Teens Think Up Ethically Questionable STI Detection Method
Because there’s nothing the media likes more than a good look at all these teeny genius stories (except maybe catching a politician with their pants down, figuratively or literally), the primary non-Supreme-Court-ruling-on-Obamacare story making the rounds right now is the S.T.EYE condom, developed by three teenage boys from the Isaac Newton Academy in London. The S.T.EYE changes colour* when it comes in contact with a sexually transmitted infection (hence the name), which is being heralded as ground-breaking, revolutionary, disruptive technology—of course, since this was a TeenTech entry and winner. One of the young inventors, Daanyaal Ali, 14, says that they created the S.T.EYE because they wanted “to make something that made detecting harmful STIs safer than ever before, so that people can take immediate action in the privacy of their own homes without the often-scary procedures at the doctors.” (And as an aside, I find it fascinating that the teenagers want to reduce the embarrassment of going to clinics and emphasize “the privacy of your own home” line so frequently used by DTC advocates without stopping to consider the major hurdle of: if you’re putting the condom on to have sex with someone(s) else, then you’re not alone and we’re right back to the embarrassment-only this time it’s in the privacy of your own home while you’re naked in front of someone you want to have sex with. Which kind of sounds like it should be the beginning of an 80s movie starring Jon Cryer.)
This is an ambitious goal, and it’s laudable that teenagers are behind the idea; a validated, direct-to-consumer, at-home STI test that is inexpensive and accurate would be a great addition to public health. I’m not sure anyone can disagrees with that. The problem here is in implementation: the teens envision their test being wrapped up in a condom, which means that at least one person’s STI test will be revealed after-the-act, rather than before. While you may think “great, post-exposure notice,” it’s not that simple. What happens, for example, to informed consent? You’re talking about revealing whether or not someone has an STI to not just themselves but their partner(s)-at-the-moment; is there something that clearly identifies these as S.T.EYE condoms? Will it be impossible to miss that this condom your partner is providing (or that you provide a partner) will glow in the presence of an STI, regardless of who is infected? Will all parties need to sign a contract honoring the privacy of all participants before opening the condom? Will it come with a EULA-disguised-as-informed-consent? Remember, informed consent can’t be coercive-is right before having sex the bestest time in the world to assure non-coerced consent?
And other difficulties: how do you know who “triggered” the glow? Presumably it glows the same “uh-oh” colour regardless of which side of the condom the exposure occurred on. What if there are multiple partners? Are they considering impregnating dental dams with the same technology to include lesbians, or is this only for penis-based sex? Will the antibodies in the condom react to antigens in saliva? Can you still use lube? But, with exception of exactly who this condom is being created for, those issues are largely technical issues, and they’ve been well-deconstructed elsewhere.
Autonomy to make decisions, ability to consent after given full information, privacy of medical information; these are all pretty basic medical ethics 101 concepts, and they’ve been ignored here. I certainly don’t fault a trio of teenagers for that-but I can and do fault the teachers who encouraged them to pursue this line of thought, as well as the people who awarded it as innovative (not to mention the non-critical journalists breathlessly reporting it).
Innovation is the lifeblood of the technology industry; I understand that. My father had his own technology business when I was a kid. I was part of the technology innovation industry for a decade, and played a role in disruptive medical technologies.1 I was raised in Silicon Valley before it was Silicon Valley; I do understand, and I have no real interest or desire to stifle creativity, innovation, or even disruption. The problem is that in the pursuit of “can” at all costs, “should” is being left in the dust. Should we develop condoms that glow on exposure to STIs? Maybe not. Why? Well, how about the scenario where someone is killed for exposing someone to an STI? How about the person who is too embarrassed or ashamed to get help and kills themselves? What about the person who is shamed across their community, online, for having an STI, with a glowing condom as “proof”? And why do I even have to reach for such dramatic examples of “maybe we shouldn’t do this,” when “how do you manage consent” is such a present and problematic issue?
Of course, this isn’t just about innovation-it’s also about disruption. And the disruption here isn’t the idea of color-changing-upon-STI-detection condoms, but who is having the idea: teenagers. These teens are envisioning medical devices that are conveying diagnostic information, and they’re doing so outside of the normal channel that we expect medical devices to be developed in. That means the typical standards that are in place for medical device development (specificity, standards, quality control, labeling requirements, documented risks, etc) haven’t been addressed (or likely even thought about). To quote Nick, “In the world of distributed technology, these things are increasingly up to the individual, and we need to start adopting an “ethics of design” into our disruptive tech scene.” In other words, this project shouldn’t have made it to a technology competition without serious consideration given to plausibly, specificity, testing standards, and the other things that, presumably, the condom manufacturing company that has partnered with these teen boys will now take on.
It’s fantastic that there are challenges like TeenTech to encourage teenagers to pursue STEM-related careers. However, we need to make sure that we are setting the foundations to good research by teaching all aspects of research and development, including ethics, and make sure that our enthusiasm for encouragement doesn’t overshadow the necessity of ethical oversight.
*26 June 2015: Just a quick clarification, based in Maggie’s nice comment below: I want to stress that the idea the teens presented at TeenTech are conceptual ideas, not actual prototypes or working models. I do think that this stage is definitely where the “ethics of design” needs to be built in, but presumably—hopefully—that dialog will continue happening as the teenagers partner with a company to see what happens in science after you have that initial “oh hey” idea.