Massey, Duke and Community Members Begin Charting a Path to Trust in Research

The event featured talks from Henrietta Lacks’ great-granddaughter and a bioethics leader at Tuskegee University

On Tuesday, August 31, 2021, researchers from Virginia Commonwealth University Massey Cancer Center, VCU Wright Center for Clinical and Translational Research, Duke Cancer Institute and the Duke Clinical and Translational Sciences Institute, held a virtual event kicking off a series of conversations aimed at building trustworthy medical and research establishments, which have historically alienated, ostracized and abused marginalized and minoritized populations. The ultimate goal of the series is to make medicine and research more inclusive and accessible.

The event honored the life and legacy of Henrietta Lacks, whose unique cervical cancer cells, dubbed “HeLa cells,” were integral to global medical advances enabling the treatment or prevention of diseases such as polio, AIDS and cancer – all without her or her family’s consent. Lacks died from cervical cancer in 1951, at the age of 31.

Henrietta Lacks’ great-granddaughter, Veronica Robinson, kicked off the discussion by sharing her perspective as someone whose family was harmed by dishonesty in biomedical research yet went on to channel that hurt into combatting medical racism and effecting positive change.

"We need to be at the table, not be the conversation at the table," said Robinson, who is an active member of the Henrietta Lacks Legacy Foundation and represents the Lacks family on the National Institute of Health panel that reviews applications for research using the HeLa genome.

More than 750 people from around the world joined the discussion, which was led by VCU Massey Cancer Center director Robert A. Winn, M.D.; Duke Cancer Institute associate director of equity and stakeholder strategy Nadine J. Barrett, Ph.D.; and VCU Massey associate director of community outreach, engagement and health disparities Vanessa B. Sheppard, Ph.D.

This first event, which was produced in a partnership with the HELA100 initiative celebrating Lacks’ 100^th birthday, sought to lay a foundation cemented in history, to start the conversation about where we stand now and what the path to trust might look like.

Barrett, who also directs the Center for Equity in Research within the Duke CTSI, set the stage by likening structural racism in America to a marathon.

“Bam! The gun goes off. White men start running… 150 years, bam! White women start running… 250 years, now we’re at 400 years, bam! Black men start running… 50 years after that, Black women start running,” said Barrett, who is also an assistant professor in family medicine and community health at the Duke University School of Medicine.

She went on to explain that those who started first built the systems, policies and practices that govern our lives, from health care to housing to education and criminal justice. These systems were intentionally set up in a way that benefits white people, while ensuring others – particularly Black people – would be at a disadvantage.

Barrett also highlighted the power of the false narratives about Black people that were created to reinforce the racist and white supremacy culture, which still persist today and serve to perpetuate racism in medical care and research. Accountability is the first step toward transformation, Barrett concluded.

The keynote speaker was Rueben Warren, DDS, Dr. P.H., M.Div., director of the Tuskegee University National Center for Bioethics in Research and Health Care, which is not coincidentally situated at the very same institution that between 1932-1972 infected Black men with syphilis and withheld treatment, in the name of scientific research.

“You gain trust by proving yourself trustworthy” said Warren, a professor of bioethics at Tuskegee. “Don’t come to me when you want something, come to me when you want to do something.”

Next, the audience watched a video that Duke Cancer Institute and the Duke CTSI produced about a training program Barrett designed called "Just Ask: Increasing Diversity in Clinical Research.”

The video highlighted how implicit bias often leads clinicians and research teams to assume patients belonging to certain racial or ethnic groups wouldn’t be interested in clinical trials, so they don’t even ask.

“You can’t assume someone is going to say ‘no.’ You’ve got to ask,” said Winn, who holds the Lipman Chair in Oncology at Massey and is also senior associate dean for cancer innovation and a professor of pulmonary disease and critical care medicine at the VCU School of Medicine.

The session concluded with a panel of community partners and academics, who answered audience questions. The panel consisted of Sharon Rivera Sanchez and Pastor Ralph Hodge of Richmond, VA, as well as Pastor Orlando Dowdy, D.Min., and James Tabron of Durham, NC, and all of the previous speakers.

Much of this discussion centered around the practical side of engaging the community in biomedical research, such as employing clinical trial navigators, who help patients through the process of getting involved in research, and adopting a decentralized clinical trial model, so that patients don’t have to travel great distances to participate.

One key theme that emerged is that it’s not enough to stay cloistered away in academia, continuing to do what has always been done.

“We need to meet people where they are – where they eat, where they sleep, where they pray, where they play,” Robinson said. “That’s where we get to eliminate these disparities. Until then, we’re going to continue to live in 1951.”

When asked specifically about how to engage communities in research, panelist Rivera Sanchez responded that it’s important to “always have boots on the ground.” To this end, Rivera Sanchez serves as a board member on VCU Massey’s Minority Underserved NCI Community Oncology Research Program (NCORP), which brings clinical trials out of the university medical center and into community clinics, where 80% of cancer patients receive their treatment.

As a cancer survivor and trial participant herself, Rivera Sanchez, the CEO and founder of the non-profit Saving Pennies 4 a Cure, always asks patients she meets through her advocacy work whether they’re engaged in clinical trials, and if not, then why? It’s a two-way conversation, and tone matters, Rivera Sanchez pointed out.

“When we invite people to the table, we need to let people know that we really care,” added Tabron, a member of the Durham County Men’s Health Council. “If we go in with that attitude, and we have a relationship that extends over time, we can add a lot of value to people who want to get and stay at the table.”

This event was meant to be the first word, not the last, in a continuing series of dialogues around race, scientific research and the path to trust.

“This is the start of something, and we are excited about action,” said Sheppard, who holds the Theresa A. Thomas Memorial Chair in Cancer Prevention and Control, directs the VCU Massey Office of Health Equity and Disparities Research and serves as chair and professor in the Department of Health Behavior and Policy at the VCU School of Medicine.