After her death 73 years ago, Henrietta Lacks’ story has sparked a new approach to patient consent and data privacy.
HeLa cervical cancer cells, stained blue, are visible under a microscope. The HeLa cell line was initially taken from Henrietta Lacks at the Johns Hopkins Medical Center in 1951 without her consent.From crucial vaccines to new insights about diseases, nearly all biomedical research starts with the study of human cell samples in a lab.
“We know that in cancer, there's a lot of genomic alterations in the chromosomes,” says Sabarinathan Radhakrishnan, who researches cancer genomics at theHow Could Ancient Viruses Embedded in Our DNA Fight Cancer?HeLa cells are unique in their ability to grow and divide indefinitely in a clinical setting; while all cancer cells can replicate within the human body, other human cell lines are often very difficult to maintain in a lab.
But for descendants of Lacks and others whose genetic data was taken before these laws were put in place, it can be challenging to correct violations of these protections that occurred before they came into effect. Jorgenson, Graham, and the rest of the working group review research statements from scientists who are interested in using the HeLa cell line. They consider how interested parties plan to use the cell line, whether it’s in line with a biomedical research objective, and whether applicants plan to develop intellectual property based on their findings.
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