By Seraya Maouche, posted on August, 1st 2016.
Henrietta Lacks was an African-American woman whose cells were removed and used in biomedical research without her permission or knowledge. She died on October, 4th, 1951 at the age of 31.
Lack’s cancerous tumor was biopsied during her treatment for cervical cancer at the Johns Hopkins Hospital (Baltimore, Maryland, U.S.) . Her cells that were cultured by George Otto Gey, are the origin of the first human immortal cell line, now known as the HeLa immortal cell line, which helped to make huge medical advances. These cells are still used for medical research.
Her life is summarized in this video with an interview with Dr. Francis Collins of the National Institutes of Health:
Ethical issues raised
Neither Henrietta Lacks nor her family members gave consent that the cells taken from a biopsy before her death could be used for research. The cells were later commercialized .
Her genome had been sequenced and made public. A german research group published, in March 2013, the genome of a strain of HeLa cells without permission from the Lacks family. After complaints, these genomics data have been removed from public databases.
« It was shocking and little disappointing, knowing that Henrietta’s information was out there, » Whye said. « It was like her medical records are just there to view with the click of the button. They didn’t come to the family. … It was like history was repeating itself. »
In 2013, the NIH has made a new agreement for better controlled access to HeLa cells. Under this agreement, Lack’s genome data will not be publicly available, but accessible only to those who apply for and are granted permission. In addition, two representatives of the Lacks family will serve on the NIH group responsible for reviewing biomedical researchers’ grants .
« The circumstances surrounding the HeLa cell line are unusual because the donor of the original cells—the late Henrietta Lacks—had been identified in scientific journals and eventually made famous by a BBC documentary, newspaper articles, and a bestselling book. As a result, Ms. Lacks and many of her descendents are known by name to millions of people. It quickly became apparent that the publicly posted HeLa genome data and what it might reveal about Ms. Lacks’ disease risks could have implications for her descendants. Consequently, the data were removed from public view.
Because of the unique concerns posed by the HeLa genome data, NIH and the Lacks family worked together to develop a solution that allows researchers access to this valuable resource while respecting the wishes of the family. That historic agreement and the collaborative discussions that made it possible are outlined by me and Kathy L. Hudson, Ph.D., NIH Deputy Director for Science, Outreach, and Policy, in the Nature Comment below. »[3-4]
– Francis S. Collins, M.D., Ph.D.
Director, National Institutes of Health
In this article, by Christina Daulton from the NIH, a nice timeline has been produced to summarize the main events in the life of Henrietta Lacks .
The immortal life of Henrietta Lacks
Rebecca Skloot’s book, The Immortal Lives of Henrietta Lacks, tells the story of Henrietta Lacks, and HeLa ells. This book was named a best book of the year by more than 50 media.
- Batts, Denise Watson (2010-05-10). « Cancer cells killed Henrietta Lacks – then made her immortal ». The Virginian-Pilot. pp. 1, 12–14. http://hamptonroads.com/2010/05/cancer-cells-killed-her-then-they-made-her-immortal. Retrieved 2016-07-31.
- Ritter, Malcolm (August 7, 2013). « Feds, family reach deal on use of DNA information ». CBS Baltimore. http://baltimore.cbslocal.com/2013/08/07/feds-family-reach-deal-on-use-of-dna-information-from-baltimore-woman/. Retrieved August 1, 2016.
- Art Caplan (3013-08-07). « NIH finally makes good with Henrietta Lacks’ family — and it’s about time, ethicist says ». http://www.nbcnews.com/health/nih-finally-makes-good-henrietta-lacks-family-its-about-time-6C10867941. Retrieved 2016-07-31.
- Francis S. Collins (2013-08-07). « The HeLa Genome: An Agreement on Privacy and Access ». https://www.nih.gov/about-nih/who-we-are/nih-director/statements/hela-genome-agreement-privacy-access. Retrieved 2016-07-31.
- Hudson, K.L., Collins, F.S. Family Matters. Nature. 500, 141-142 (2013)
- Christina Daulton (2014-07-02). « We Speak Your Name: Brooklyn community celebrates Henrietta Lacks ». August, 1st, 2016. https://www.genome.gov/27558032/we-speak-your-name-brooklyn-community-celebrates-henrietta-lacks/. Retrieved 2016-07-31.