Henrietta Lacks in the News
In my new book, FOR THE GOOD OF MANKIND? THE SHAMEFUL HISTORY OF HUMAN MEDICAL EXPERIMENTATION, I discuss the case of Henrietta Lacks, a poor African American woman who died of cervical cancer in 1951. And today, over 60 years later, Lacks is back in the news again. This time, family members learned that scientists at the European Molecular Biology Laboratory had published the family’s genome on line, and that the National Institute of Health (NIH) was poised to reveal similar information in a research paper. Both organizations did not get authorization from the Lacks family, whose descendants were concerned that others would have access to private genetic information.
As the New York Times aptly stated in an editorial today, this failure to respect the family’s privacy is just “another twist in the saga of Henrietta Lacks.” Doctors first extracted cells from Lacks’s tumor without her permission, and then began to grow a long line of cells that continue to thrive and multiply to this day. The cells, dubbed HeLa cells, have been used in countless research studies, have helped to develop many vaccines and treatments for cancer, and have even rocketed into outer space. The tragedy of the Lacks story, which is well-documented by science journalist Rebecca Skloot in her book, The Immortal Life of Henrietta Lacks, is that the family never knew that the cells were being used to benefit science and never received money from the companies that profited.
Now, at long last, the Lacks family’s privacy will be honored. The NIH has agreed to limit NIH-financed experiments on the Lacks genome (not experimentation with HeLa cells). They also appointed two family members to a committee that will okay any research. Hopefully, all researchers, even those not funded by the NIH, will follow the guidelines.
Although the Lacks saga is one that dates back for decades, the privacy issues surrounding publication of an individual’s genome are very real today, particularly when so much information is just a Google search away. Researchers must balance the need to study the genome for scientific purposes with individual rights to privacy.
