Issues of ethics, privacy, socioeconomics, racism, research, science, consent, justice, and voice are all present in this case. Henrietta Lacks was a poor black woman with dying from cancer in 1951. Without her consent, some of her cancer cells were removed, cultured, and have subsequently been used in many thousands of research studies (and resulting in profits and careers for scientists and corporations). Her family only found out about the widespread use of her cells when researchers approached them, asking for blood samples. This story is chronicled in Rebecca Skloot‘s 2010 best-seller, “The Immortal Life of Henrietta Lacks.”
From the NYTimes article: “Henrietta Lacks was only 31 when she died of cervical cancer in 1951 in a Baltimore hospital. Not long before her death, doctors removed some of her tumor cells. They later discovered that the cells could thrive in a lab, a feat no human cells had achieved before.
Soon the cells, called HeLa cells, were being shipped from Baltimore around the world. In the 62 years since — twice as long as Ms. Lacks’s own life — her cells have been the subject of more than 74,000 studies, many of which have yielded profound insights into cell biology, vaccines, in vitro fertilization and cancer.
But Henrietta Lacks, who was poor, black and uneducated, never consented to her cells’ being studied. For 62 years, her family has been left out of the decision-making about that research. Now, over the past four months, the National Institutes of Health has come to an agreement with the Lacks family to grant them some control over how Henrietta Lacks’s genome is used.”
- Henrietta Lacks formally recognised as source of HeLa research cells (theguardian.com)
- NIH finally makes good with Henrietta Lacks’ family — and it’s about time, ethicist says (nbcnews.com)
- Family Of The Immortal Woman, Henrietta Lacks, Has Reached An Agreement On How Her Cells Can Be Used (addictinginfo.org)
- Some dignity for Henrietta Lacks (stuff.co.nz)
- Thoughts on Henrietta Lacks and The Forgotten in Psychiatry (cariliterally.wordpress.com)