The Immortal Henrietta Lacks

Henrietta Lacks was born in 1920 in Roanoke, VA.  When she was 4 years old, her mother died and Henrietta was sent to live with her grandfather.  Her education stopped when she was in the sixth grade.  She had her first child when she was 14 years old.

When Henrietta was 31 years old, she went to Johns Hopkins because she felt a mass in her womb.  Johns Hopkins was the only hospital which would accept African American patients.  Henrietta was found to be pregnant.  Following the delivery of her child, Henrietta suffered a major hemorrhage.  During the investigation of the cause of the hemorrhage, two tissue samples were taken from her cervix.  One was found to be cancerous.  The cancerous tissue was given to a cancer researcher.  Henrietta died soon after and was buried in an unmarked grave.

The cancer researcher discovered that Henrietta’s cancer cells were unique in that they reproduced very rapidly and could be kept alive long enough for cancer research.  Henrietta’s cancer cells were mass produced and distributed to biomedical research facilities around the country.  Jonas Salk used her cells in developing the polio vaccine.

Henrietta’s cells have led to 10,000 patents.  No one in her family was even aware of the continued use of her cells.  Certainly they never gave permission for their use, which wasn’t required at the time.  Nor did they benefit from its commercial use.  To make matters worse, the DNA sequence of a strain of Henrietta’s cells was made public.  In a precedent setting case, the California Supreme Court decided that individuals had no rights to their discarded tissue and cells.

The Health Insurance Portability and Accountability Act (HIPPA), passed into law in 1996, put a stop to the unconscionable use of a person’s health information without their consent.  It seems unbelievable that it took nearly 2 decades from the time Henrietta’s descendants discovered that her cells were being used until there was legislation passed to protect an individual’s healthcare privacy.

Privacy is a fundamental right, but it is one that is being challenged continuously.  Technology is the main threat to privacy today.  Hackers can seemingly access private information with little difficulty.  But individual’s personal decisions are also being threatened for exposure in such areas as sexual identity, reproductive freedom, and national security.

Just imagine how we might decide where the boundaries should be for personal privacy.  And how does the right to privacy get balanced with the right to free speech?  Privacy is something that when lost, may never be regained.  What type of redress should be available to individuals who have had their privacy invaded?

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“Privacy is dead, and social media holds the smoking gun” – Pete Cashmore (CEO of Mashable)

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