Author(s): Jill A. Fisher

Medicine

Explores the social inequality of clinical drug testing and its effects on scientific results

Imagine that you are testing the safety and efficacy of an experimental drug in what is called a Phase I trial. The only direct benefit to you of participating is that you will receive up to $5,175 for completing the study. If you choose to enroll, you must spend twenty consecutive nights literally locked in a research facility. You will be told what to eat, when to eat, and when to sleep. You will share a bedroom with several strangers. Who are you, and why would you sign up for this kind of test?

This book explores the hidden world of pharmaceutical testing. Drawing on two years of fieldwork in residential research clinics across the United States and 268 interviews with both volunteers and staff, Jill A. Fisher finds that decisions to enroll in such medical studies are often influenced by poverty, a history of incarceration, or being a member of a minority group who faces social and economic inequalities, and so has limited options for income. She shows that the healthy people who participate in Phase I clinical trials are typically recruited from African American and Latino/a communities and that they are often serial participants who obtain a significant portion of their income from being included in such clinical trials.

Adverse Events thus shows how social inequality fundamentally shapes Phase I trials. Moreover, it shows that participants, in their quest to continue to be picked for inclusion and maintain their income from such trials, form their daily habits in an effort to stay healthy enough to continue to qualify. But in actually improving their health to ensure that they are model volunteers--or in sometimes skirting rules about how long to wait in between trials by moving from clinic to clinic--these serial participants can end up affecting the validity of the trials themselves.

From the often desperate circumstances of serial study participants, to the very validity of these trial results, Fisher explores the social inequalities and less-than-trustworthy findings of medical research in which nearly everybody involved is incentivized to game the system. Adverse Events provides an unprecedented view of the intersection of racial inequalities with pharmaceutical testing, signaling the dangers of this research enterprise to both social justice and public health.