Rabin Martin

Henrietta Lacks.

Most people have never heard of Henrietta Lacks. Yet, for more than 60 years, her cells have been used to help save countless lives.

Henrietta’s cells (more commonly known as HeLa cells), were taken without her consent when she was being treated for cervical cancer and were considered to be immortal; unlike most other cells, they lived and grew continuously in culture. Henrietta Lacks is the woman behind the cells that revolutionized the medical field – helping develop the polio vaccine, cloning and numerous cancer treatments.

Last week, the Rabin Martin Book Club discussed the impact of HeLa cells and the ethical issues related to informed consent in medical practice. As a striking contrast to the immeasurable good made possible through research on HeLa cells, The Immortal Life of Henrietta Lacks offers a poignant depiction of the deep injustices she and her family experienced.

Since the discovery of HeLa cells, they have been bought and sold for incalculable profit, yet Henrietta’s family could never afford consistent health insurance despite suffering from chronic illnesses. While Henrietta Lacks’ cells were taken without her informed consent when she died in 1951, it wasn’t until 1971 that her family even became aware that her cells existed, and not until very recently that they were granted any real say as to how researchers used her cells.

The story of Henrietta Lacks is a prime example of the ethical tradeoffs the scientific community grapples with in pursuit of the common good, but it also signaled a turning point. It revealed a tangible opportunity for the public to voice concerns and demand appropriate measures be taken to learn from past mistakes.

In an act of uncanny timeliness, during the week of our discussion, three articles were published in top-tier news outlets about Henrietta’s cells. The rights and privacy of the Lacks family were formally addressed after German researchers published the full genome sequence of a HeLa cell line (which reveals all genetic predispositions) on a public database, without consulting the family. While their actions were not illegal, the controversy resulting from this breach of privacy prompted long overdue action on behalf of the National Institutes of Health (NIH). For the first time, it was decided that before any NIH-funded research on HeLa cells can be published, it needs to be approved by a board that includes two Lacks family members.

Although it took more than 60 years to fully acknowledge the origin and history of Henrietta’s cells, it is reassuring to see that efforts are now being made to ensure that her family’s best interest remains at the forefront of future research. To learn more about the incredible legacy of Henrietta Lacks and the ongoing efforts to safeguard her family’s privacy, read these recently-published pieces in The New York Times, The Guardian and NPR.