But the contribution Lacks made to medicine was largely unknown for years. Her own family was not informed of the HeLa line until the 1970s and have never been compensated for the cells that have been used for everything from cancer and AIDS research to gene mapping.
The way Lacks was treated is one of many examples of experimentation that has led to exploitation, injury and even death, which together are at the root of decades of mistrust of medical science among certain communities.
"All sorts of ethical research violations as well as the prevalence of health disparities that we have going on in this country give underserved and marginalized communities some sincere pause for trusting and working with medical researchers," said Teri Browne, an assistant professor at the University of South Carolina's College of Social Work.
Recent changes to the Common Rule, the federal law protecting human research subjects, upset patient advocates who worried the first update to the law since it was written in 1991 would threaten patient privacy and allow for biospecimens to be used without patient consent.
But the relationship between patients and researcher may finally be changing, as the advent of precision medicine is altering the way in which clinical trials are conducted, with treatments being tailored more toward a patient's genetic makeup rather than the type of disease they have.
"The standard cancer trial was you took patients with a certain type of cancer and randomized them into treatment A versus treatment B and looked at the effects on survival and other outcomes," said Dr. Sundeep Khosla, a Mayo Clinic endocrinologist and clinical researcher. "With precision medicine and the ability to sequence the tumors, you might have patients with lung, ovarian or breast cancer all part of a trial because they happen to have a common mutation that happens to be targeted by a particular drug."
That approach requires a collection of patient personal data on a scale that has never been seen before, which could mean that getting complete data sets within those disenfranchised groups could be difficult, given their past. "Medical researchers in our country have a pretty bad history of research ethics when it comes to vulnerable and underserved communities," Browne said.
Perhaps the most egregious example occurred from 1932 to 1972 through the U.S. Public Health Service. Known as the Tuskegee syphilis experiment, researchers observed the progression of syphilis in 600 poor, African-American farmers in Alabama without ever telling them they were infected with the disease, or providing them with treatment despite the availability of penicillin as early as 1947.