Jedi by Knight

February in the US is Black History Month.  In my mind, there are kind of two parts to this.  The first is celebrating the many accomplishments of African-Americans, from MLK Jr. and Harriet Tubman to these awesome women in STEM.  I also loved these photos floating around on Facebook:

The second part is remembering the many injustices and struggles that African-Americans have undergone during our country’s history.  In the face of these wrongs, we as a culture can:

• bring them to light
• try to right the wrongs as much as possible
• take steps to make sure they don’t happen again in the future

That brings me to the story of Henrietta Lacks, told so compellingly in the 2010 book The Immortal Life of Henrietta Lacks by Rebecca Skloot (which I wrote about briefly here).

In 1951, Lacks presented at Johns Hopkins Hospital with cervical cancer; as a poor, African-American woman and mother of five, in that time and place her medical treatment options were limited, and she soon succumbed to the disease.  During her treatment at Johns Hopkins, samples of her tumor cells were removed without her knowledge or permission, which was a common practice at the time.

These cells were cultured in vitro (basically, grown in dishes in a special nutrient broth) in the lab of Dr. George Gey.  The researchers soon discovered that, unlike previous attempts to culture human cells, Lacks’ cells did not die off after dividing a few times.  They kept growing and dividing; they were the first human immortal cell line and were subsequently named HeLa cells.

HeLa cells grew so well, in fact, that they began contaminating other cell lines.  Researchers began looking into the genome (genetic data) of Lacks’ cells and tracked down her family, who were stunned to learn that a piece of their mother, who passed away soon after giving her tumor sample in 1951, was somehow still alive in scientific labs all over the world.

Can you imagine what that revelation must have been like for the Lacks family?  Especially since their inadequate public science education barely prepared them to understand concepts like “cells” and “culture” and “genome.”

Still, the Lacks family is justly proud of Henrietta’s contribution to science.  HeLa cells have been used in a huge number of important experiments, including Jonas Salk’s development of the polio vaccine.

The Immortal Life of Henrietta Lacks, as well as numerous journalistic articles (and blog posts), have done a great deal to bring the story of Henrietta and HeLa cells to light.  But this fame is a double-edged sword: the privacy of the Lacks family has been irrevocably compromised.  Their family history has been thrust into the national spotlight, and, since the DNA of HeLa cells has now been sequenced, even pieces of their genetic code have been analyzed.

The Lacks family does now have some say in how HeLa cells can be used.  In 2013, the family reached an agreement with the National Institute of Health (NIH) to give family members an advisory role regarding which researchers can access the HeLa genetic data.  (These researchers must also acknowledge the contribution of Henrietta and the Lacks family in their publications.)  

But they have never seen, and likely never will see, any of the money that derives from the multitude of discoveries and nearly 11,000 patents relating to HeLa cells.  Though financial compensation has never been their goal, and from a practical standpoint it would be nigh impossible at this point, it hardly seems fair that others will continue to profit from use of their ancestor’s cells while they do not.  

Clearly the only way to really fix this situation involves a time machine.  (Sadly, all the sci-fi stories I read tell me that time travel causes more problems than it solves.)  

But seriously, if the Lacks family is now satisfied, let’s look forward: how can we prevent a case like Henrietta Lacks’ in the future?

Informed consent has been a standard in medical ethics for decades now.  Researchers must ask permission from their subjects before doing any human research.  (At least, they do if they want federal funding and to be published in reputable journals.)  The federal government is currently revising these regulations, referred to as the Common Rule.  

Rebecca Skloot and others favor the inclusion of a requirement for “broad consent,” so that even anonymous, “non-identifiable” samples require some general consent before experimental use.  (To be fair, samples today are coded so much better than simply using patients’ initials like “HeLa.”  But it is still technically possible to re-identify some samples through genetics, etc.)

Critics argue that this will just result in more paperwork, bogging down science while throwing another paper at patients to be signed without real understanding.  I am a practical person, but I refuse to build science, no matter how great, on the backs of the uneducated and disenfranchised.  While another case like Henrietta Lacks’ is unlikely, public education about tissue research is critical to our ability to continue to do great science while respecting human dignity.

Henrietta Lacks is still changing the face of science today in many ways, whether it’s regarding cancer treatment or medical ethics.  I encourage you to read more at the links throughout this post, and I encourage respectful discussion in the comments.