By Ruth Faden

In 1951, a young mother of five died of cancer at Johns Hopkins Hospital in Baltimore, MD. Though she received the best care available at the time, she died of her aggressive disease at 31.  In the decades since, the tragedy that struck Henrietta Lacks and her family has been a modern medical miracle: cells taken from her tumor, without her knowledge or consent, became the first human immortal cell line, contributing to medical research that has saved countless lives in the form of the polio vaccine and treatments for the flu and Parkinson’s Disease. It has even helped to create new life, as scientists working with the cells learned the technique used in in-vitro fertilization.

The person behind the extraordinary HeLa (‘He’ for Henrietta, ‘La’ for Lacks) cells was unknown, or misrepresented as Helen Lane.  When Mrs. Lacks’ identity was made public in a medical journal, it was without the knowledge or consent of the Lacks family.  Indeed, the Lacks family knew nothing of the extraordinary benefits that were resulting from their mother’s cells for many, many years.  Effectively no one in the scientific community reached out to the Lacks family; they had no involvement in, and virtually no contact with, the science that was advancing around them.

All that changed last week. The Lacks family and the National Institutes of Health (NIH) announced a new chapter in Henrietta Lacks’ never-ending story – an agreement on controlled access to genomic sequence data of HeLa cells. For the first time ever, the Lacks family will have a formal role in the science that continues to progress using HeLa cell lines. The new policy establishes a six-member committee to review applications to conduct research with HeLa genome data, including two members of the Lacks family and myself.

The policy comes five months after the publication of the complete genome of a HeLa cell line in an open-access database by a German research team. The Lacks family, once again, knew nothing about this groundbreaking research.  Yet, the genome data that was published contained information relevant to the personal health and privacy of Mrs. Lacks’ descendants – whose names and city of residence are now known to millions as a result of the bestselling book The Immortal Life of Henrietta Lacks.  After a history of not being informed of the existence and importance of HeLa cells, and of having personal family medical records published without permission, this was understandably upsetting for the Lacks family.  The genome was fairly quickly taken down, but a Pandora’s box had been opened; how should research with HeLa genome data ethically proceed?

Rebecca Skloot, the author of The Immortal Life of Henrietta Lacks who is close with the Lacks family, called me to consult with them on a way forward. The NIH, the journal Nature, and a research team at the University of Washington led by Jay Shendure had agreed to hold publication of another HeLa genome sequence until an agreement with the Lacks family could be reached.

What followed is in important respects unprecedented in the annals of bioethics and science.  Over several dinner meetings a small group of us met to discuss the implications of HeLa genome sequence data for the family and for science, as well as what options were available going forward.   At the heart of these meetings were members of the Lacks family and the Director of the NIH, both working earnestly to understand each other and to find a way forward that would be acceptable to all concerned.  It was extraordinary.

But what was and is most amazing to me is the Lacks family themselves.  This really is a family- children, grandchildren and great-grandchildren of Henrietta Lacks who are committed to honoring her extraordinary legacy, and committed to each other.  I have never met a family more devoted, or more public-spirited and generous, than the Lackses.

In our conversations it was clear the family wanted important genomic research to move forward, but in a way that was ethical and respectful of Henrietta Lacks and her descendants.  I believe this new policy fulfills those dual goals.  At long last, the Lacks family will have a formal say in HeLa research, in sharp contrast to past experience.

At the top of the list of what matters about this historic agreement is the requirement that all NIH-supported publications involving HeLa genome data will now have to include a formal acknowledgement, a statement of gratitude, to Henrietta Lacks and to her family.

It’s a public tribute long overdue to a woman and a family who have not only contributed to better health for so many, but who have also helped us all to see that ethics and science, respect and progress, can easily coincide.

faden100Ruth Faden is the Wagley Professor of Biomedical Ethics and Director of the Johns Hopkins Berman Institute of Bioethics.  She is the co-author with Madison Powers of Social Justice: The Moral Foundations of Public Health and Health Policy.

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Ruth Faden

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