Henrietta Lacks died of cancer in 1951, before modern ethical rules governing patient consent. Lacks, a poor black tobacco farmer, was only 31, and had been treated for cervical cancer at Johns Hopkins University in Baltimore. Without her permission or knowledge, a doctor took tissue samples and gave them to a Hopkins researcher. Her cells took on a life of their own in the lab, giving rise to the enduring HeLa cell line used for any number of blockbuster discoveries, including the polio vaccine. The story of Lacks and her family, and the unthinkable exploitation of her very DNA, was the subject of Rebecca Skloot’s book “The Immortal Life of Henrietta Lacks” and is being made into an HBO movie starring Oprah Winfrey.
In death, Lacks is an iconic figure in biomedicine. But her life — and her presence — were also recalled vividly on Thursday night at Faneuil Hall by Victoria Baptiste, her great-granddaughter, and David Lacks Jr., her grandson, in an honest and sometimes emotional conversation about racial and ethnic disparities in the health care system. Their talk, to a packed house, was hosted by the Disparities Solutions Center at Massachusetts General Hospital as part of HUBweek, a weeklong festival founded by the Globe, Harvard University, MGH, and MIT.
It’s more than fitting that the moderator of the discussion was Joseph Betancourt, founder and director of the center, which grew out of a citywide effort launched by Mayor Thomas Menino aimed at erasing racial and ethnic disparities in health care — from consent in studies and clinical trials to quality of care itself. The scope of the problem was outlined in a stark report in 2003 by the prestigious Institute of Medicine. The report’s rigorous research made it clear that the root cause is race, not income: “Racial and ethnic minorities tend to receive a lower quality of health care than non-minorities, even when access-related factors, such as patients’ insurance status and income, are controlled.”
Over 10 years, the Disparities Solutions Center at MGH has trained scores of health care providers. “Stereotypes affect the way we care for people,” Bettancourt said bluntly. Blacks are less likely to receive top-notch pain treatment or cardiac care, for instance, often because of stereotypes rather than science.
The story of Henrietta Lacks is a powerful, if painful, illustration of how the most vulnerable can be exploited. But the Lacks family should be commended for working with the National Institutes of Health and others to bring truth and transparency to the dialogue about racial bias in health care, so wrongs can be corrected for future generations.