Following the people and events that make up the research community at Duke

Tag: medicine

Trust-Building, Re-Visited History, and Time Pertinent to Achieve Health Equity for Black Americans

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Along with being a beautiful person and leading a productive life, Henrietta Lacks is the mother of modern medicine. Her scientific child was born without Henrietta’s consent through the clinical breakthroughs and medical miracles achieved with the help of her cervical cells – HeLa cells – stolen without her knowledge when she sought healthcare. Ironically, the same treatments developed from the cells of this Black woman are inaccessible for many Black Americans contemporarily. Though Ms. Lacks passed away from cervical cancer at the premature age of 31, her unique cells have become immortal. Her story lives on as a pertinent reminder of the importance of building trust between medicine and the Black community. In honor of her birthday, expert panelists met to both celebrate Ms. Lacks and discuss the path forward in trust-building, equity, and reckoning with our history to change the narrative of healthcare for Black Americans.

The panel honored Henrietta Lacks through discussion of the path forward for biomedical research and Black communities. The panel was hosted in August in remembrance of Ms. Lacks’ birthday on August 1st.

The panel, which took place on Tuesday, August 31, began as a conversation between Nadine Barrett (Ph.D.), Robert A. Winn (M.D.) and Vanessa B. Sheppard (Ph.D.). Among their many other titles and positions, Barrett is Director, Center for Equity in Research, Dukev CTSI and Associate Director of Equity, Community and Stakeholder Strategy, Duke Cancer Institute, Dr. Winn is the Director of the Virginia Commonwealth University (VCU) Massey Cancer Center, and Sheppard is the Associate Director of Community Outreach Engagement and Health Disparities at VCU Massey Cancer Center. The trio were joined by Reuben Warren (D.D.S., M.P.H., Dr. P.H., M.DIV.), Director of Tuskegee University’s Bioethics Center, along with a handful of other contributors including Veronica Robinson – Henrietta Lacks’ great-granddaughter and a registered nurse who represents the Lacks family on the NIH panel that reviews applications to conduct research using the HeLa genome.

A screenshot of panelists who took part in Tuesday’s conversation.

Winn began by referencing the U.S. 1932 public health service study that took place in Tuskegee, Alabama. The experiment exploited Black men in Tuskegee when an effective form of treatment for syphilis was discovered 15 years into the study but withheld from participants “to track the disease’s full progression.” In 1972, 40 years after the study began, it was the associated press, not the scientific community that finally led to the experiment’s demise and the issue of an apology from the U.S. President.

As Warren pointed out, the issue with the study was less about the treatment and more about the dishonesty, the falsifying information, and lies. “Stop calling them poor, stop calling them all sharecroppers,” Warren said of the Black men who participated in the study, “They were far more than that.” “[The study] was an issue of trust, not an issue of ignorance,” he continued. Unfortunately, when talking about this story, Winn said that Black Americans “don’t always talk about the power of us standing up and saying not again.

Bioethics violations have been a continuous part of the biomedical research enterprise in the U.S., and race and racism have been part of scientific inquiry, which continues to be of great concern, Warren said. Often, rather than putting preventative protections in place, bioethics regulations have come as a reaction to extreme violations of justice. Thus, Warren laid out a central theme of the panel that “You build trust by making yourself trustworthy and that takes time.” Rather than initiating transactional research with Black communities when the scientific and medical community needs something, Warren offered that they should start when they want to help with something.

Dr. Rueben Warren presenting examples of bioethics violations in the history of biomedical research, with most examples stemming from the United States

As Sheppard said, “[Black people] have earned a mistrust” for medical communities. This is largely hinged on Barrett’s argument that the American systems from health to education to criminal justice “are working as they were designed” – to ensure that the very inequalities that exist today came to be. Using the analogy of a marathon, Barrett said while white men in the U.S. started the race 450 years ago, Black men and women only began running this race hundreds of years later. “Those who start the race are going to…ensure that they thrive,” Barrett said. This has led to Black people dying disproportionately from often treatable diseases, Sheppard said, continuing to add that these sorts of disparities were front and center for the world to see during the COVID-19 pandemic.

In the creation of our structural inequalities, the system created “two bookends: Black and white.” But there has to be a narrative that keeps this story alive. “In order to create the change, we have got to do the work to change the narrative,” said Barrett.

Nadine Barrett (Ph.D.), Director of Health Equity and Disparities at Duke Cancer Institute

Robinson pointed to the importance of history, paralleling Warren’s comments that in focusing on health equities we are fully focusing on the future in a way that ignores the past and does not deal with “what really brought us into health disparities” in the first place. Robinson said that we “can no longer sweep [conversations on the historical injustices of medical racism] under the rug.” She continued to say that the reason why Tuesday’s conversation and the ongoing dialogue that is sure to follow is so powerful is because “we are no longer victims in our own legacies” by taking over conversations at the table rather than being the topics of discussion at the table.

