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The Legacy of Henrietta Lacks

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Upholding the Highest Bioethical Standards

The story portrayed in The Immortal Life of Henrietta Lacks points to several important bioethical issues, including informed consent, medical records privacy, and communication with tissue donors and research participants. 

Johns Hopkins, and researchers and bioethicists worldwide, have learned a great deal from examination of these issues. We are deeply committed to ensuring the appropriate protection and care of medical information related to Henrietta Lacks and her family. In 2013, Johns Hopkins worked with members of the family and the National Institutes of Health (NIH) to help broker an agreement that requires scientists to receive permission to use Henrietta Lacks’ genetic blueprint, or to use HeLa cells in NIH funded research.

The committee tasked with deciding who can use HeLa cells now includes two members of the Lacks family. The medical research community has also made significant strides in improving research practices, in part thanks to the lessons learned from Henrietta Lacks’ story.

The table below demonstrates the significant shift in biomedical practices between the time when Henrietta Lacks was treated and today. 

 1950sCurrent Practices
Informed ConsentThere was no established practice for informing or obtaining consent from cell or tissue donors.Johns Hopkins and other medical research centers maintain strict patient consent processes for those who donate tissue and cellular materials for research.
Collecting Patient Samples for ResearchIt was common practice at Johns Hopkins to collect tissue samples from cervical cancer patients, regardless of race or socio-economic status.Today, any request for samples for research purposes would fall under regulatory and legal standards, and the oversight of an Institutional Review Board (IRB).
Using Patient Cells for ResearchThere were no local or national regulations on the use of cells in research.
It is standard practice to have an IRB examine every research study involving human participants before it is approved.
 
IRBs uphold strict standards of informed consent for all potential participants in human research involving cell or tissue donation.
Medical Records PrivacyPatients had no right to see or retain a copy of their medical records. No state or federal laws prohibited the sharing of medical record information in connection with research.Today patients have a right to see and have a copy of these medical records. Both state and federal laws regulate patient consent and the use and sharing of medical record information.
SegregationVery few leading hospitals treated African American patients.  Johns Hopkins Hospital was an exception, providing the same quality of care to both black and white patients. However, black patients were treated in segregated wards at the time of Henrietta Lacks and for many years thereafter.Johns Hopkins began desegregating in the 1950s with full integration of ward services in Surgery in 1959.  By 1973, all inpatient services were desegregated.