Parsing the role of race in Alzheimer’s biomarkers

As a researcher, Dr. Wharton concedes she has more time to figure things out. She makes the most of it, including with her lengthy questionnaires. That, too, has been a revelation.

When she notes, in her grant applications, that subjects will be asked to fill out a 90-minute questionnaire about lifetime and situational stress, an hour-long questionnaire about systemic racism, etc., she’s often met with review pushback. “They’ll say, That’s just too much of a time burden for participants.

“But I have never had a participant ever say, I don’t want to answer these questions,” she continues. “In fact, it’s just the opposite. I’ve had participants say, This did take a lot of time, but thank you for asking.” It’s not a matter of etiquette, she says; rather, patients appreciate being asked about matters that affect their health. And a more detailed, inclusive approach will lead to data that’s ultimately more useful, she says. “As a gay woman, I remember the first time I was asked about my sexual orientation in a health care setting,” she says. It happened when she was about 30. “I didn’t mind answering extra questions because they were taking it into account for my health care. I vividly remember that.”

That all makes intellectual sense. What about actually doing the work?

Dr. Wharton is blunt. “It takes a lot of work on the part of researchers to go into communities and make the concerted effort to enroll people of color.”
She explains: “We have to prove ourselves trustworthy, and we have to physically go into the communities, and then we have to go back and keep going back.” With this comes a change in mindset—researchers can’t begin their recruitment efforts in the typical way, with a so-called ask. That simply doesn’t work in patient groups that are used to being brushed aside if not blatantly ignored. “We can’t go in there and explain to them why they haven’t involved themselves in clinical research,” she says. “We need to look inward, and say, Why haven’t you been, and what can we, as scientists and clinicians, do better to ensure you’re represented?”

This is a major shift, she says. “The problem is not with people of color, or the LGBTQ community. We in medicine are the problem.

“So we need to fix that,” she continues. “It really is just a boots-on-the-ground, grassroots question that takes time and effort. And a lot of listening. So instead of going in and preaching and saying, This is what’s wrong, and this is what we need to do, and this is what you need to do, we need to say, How can we help you? What, in your opinion, are the barriers? And then, How can we have an honest and open conversation and address those barriers? What can we bring to you that will cut down on your clinic visits? Can we give you transportation? Do we need to pay people more? What do we need to do?”

This lays the groundwork to identify truly useful biomarkers and cutoffs, she says.

This is also the type of work that led her to meet with Reuben Warren, DDS, DrPH, MPH, the director of the Tuskegee University National Center for Bioethics in Research and Health Care. In fact, she was helping to lead a participant appreciation event; other speakers included Dr. Hu and Dr. Warren. Several hundred participants attended. (“It was a pretty big deal,” Dr. Wharton says.)

The three of them spoke openly about the importance of trust and trustworthiness, she says. They then fielded questions from participants, for nearly three hours. “They got to ask all their questions, and we answered them. We had hard conversations about terminal illness, but also how to prevent disease. It wasn’t just, Thanks for participating, and no one has any idea what happened in the study.

“We tried to help them understand what an important and vital role they played. Because without them, it doesn’t matter how many publications we get, or how many grants are funded,” she continues. “If we don’t have people willing to donate their time and their body fluids, then we have nothing.”

Dr. Wharton has had plenty of surprises throughout this work, including those that have prompted her to reject prevailing beliefs about the impact of the Tuskegee syphilis study.

Ten years ago, she says, “I was in the camp that attributed low numbers of people of color in clinical trials to that study, and to other past research atrocities. And Dr. Hu said, We actually need to do a study to address this issue, because we don’t know if it’s accurate or not.”

So they did. And it wasn’t—not completely.

“We found that even [among] people who had heard of the Tuskegee syphilis study, a lot of the information they thought they knew was inaccurate,” says Dr. Wharton. It may be worth talking about with participants in studies, and always openly, she says. “But it’s not the sole barrier to research,” despite its continually being cited as such. “For me, that was an aha moment, because we had been saying forever that it was.” (The preprint research paper is available at: http://dx.doi.org/10.2139/ssrn.3555860.)

That means medicine has another problem to fix. “An overwhelming majority of clinicians and research scientists are white—myself included,” Dr. Wharton says. It’s not just a matter of enrolling people of color in clinical trials. “We need more people of color actually doing the research. Being able to go into their own communities and gain trust—that’s a whole different conversation. If you don’t see yourself in the intervention—if you don’t see yourself in the people who are going to help you—what does that mean?”

The flip, and equally important, side is that researchers can fall into the habit of hiding behind diversity. With the best intentions, they set out to include more people of color in their research. “And then they say, Then I need to hire someone specifically to go into that community, because that person shouldn’t be me.”

Research teams need to be diverse, Dr. Wharton agrees. “But that researcher—be it a person of color, or a member of the LGBTQ community—can’t be the only representative from your lab going into the community. That is a huge misstep, in my opinion. And it happens all the time.”

She recounts a conversation she had with a colleague who spoke glowingly of a new outreach coordinator she’d hired, a Black woman who was well connected with churches and other groups in the Black community. Dr. Wharton asked if the coordinator would be accompanying her colleague to speak to communities.

Recalls Dr. Wharton: “She said, Oh, I don’t go into communities myself. I’m afraid I might say something wrong. I said, ‘Dr. So-and-so, you probably are going to say something wrong. But that’s OK, as long as you’re honest. And then they will correct you, and you’ll move on. But you need to go into the communities, because you’re the one asking them to come to you as a clinician. They need to hear from the PI why you’re doing this. You’re the best person to answer those questions. You have to be open and visible. You can’t just be the Oz behind the curtain.’”

When she and colleagues apply for NIH grants, they have to disclose they will collect information on racially representative cohorts. The next step, she says, “is actually holding scientists accountable to the numbers they say they’re going to include.”

As the medical community chips away at entrenched practices, Dr. Wharton sees change coming on another front. Though she doesn’t formally teach—“I’m 100 percent researcher”—she does mentor students. The focus is biomarkers—this being, after all, a clinical laboratory. But with a twist. Since students are not fully embedded in the medical field yet, they don’t see a tradeoff between looking at biomarkers and looking at the social determinants of health, she says. Rather, they start out willing to encompass complex societal and structural issues into their research.

She finds this fascinating. “Almost all of my students are in or going to attend medical school. They don’t see health disparities questions as a time sink or unimportant, even though they want to be biomarker-heavy in their work.

“They don’t see a separation,” Dr. Wharton says.

Put another way, that’s zero degrees—sans Kevin Bacon.

Karen Titus is CAP TODAY contributing editor and co-managing editor.