Mistrust in the Black community for systems of medicine and healthcare are based on hundreds of years of action. Hesitancy – from Covid-19 vaccinations to participation in clinical trials for cancer research – amongst Black Americans “aren’t us saying no,” said Robinson, “We’re saying something happened.” Sharon Ribera Sanchez, Founder-Director of Saving Pennies 4 A Cure, is a cancer survivor and advocate for people of color to engage in clinical trials because of the difference they can make in medical developments that draw on more diverse and robust data.

But there is a bigger conversation than just having more Black folks take place in research and clinical trials, Winn said. “How are you going to look at my biology without looking at my history?” he asked, referencing the genetic implications of environmental conditions and stressors from socially constructed race that impact DNA.

An image of HeLa cells

The dialogue, which was opened and closed with a prayer, also spoke to the importance of establishing regular, ongoing, transparent relationships between the Black faith community and the medical community. This should happen, not just in times of crisis, because “mass hysteria is prime for miscommunication,” Ralph Hodge, pastor of the Second Baptist Church in South Richmond, Virginia, said.

“Today was a big way of us looking back at the past, looking at where we are at now, and moving forward to the solutions,” said Barrett. This comes by letting communities know that we care, said Winn, along with “doing things with our communities, not through them.”

A key factor in deconstructing this issue and achieving health equity is time. Time to reflect on the past in order to avoid reliving it; time to generate innovative solutions to the problems at hand; and time to invest in Black communities – to learn from them, support them, and earn their trust not because they can offer science something, but because science has something to offer them.

Post by Cydney Livingston

The Diversity Problem in Science

With COVID-19 being a fixture of our lives for nearly a year now, science has been a staple in the news. Along with science, though, a long-overdue conversation about the state of race relations in America has taken center stage, which makes diversity in science a critical topic to delve into. COVID-19 has highlighted not only a national crisis in healthcare response, but also longstanding health disparities across racial and socioeconomic groups that have only been exacerbated by the pandemic.

 On Wednesday, January 27, Dr. Gowthami “Gow” Arepally, known for her work as Professor of Hematology at the Duke School of Medicine, led a talk called “The Diversity Problem in Science” that aimed to highlight not only the obvious problems in research but the urgency with which everyone, from the individual to the collective level, should aim to address the problem within their spheres of influence. Dr. Arepally is not only known for her work in the medical school but also as a valuable mentor for colleagues, undergraduates, and high school students — a point that was highlighted as an important way non-URM (under-represented minority) scientists can make a difference.

Gowthami Arepally, M.D. 

Underrepresentation in science starts early, Arepally says. For example, while discrepancies in graduation rates between Black/Hispanic students and their white/Asian peers are not bad in high school, they get progressively worse through college and beyond. In 2016, 18% of degrees nationally were awarded overall in STEM fields — but this number drops to 12% for Black students and 15% for Hispanic students. As of 2015, Black applicants have lower medical school acceptance rates than peer applicants – 34% versus 44% for their white counterparts. And the numbers get worse further into medical school; Black students and Hispanic students each represent less than 6% of medical school graduates, while a staggering 80% of graduates are either white or Asian.

This perpetuates a cycle going into the workforce that discourages young underrepresented minority (URM) students from entering STEM, seeing a lack of role models that look like them. As of 2016, only 39% of full-time faculty at medical schools were female, and a mere 4% of faculty were Black. This results in barriers to NIH research that further hold URM scientists back. Between 1999 and 2012, 72% of NIH awards were given to white scientists and 24% were given to Asian scientists, but only 2.4% of these awards were given to Black scientists.

This is a story that is shocking when told through statistics but is all too familiar, as an experience, for minority students and researchers interested in pursuing careers in the sciences. However, there are concrete ways to counter the problem. As Dr. Arepally pointed out, NIH Diversity Supplements for existing NIH grants can be obtained from the high school to faculty level as an added source of support for URM researchers. Medical societies themselves can be sources of diversity initiatives, such as Dr. Arepally’s society, the American Society of Hematology, which boasts one of the most aggressive minority recruitment initiatives. Within Duke, many pipeline programs exist for researchers to support URM students and new researchers and faculty.

Chart of pipeline programs at Duke

Most importantly, it’s important for individuals to enact change on a personal level. Whether it means educating oneself on underrepresentation, advocating for the advancement of other URM trainees and colleagues, or committing to the success of URM students through pipeline programs, individual steps can add up.

And as Dr. Arepally highlighted, these steps, however small, are important to prioritize. Increasing diversity in medicine, for example, can help address existing health disparities. URM physicians are more likely to address the care of minority populations, while minority patients are more likely to choose URM populations. And the existence of more URM physicians improves the cultural competency of all trainees. Sex diversity, too, has a positive effect on the quality of science in collaborative groups. The impacts of diversity extend to role-modeling for younger students, who may be at a crossroads in terms of determining a future career. In this way, current measures to increase diversity can foster a cycle of more diverse students entering STEM and being supported there, for generations to come.

Diversity in science is not only good for science and scientists, Arepally says, but for all of us. Science should reflect the society it serves, and with more diversity in science, breakthroughs will be applicable and accessible to every person —  not just the majority.

Post by Meghna Datta

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