The healthcare system is working to regain the trust of African Americans with help from the family of Henrietta Lacks, who was an unwitting participant in medical research in the 1950s.
The ongoing story of the late Henrietta Lacks, the African-American woman who unwittingly provided cells for years of medical research, has much to offer those battling disparities in healthcare, according to family members who spoke in Boston last week.
That message, delivered at a panel discussion, came from Lacks' grandson David Lacks, Jr. and her great granddaughter Victoria Baptiste, RN, as well as Joseph Betancourt, MD, director of the Disparities Solutions Center at Massachusetts General Hospital.
Baptiste said that older African Americans still distrust hospitals.
For years, rumors persisted in Baltimore that John Hopkins Medicine sent out "body snatchers" to find live subjects for use in medical experiments, she said.
Read: Prologue from "The Immortal Life of Henrietta Lacks
It was at Hopkins that doctors harvested Lacks' cancer cells in the 1950s and created a widely used HeLa cell line. (Lacks did not survive the cancer.) In later years, doctors sought blood samples from surviving Lacks family members, but never told them why, Baptiste said.
Since the 2010 publication of the best-selling book on the case, "The Immortal Life of Henrietta Lacks," much has changed. The family is now involved when decisions are made about the use of the cells' DNA sequence, Baptiste said.
And, African Americans are working to regain trust in the healthcare system, she told a full house at Boston's historic Faneuil Hall.
Familial Oversight, Input
"It is up to our generation to try to break down some of those barriers," she said. "The more educated we are... and the more we see representations of people that look like us – (that) will help us to have a better relationship with hospitals and medicine in general. "
The Lacks family members now sit on an NIH committee that oversees the use of the cells' genomic information. After a researcher sequenced the HeLa genome in 2010, ethical issues emerged about family privacy and the publication of the complete genome online.
Learning that the family had not been consulted, the National Institutes of Health stepped in, brought Lacks family members up to date on research into the genome, and formed the oversight committee.
David Lacks, Jr., who is a member of that committee, and Baptiste said they were pleased to finally be brought into the discussion about the use of the HeLa cells for research.
"We were able to have a seat at several tables to see how the wrongs are being corrected for future generations," Baptiste said.
Betancourt said he thinks the involvement of Lacks family in the ongoing work with the cells is "a story of hope, healing, and transformation… I think it's that type of energy and enthusiasm we need as a nation. And certainly healthcare leaders need to work with their communities to make a difference."
The system is making progress toward correcting health disparities, but it is never fast enough, because lives hang in the balance, Betancourt said.
"I don't think I'll ever be satisfied, and I don't think we should be until we are really sure that everybody is getting the best we have to offer, we don't have situations like this happening and patients can feel cared for and trusting," he said.
Tinker Ready is a contributing writer at HealthLeaders Media.