For those who do not know Henrietta Lacks was a tobacco farmer from Virginia who found she had cervical cancer at the age of 30. Though she received treatment and blood transfusions, she died of uremic poisoning on October 4, 1951, at the age of thirty-one. A researcher by the name of George Otto, received a sample of cells from Henrietta’s tumor, without her knowledge, and discovered that her cells could be kept alive and grow and he was able to propagate her cells into the first immortalized human cell line.
The cells were essential in developing the polio vaccine, they were sent into outer space on the first space missions to see the effects zero gravity. Additional landmarks have been achieved through the use of this cell line including cloning, gene mapping and in vitro fertilization.
Henrietta Lacks and her family never gave permission to harvest or use her cells. In fact permission was neither sought nor required. The cells were subsequently commercialized, and family medical records were published without family consent. In March 2013, German researchers published the genome of a strain of HeLa cells (as they were named) without permission from the Lacks family. The issue of compensation to the family in this case was effectively put to rest in a California Supreme Court ruling that determined that no one can claim the right to share in profits from the commercialization of anything developed from discarded body parts.
From Reuters:
Information about the most famous and valuable human cells in the history of science is about to become a little harder for researchers to get.
Henrietta Lacks is pictured in this undated handout photo. The National Institutes of Health announced on Wednesday that it has reached an agreement with the family of the late Henrietta Lacks, the impoverished African-American woman whose cancer cells scientists took without her permission 62 years ago, to control access to those cells' genetic information. Under the agreement, two descendants of Lacks', will serve on a working group that will decide which biomedical researchers will be allowed to access the complete genome data in cells derived from her cervical tumor, called HeLa cells.
Henrietta Lacks is pictured in this undated handout photo. The National Institutes of Health announced on Wednesday that it has reached an agreement with the family of the late Henrietta Lacks, the impoverished African-American woman whose cancer cells scientists took without her permission 62 years ago, to control access to those cells' genetic information. Under the agreement, two descendants of Lacks', will serve on a working group that will decide which biomedical researchers will be allowed to access the complete genome data in cells derived from her cervical tumor, called HeLa cells.
The National Institutes of Health announced on Wednesday that it had reached an agreement with the family of the late Henrietta Lacks, the African-American woman whose cancer cells scientists took without her permission 62 years ago and used to create an endlessly replicating cell line now used in countless labs worldwide.
Under the unprecedented pact, a grandson and a great-granddaughter of Lacks, whose story was told in the 2010 best-selling book "The Immortal Life of Henrietta Lacks," will help decide which biomedical researchers will have access to the complete genome data in cells derived from her cervical tumor, called HeLa cells. That data - which can be used to infer medical and other information about Lacks' family - will be stored in a secure, NIH-controlled database.
Personally I am disturbed by the lack of control we still have over our own genes. It seems contrary to every moral law that somehow others can profit from what makes us uniquely us, while disregarding that self same person. I am no scholar of history but it is clear that our laws have developed over hundreds of years to protect wealthy land owners, and now corporations. I am perturbed by the idea that someone could hold some part of me hostage indefinitely while profiting from the theft.
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