The next time you start to grumble about the inconvenience of signing HIPAA consent forms at your doctor’s office or hospital admissions desk, think of the story of Henrietta Lacks.  

In 1951, this poor, black Virginia woman with cancer lost her privacy as well as control over her own body, when cells taken from her tumor were used for research without her knowledge. (She ultimately lost her life, too, but from the cancer and not  any wrongdoing on the part of her doctors or hospital.) As a result, we enjoy a host of beneficial drugs, therapies and interventions.  Think polio vaccine, in vitro fertilization and many drugs used in cancer treatment.

(To learn more, read Rebecca Skloot’s best seller The Immortal Life of Henrietta Lacks, or wait for the film based on the book being produced by Oprah Winfrey.)   

Everything on the plus side of this equation might not have happened if today’s regulations had been in place at the time to protect her privacy and ownership of her cells. But, that was not the case, and lack of regulation is no excuse for the injustices done to this woman and her family. We all owe the Lacks family a huge debt.  

Fortunately, today we have a host of rights related to health care. Maybe more than we even want. The rules protecting those rights are not perfect, but are evolving, little by little, in such a way that we can expect protection and power over our own bodies, even in a complex and overburdened medical environment.  

For a look at what we’ve learned from this fascinating tale, see The Lessons of Henrietta Lacks in Progress ezine. For FAQs on HIPAA, go here.