What Business Can Learn from the Henrietta Lacks Story
Finally, I read The Immortal Life of Henrietta Lacks by Rebecca Skloot. If you haven’t, you should: It will make you think.
Skloot’s book presents a number of ethical conundrums around who owns our tissues and fluids once they leave our bodies, how others use these materials and how they should use these materials, and the nuances of patient consent and comprehension.
First, the backstory:
Henrietta Lacks died of cervical cancer in 1950. Henrietta’s cells, which her physician removed during diagnosis, grew in culture and continued to multiply from the early 1950s to the present day, making it possible for science to develop innumerable medical advances, from vaccines for polio to new pharmaceuticals and treatment protocols.
Henrietta’s family learned about the use of her cells years later. Mostly uneducated, they couldn’t understand the concept of cultures and cloning; their limited understanding made the notion frightening. If they went to Europe, they wondered, would they see clones of Henrietta? Had science trapped uncountable copies of Henrietta in laboratories across the world to perform trials on them? Further, hadn’t science taken advantage of the Lacks family by experimenting on Henrietta’s cells without consent, gaining from the cells’ proliferation, and sharing not a penny of the proceeds?
I love science. And I love business. And as I read Henrietta’s story, I saw new parallels.
Let’s start with privacy in the Internet era.
We sign consent forms not fully understanding what they say—and if we do read and comprehend them, we have no option other than to acquiesce if we want to use the product or service. Companies employ provided and gathered information about us however they like without our full control or understanding. They use it to better their businesses—and in the cases of companies we patronize, we may not mind their using our data to adapt to our preferences. Yet we might mind them selling our information and using it to thwart our best interests.
Unethical? Evil? We can’t see this issue in black and white.
Bullying people to acquire their information and their consent to use it in any way a business desires seems like a no. Yet using the data people voluntarily provide to improve through innovation, business development and sales, and even as sources of alternative revenue generation seem okay—provided a business has made how it intends to use gathered information clear and gives people the option to withhold data and opt out of its possible uses.
For Henrietta’s family, the opportunity to consent had long passed. Yet when scientists helped the Lacks family understand what happened with Henrietta’s cells, the family gained peace. They didn’t demand money. Actually, they felt a modicum of pride that Henrietta’s cells had helped millions of people. They asked only that she receive recognition for her contribution to medicine.
As with many aspects of our lives, comfort, peace, and harmony come from having control and autonomy—a “say”— combined with knowledge, awareness, and understanding. With the Lacks family, understanding changed everything. Of course.
In business, where could you better add clarity?