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It's been 75 years since doctors took Henrietta Lacks' cells without her consent or knowledge in 1951 and used them for research, creating an 'immortal' cell line that's still used today—but modern policies and legislation around patient consent remain complex.

Findings

Additional insights we found via 1440 Originals

  1. Lacks, a Black mother of five with cervical cancer, had sought care at Johns Hopkins Hospital, one of the only facilities providing care to Black patients. At the time, doctors at the facility were routinely taking samples from patients' tumors and healthy tissue without patients' consent and sharing them with a researcher.

  2. In the lab, Lacks' tumor cells managed to continually divide—creating an "immortal" cell line that went on to be used widely for research. Her family was not informed that her cells were being used for research. Lacks died eight months later.

  3. Today, protections exist for individual health privacy, such as HIPAA, and academic institutions have institutional review boards that must approve patient research. But individuals may not always realize they are signing broad permissions for research on their deidentified tissue or bodily fluid samples.

  4. 1440's Health & Medicine editor, Dina Fine Maron, sat down with bioethicist and lawyer Anna Mastroianni from the Johns Hopkins Berman Institute of Bioethics to find out if doctors can still use your tissue without asking in this roughly 15-minute interview.

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