When you’re a poor black woman who died 50 years ago:
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.
[…]The agreement, which does not provide the family with the right to potential earnings from future research on Ms. Lacks’s genome, was prompted by two projects to sequence the genome of HeLa cells, the second of which was published Wednesday in the journal Nature.
What benefit does the Lacks family gain from this? Privacy. After all, sequencing the genome would reveal nearly the entire family’s genetic history, and expose her descendants to identification when they obtain genetic tests for whatever reason.
For instance, Lacks died of cervical cancer clearly contracted from the HP virus. Not that anyone should be ashamed of this, but it’s not something that should be publicized unless the heirs agree to.
But think about this: HeLa cells were vital to the development of the polio vaccine (admittedly, not exactly a profit enterprise originally), in vitro fertilization, cloning and mapping the human genome, among other important – and profitable – medical advances. I think the Lacks’ family is entitled to some reparations for that, don’t you?