Published online by Cambridge University Press: 18 December 2021
As a veteran of ACT UP—the AIDS Coalition to Unleash Power—Matt Sharp has long been fighting inequality in science and medicine. While Jay Johnson was working toward the same goals—carefully, quietly, behind the scenes—Sharp was out in the streets. Sharp was among those arrested at the National Institutes of Health in May 1990 during an unruly protest with rainbow-colored smoke bombs and signs with powerful messages: “Clinical Trials Now,” “Silence = Death,” “Red Tape Kills Us,” and “One AIDS Death Every 12 Minutes.” When he signed up to join a genetic engineering experiment in June 2010, he did not know that he would soon be reliving battles from decades ago. after Sangamo Therapeutics altered his DNA, Sharp became entangled in a high-stakes struggle over the future of gene editing.
The pitch to join the experiment came one day over lunch in San Francisco, from Jay Lalezari, a trusted doctor who had become a friend. Gene editing was very risky, and only a single safety study had been conducted in humans—the trial at Penn Medicine in Philadelphia. Lalezari explained that the risks probably did not outweigh the benefits. Sharp, a white guy who was fifty-three at the time, had already put his body on the line for more than twelve clinical trials. “They gave me this opportunity,” he said. “ ‘Do you want to be the first person in this safety trial?’ I said nooooo. But I said that I’d be number two. This is a true story. I knew my number, 102.” (The first patient in the trial, number 101, did not wish to discuss the experiment. His medical record is protected by patient privacy laws.)
Before the study officially began, Sharp made repeated visits to Lalezari's clinic—Quest Clinical Research—so they could monitor his baseline health and collect his signature on reams of paperwork. During the informed consent process, a step required by US law for every human experiment, Quest staffdiscussed the medical and social risks with Sharp. If he agreed to have his DNA altered, he risked living with social stigma.