Family Of The Immortal Woman, Henrietta Lacks, Has Reached An Agreement On How Her Cells Can Be Used

After sixty-two years, Henrietta Lacks and her family get the recognition they deserve. But is it enough to right the wrongs done?

Henrietta Lacks, the focus of a 2010 best-seller by Rebecca Skloot, found immortality when her cells were harvested just before her death from cervical cancer in 1951 at only 31 years old. The cells were found to stay alive even after multiple cell divisions. This led to a breakthrough in biomedical research because, up until that point, researchers spent more time keeping cells alive than actually performing experiments with them. The immortal “HeLa” cells allowed scientists to make major medical discoveries, including vaccines, HIV and cancer treatments, in vitro fertilization and now, with the mapping of the HeLa genome, the cells can and will lead to more discoveries that will affect science for years to come.

This woman has saved millions of lives

This woman has saved millions of lives

But those cells which have proven to be indispensable to medical research today were taken without her permission. Even her family was told nothing, and only discovered that the cells had been taken decades later after they started getting calls from researchers wanting to learn more about the family genetics. Soon, they found out that not only were Henrietta’s cells still alive, which was confusing and understandably difficult to comprehend, but that her cells were being bought and sold, and billions of dollars of profit were being generated by the research and drugs developed through their use.

Now, the National Institute of Health has announced that it has come to an agreement with the Lacks family. According to NBC News:

“Under a new agreement, Lack’s genome data will be accessible only to those who apply for and are granted permission. And two representatives of the Lacks family will serve on the NIH group responsible for reviewing biomedical researchers’ applications for controlled access to HeLa cells. Additionally, any researcher who uses that data will be asked to include an acknowledgement to the Lacks family in their publications.”

The family’s privacy will now be better protected, but while the Lacks family, especially Henrietta herself, will finally get the recognition and ethical consideration they deserve, they won’t see a dime of the profits made through HeLa cells. The family lived in poverty for many years, with no medical insurance, while Henrietta was posthumously making gigantic strides in medicine. The family has tried to recover some of the money involved, to no avail. As far as their worries about the HeLa genome being patented, those concerns were put to rest by the SCOTUS recently, which ruled that “naturally occurring genes could not be patented.”

Just my humble opinion, but the very least that can be done for the Lacks family is to care for the medical needs of Henrietta’s descendants as a way of acknowledging the importance the family has had to medicine.