Two separate stories about herpes have popped up in recent headlines, and the news isn’t good. A “citizen-scientist” injected an untested herpes treatment live on Facebook, sidestepping preliminary studies on safety and effectiveness. Meanwhile, research into a promising herpes vaccine was shut down as the extent of one scientist’s severe ethics violations came to light. Both stories show that there is a strong demand for ways to prevent, treat, and cure herpes — and both are case studies in the wrong way to bring such therapies to market.

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Unscrupulous researchers may take advantage of people with stigmatized infections like herpes.

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Herpes is a sexually transmitted virus that can cause “outbreaks” of painful genital sores. Afterward, the virus goes dormant in the nerve cells, hiding from the immune system. In some people, the virus can “wake up” to cause temporary flare-ups of symptoms. Given how common this virus is, a preventive shot could help a lot of couples discuss their herpes status without as much fear of judgment and stigma.

While someday an effective herpes vaccine might be developed, recent headlines have been unfortunate examples of scientific experimentation gone horribly wrong.

Citizen-Scientists Doing it Wrong

On February 4, at a biohacking conference, Aaron Traywick took off his pants in front of an audience and injected his thigh with a syringe containing a never-before-tested herpes treatment — a type of gene therapy, a treatment that alters a patient’s DNA by inserting genes into their cells. Frustrated by the testing that pharmaceutical companies must do, and the regulations they’re saddled with, he thought his startup company could leapfrog over these steps and go straight from the lab to human testing, using himself as a guinea pig. In addition to the alleged herpes “cure” that Traywick injected himself with, his company makes a similar herpes vaccine, which they hope will prevent herpes infections in those who don’t have it.

Bringing a drug to market is a long, grueling process, culminating after years of meticulous science that moves from basic laboratory research, to animal testing, to gradually expanding groups of human volunteers to test for safety and effectiveness. Because people’s health is at stake, it’s not a good idea to cut corners, and using one man as a guinea pig doesn’t constitute a valid scientific study. Generally, a drug will be tested on thousands of volunteers for safety and effectiveness by the time the Food and Drug Administration (FDA) approves it.

Still, if this company deems its first “experiment” on Traywick to be a success, they hope to enlist human volunteers — bypassing FDA oversight, and possibly endangering lives. While the company claims its live-streamed self-injection stunt last month speaks to their “transparency,” in actuality the company doesn’t disclose exactly how their therapies are supposed to work. Its website gives a vague 28-word description of the treatments before directing visitors to sign up for a “wait list” to volunteer as test subjects.

So far, there isn’t close to enough information for would-be volunteers to give informed consent, and it doesn’t appear that there would be any outside oversight to protect their safety. While the company seems to frame volunteers’ right to try their experimental drugs as an issue of liberty, one could argue that they’re taking advantage of people with a highly stigmatized infection — one that many people are desperate to get rid of.

Research Scientists Doing it Wrong

In early 2017, media reported on a promising new candidate for a herpes vaccine. Using a completely different strategy than previous herpes vaccines, this one was thought to target the part of the virus that allows it to hide from our immune systems. If this vaccine works as hoped, recipients will be able to mount an immune defense when exposed to the virus, blocking it from establishing a permanent home in nerve cells. And, in people who already have herpes, the vaccine could suppress outbreaks.

Southern Illinois University owned the vaccine’s patent and employed the scientist who spearheaded its human trials. In late 2017, however, allegations of ethics violations surfaced, and earlier this year, all herpes-related research was halted at the university. What happened?

Before dying of cancer in June, William Halford conducted his human trials “off the grid” — injecting volunteers in hotel rooms rather than in clinics, and without the oversight of a university ethics board or the FDA to look out for the safety and well-being of human subjects. Many subjects were given the experimental vaccine in the Caribbean, specifically to evade FDA involvement.

Some say Halford’s cancer diagnosis made him eager to rush through the vaccine trials, unencumbered by university and FDA regulations. Like Traywick, Halford injected himself with his own vaccine in an attempt to test its safety — even though a single-subject “trial” won’t yield useful results. And, like Traywick’s vaccine seems poised to do, Halford’s vaccine drew people who felt stigmatized by their herpes infection and were desperate to get rid of it, even if it meant ignoring red flags. Several participants reported side effects, ranging from fatigue to “excruciating” outbreaks, but with the trial conducted under a shroud of secrecy and the investigator dead, we might never know if the vaccine caused these side effects, and if it showed promise in controlling infections.

Now, as Southern Illinois University conducts a full investigation, they have pressed the pause button on all other herpes research — setting science back, where Halford had tried to speed it along. Although it’s possible Halford was onto something, without properly conducted research, we may never find out.

If you have herpes, you can learn about living with the infection and get antiviral medications to suppress outbreaks from a Planned Parenthood health center. We can also test for herpes if you’re concerned you’re showing symptoms. The test for herpes involves a test of fluid taken from a suspected herpes sore, or a blood test if you don’t have symptoms.

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