren’t going to have that conversation, we allow them to send anonymous emails to their partners to let them know they need to get tested. These emails let partners know what STD they need to get tested for, how it’s spread, how likely they are to have symptoms, whether they can get cured, and where to get tested near them.
Developing and maintaining a website like this is a constant ethical dilemma. Getting an anonymous email telling you that you might have an STD is terrible and can ruin your day, week, or month. That’s why before launching the site, we surveyed over 300 young adults on their acceptability of this service. Over 90% of respondents said they’d rather get an anonymous email than not be told at all, and over 95% said they thought a website like So They Can Know should exist. So, it was developed and launched.
We know that our emails cause a lot of anxiety, and so we also make sure to do everything we can to help notified individuals resolve that anxiety. We try to help them determine whether or not they’re at risk by clearly stating how the STD is spread. We only send anonymous emails for STDs that can be tested for and/or cured. A lot of people would like to use our service to notify partners for a STD like Herpes, however we don’t feel comfortable going there quite yet. These are not STDs you can be easily tested for and they’re not curable.
The other ethical dilemma we face is fear of misuse- people using our website to play a (not very funny) joke on their friends or sending an email out of malice. We can either (a) make the anonymous email service available to everyone, or (b) require a code from a provider in order to use it. While (b) would make everyone feel better, it would restrict access to anonymous partner notification to only those communities that happen to have providers that are willing to order or print access codes for their patients, and make sure to give their patients these codes. That’s not that many providers, not that many patients, and not that much of the infected sexual network getting notified.
Every day we wrestle with these issues. While a desire to make sex better gets me up in the morning, what keeps me up at night is what impact my decisions are having on the lives of the people receiving these emails. Technology gives us incredible power and a huge potential to change the world, the way we do or don’t communicate, and to transform the landscape of sexual health and well being in this country. That is beautiful and exciting and just so cool. Learning to code, for me, has been like learning magic. But trying to make sex better does lead to a lot of sleepless nights- and not in a good way.
Jessica Ladd is the founder and Executive Director of Sexual Health Innovations, a non-profit dedicated to using technology to transform sexual health and well being in the United States. She is also pursuing her PhD in Infectious Disease Epidemiology at the Johns Hopkins Bloomberg School of Public Health. Jess has previously worked in White House’s Office of National AIDS Policy, as a Public Policy Associate at The AIDS Institute, and as a sexual health educator and researcher for a variety of organizations. Jess also founded the The Social Innovation Lab in Baltimore and a chapter of FemSex at Pomona College. She received her Masters in Public Health at Johns Hopkins and her BA in Public Policy/Human Sexuality at Pomona College.