CYW Brings Important Conversation About Health, Race, and Research to the Bayview
Last week, we were thrilled to kick off a dialogue in the Bayview that is at the heart of what we do: actively engaging members of the community to come up with effective solutions to prevent, screen and heal Adverse Childhood Experiences (ACEs) and toxic stress.
On October 22, the Center for Youth Wellness welcomed the family of Henrietta Lacks, the subject of the bestselling book “The Immortal Life of Henrietta Lacks,” and more than 150 community members and health leaders to San Francisco City College’s Southeast Campus to discuss the role of science and medical research in the African American community.
Henrietta Lacks’ cervical cells, taken without her knowledge shortly before her death in 1951, became the first immortal human cells ever grown in a laboratory. They were key to developing the polio vaccine, in vitro fertilization, and other scientific breakthroughs, and are still among the most widely used cells in the world. Her contribution has also led to critical conversations and changes around policies concerning the rights of patients and research subjects.
“We’re here to open a community conversation about research in our community,” said Dr. Nadine Burke Harris, our founder and CEO. “We can’t just set up shop and begin doing research. It begins with this community conversation.”
Sisters Kimberley Lacks and Jeri Lacks Whye, who live in Baltimore, shared dozens of poignant family photographs as they discussed the profound impact their grandmother’s life and legacy has had on their own lives, the research community, and people around the world. The book, they pointed out, has been translated into more than 20 languages.
UCSF researcher Dr. Esteban Burchard told the audience that over the last 20 years, less than two percent of the 10,000 studies funded by the National Institutes of Health has looked at minority populations, and African American researchers have a 13 percent less chance of getting their research funded. “There is a lack of empathy for studies of minority populations,” he said. “A systematic bias.”
During a lively question and answer session, community members raised important issues. “In a community like the Bayview that has so many disparities including chronic illness, violence and poverty, why is this conversation important to us? What can we do when we go home?” asked one audience member.
Dr. Burke Harris explained that a major driver of the health disparities in communities of color, and communities like the Bayview, is exposure to different stressors and higher levels of trauma. The CYW was created to understand why and how this happens and what solutions are most effective.
“There are two ways this conversation is key: being able to document and demonstrate,” she said. “As we do this work in the community, we see healing components all over the place—we know, for instance, that having the presence of a caring adult is a buffer to this stress. But we need to demonstrate the science behind it, and we need to have community participatory research to do this. The solutions, contributions, and ideas will come from the people in this room and in this community. That’s how the best science happens.”
Other audience members wanted to know how communities of color could overcome their reluctance to engage in research, and could best understand what their participation would involve. Dr. Howard Pinderhuges, Associate Professor of Social and Behavioral sciences at UCSF, said that knowledge is important. “We need to make sure people understand the research process, the medical practice, and ask questions and demand answers.”
Jeri Lacks Whye emphasized the importance of trust, and of overcoming the general feeling of mistrust many African Americans have held toward doctors. “Hearing the words ‘clinical trial’ can be scary,” she acknowledged. “The older generation often lets doctors tell them what they need and say ‘okay.’ The younger generation asks questions like, ‘why, what’s this for?’ So it starts with the youth. They must talk to the elderly, to other family members, to their communities. ”
A presentation from Leadership High School students underscored Whye’s conviction. Nine 11th graders researching toxic stress and its effects talked about the impact of toxic stress, the importance of research, and the call for community transformation.
“Henrietta Lacks’ Legacy: A Community Conversation with the Lacks Family” was supported by the Zellerbach Family Foundation, UCSF Medical Center and the UCSF Office of Diversity and Outreach. Interested in getting involved in our research? Please email us at email@example.com.