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: The Legacy of Henrietta Lacks and the Evolution of Informed Consent

The Legacy of Henrietta Lacks and the Evolution of Informed Consent

Content Specialist

For more than half a century, cells from an ordinary woman have made some extraordinary scientific discoveries, helping to aid research that ranged from the polio vaccine to Parkinson's disease. That woman was Henrietta Lacks and her tumor cells were the source of the HeLa cell line.


Despite the significant contribution to science resulting from her cells, neither Henrietta Lacks, nor her family, had any idea that her cells would be used for research. Thus, her case has led to countless discussions about informed consent and what should be done to protect the anonymity of other cells used for research purposes.  


A New Chapter in Her Story


The Henrietta Lacks case took an interesting turn on August 7, 2013 when the National Institutes of Health (NIH) announced that the full genetic information for HeLa cells would now be stored in a restricted NIH database. Researchers wishing to access the entire HeLa cell genetic sequence will have to submit an application to a committee-a committee that includes two descendants of Henrietta Lacks.


Who was Henrietta Lacks?

Henrietta Lacks was an African American woman of low-income and a sixth grade education. She was survived by five children and her husband when she died of an aggressive case of cervical cancer in 1951 at the age of 31. Until the 1970s, her husband and children would not even learn about HeLa cells, including the fact that cells were taken from Henrietta, without her knowledge, and used-repeatedly. The family has since then wrestled with the news of the existence of HeLa cells.


What are HeLa Cells?


HeLa cells are not only the first human cells that survived and multiplied in vitro, but they are also still used today to lead further breakthroughs in vaccination, cancer research, and genomics, among others. HeLa cells were derived from a biopsy of Henrietta lacks' cervical cancer cells.



History of Informed Consent


Although informed consent and anonymity are considered norms in present-day scientific research, this was not always the case. Informed consent as we know it today evolved after decades of legislation and policy reforms. Had Henrietta been alive today, her identity would remain private and efforts would be made to educate and inform her about research. She was afforded no such consideration and protection in 1951 because it simply wasn't a standard part of medical and research practice.  


Potential Reforms in Informed Consent


In March 2013, the issue of informed consent and full disclosure re-emerged for the Lacks family when a HeLa cell line's genetic sequence was published without prior authorization from Henrietta Lacks' descendants. This further compromised the family's privacy, as genetic information about Henrietta Lacks' cancerous cells-even generations into the cell line-provided information about her family's current genetic traits.


Soon after, NIH and the Lacks family entered into discussions that culminated in the agreement announced earlier this month. Kathy Hudson and Francis Collins of NIH explained this decision, including the need to reevaluate current standards of informed consent.


Although technology continues to advance, informed consent policies are not keeping up, leading to real bioethical implications. As generating and sharing genetically based data becomes prevalent, if an individual provides informed consent for his or her biological material to be used in research, he or she may not fully understand how his or her family's privacy could become compromised in addition to their own. The Lacks' are still dealing with the aftermath of HeLa, thereby demonstrating the importance of understanding how genomics are changing the scope of what it means to be informed and what it means to give consent.

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