First, Do No Ageist Harm

When a Clinical Trial Reinforces Bias

A Study in Ageism

In 2022 I signed up for an online clinical study about brain health and answered a series of questions. The study materials said the research would help discover treatments for Alzheimer’s, Parkinson’s, and other brain disorders. Back then it seemed like a public service to provide information that could help fight disease. But when I completed a follow-up session, I came away with a different perspective.

Life after fulltime work gives us time to develop in new ways. That year I published my debut novel at age 68 and wrote the first draft of its sequel. I submitted a screenplay to a competition for women writers over 40. I drew on my background in biotechnology to judge regional and state science fairs. I presented at career fairs—another first. Over the course of the year, I walked hundreds of miles and lifted weights four times a week. And I shared the benefit of my life experience with my children as they made important life decisions (but only when asked!). As I began to answer the follow-up questions, I was curious how those growth experiences would be captured in the research study.

But they were not.

For an hour I answered one question after another about how my health, memory and functionality had declined. There were a dozen questions about hoarding (If emergency responders came to your home, is there so much clutter they would have trouble finding you?). There were questions about memory (Do you have more difficulty remembering names than six months ago? A year ago?). There were emotional health questions (How often do you feel hopeless?). There were self-care questions (Are you able to wash your entire body by yourself?). There were zero questions about developing new skills, completing new accomplishments, or sharing a lifetime of wisdom. Most multiple-choice questions allowed graduated responses for how badly you were doing (from slightly worse than a year ago, down to a polite version of “I suck at this”). But there was no separate answer for doing better than a year ago, just a box that combined doing better with doing the same as a year ago. For almost every question, there was no way to stipulate positive change.

As I answered question after question, I noticed that I felt less pride in my accomplishments and began to doubt myself. Maybe I do have more trouble remembering names than a year ago; how would I quantify that?

This is a legitimate ongoing clinical study approved by an Institutional Review Board charged with protecting patient safety.  The investigators running this study are physicians at a prominent California medical center. Funding is provided by charities and public health organizations. Yet the experience left me with doubts. As Lily Tomlin once said, “No matter how cynical you get, it’s hard to keep up.” In other words, follow the money. These investigators, immersed in the same ageist culture as the rest of us, are involved in research that will likely receive more funding if more people show signs of dementia. No doubt their research is motivated by the desire to help patients. But where is their incentive to study the positive aspects of aging?

I completed the follow-up session the same week that I read Becca Levy’s book, Breaking the Age Code: How Your Beliefs about Aging Determine How Long and How Well You Live. Dr. Levy is a researcher at the Yale School of Public Health who studies the effects of ageism on societies and individuals. She contrasts the opportunities for seniors in an age-positive culture like Japan with our stigmatized experience in the United States. In study after study, Levy documents that people exposed to ageist messages perform less well as those messages accrue. Ageism has a major effect on health. On average, people with positive beliefs about aging live 7.5 years longer than those with negative beliefs. This book raised my consciousness about the impact of ageism. On reflection, I wondered about the impact of a study that immersed participants in every negative health and behavioral stereotype of aging.

Can an approved research study like the one I was in lead to greater internalized ageism? Is a set of questions that asks only about decline and nothing about growth implicitly (or even explicitly) ageist? This study plans to enroll 100,000 participants. Does such a study have the potential to negatively affect their health and welfare? What is the responsibility of the Institutional Review Board overseeing patient safety for a study like this?

I contacted the Institutional Review Board and recommended that they review Dr. Levy’s research. I asked them to apply that learning to the California study they oversee. Could it harm participant attitudes, health, and even lifespan? No surprise: When I heard back after the Board met, the results were disappointing (more on that in the second part of this essay, coming soon).

When we examine our culture from a pro-aging, anti-ageist perspective, even science looks different. Science is not just about results and data. Science is driven by the questions we ask and equally by the questions we leave out. That is also true for clinical studies run by physicians whose careers exist to benefit patients. Surely, they will want to first do no ageist harm.