Doing Right

I recently reread a tribute to Howard W. Jones, Jr. – a “Pioneer of Reproductive Medicine” who died at 104. Jones pushed the boundaries of medicine, and was responsible for the first baby born through in vitro fertilization. But today’s email is not about Dr. Jones at all (despite all of the work he did) – but one of his patients, who arguably made a bigger contribution to science.

In 1951, an African-American woman showed up at Johns Hopkins Hospital because of a knot inside her stomach. At the time, Johns Hopkins was the only hospital in the area that treated black patients, and she had no other options for her care. On January 29th, 1951 she was treated by Dr. Jones who found a lump in her cervix and performed a biopsy, eventually diagnosing her with cancer. As part of her radiation treatment, cells were removed from her cervix (without her permission) and given to a Dr. George Otto Gey. In October of the same year, the woman died – a partial autopsy showing that the cancer had spread throughout her body. Her name was Henrietta Lacks, and she was just 31 years old.

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Unknown to Lacks, her cells did something remarkable – they could be kept alive and grow. At the time, cells created from other cells would only live a short period. Gey was able to isolate a single cell from Lacks’s tumor sample, and multiply it many times over. He named the line HeLa – and because the cells did not die after division, they could be used for conducting scientific experiments. And they were – to date, scientists have grown 20 tons of her cells, and there are close to 11,000 patents involving HeLa cells. Legendary medical advances in various fields have been made possible because of HeLa cells – including the polio vaccine, gene mapping, cancer research, AIDS research, human sensitivities to toxins, the list goes on and on.

Yet, it was not until the 1970s that Henrietta Lacks’s family learned about the removal and reproduction of her cells – they started getting calls to learn about the family’s genetics. By then, HeLa cells had been bought and sold in huge volumes, while her family was kept in the dark. Henrietta Lacks never consented to her cells’ being studied – she was poor, uneducated, and had no idea that the cells had been taken at all. Twenty years later, her family learned about it, and it took another 40 years until her family was included in the decision-making around the cells (the National Institutes of Health came to an agreement with the Lacks family in 2013).

Today, the story of Henrietta Lacks is used in countless classrooms at various levels of education to discuss important ethical issues related to privacy, science, race and class. A few years ago, I read the book The Immortal Life of Henrietta Lacks [highly recommend, if anyone is looking for a late summer read!]. And something struck me then about the story, and continues to stick out in my mind to this day. It is that doing good is not the same as doing right. Just because HeLa cells went on to save countless lives, it doesn’t negate the unethical way in which they were derived. Johns Hopkins Hospital, a reputable and distinguished institution, has profited billions of dollars from the HeLa cell line, yet descendants of Henrietta Lacks continue to live in poverty. It took 60 years for the medical community to involve Lacks’ family in decisions, as well as formally acknowledge her as the source of the cells. For me, it’s a reminder that even though Impact Network is “doing good”, we also have to make sure we are doing the right thing at every juncture – that we are doing right by our scholars, our families, and importantly, our broader communities.

-Reshma