HeLa Cells, Part 3: Consent v/s Greater Good

Going back to the beginning, remember how HeLa cells were obtained without patient consent, a standard practice of that time? Rebecca Skloot’s The Immortal Life of Henrietta Lacks explores the ethics of using cells/tissues for research.

Take the case of Ted Slavin. A hemophiliac born in the 1950’s, he had undergone multiple blood confusions. And as was the case then, much of those transfusions hadn’t been checked for diseases. Thus, he’d been exposed to the Hepatitis B virus again and again. And in response, his body was “producing something extremely valuable”: antibodies to Hepatitis B. Slavin contacted labs and pharma companies to ask if “they wanted to buy his antibodies”:

“They said yes in droves… Slavin was only the first of many who have since turned their bodies into businesses.”

Henrietta Lacks, the woman from whom the HeLa cells came, on the other hand, didn’t even know her cells were taken for research. We can’t right historical wrongs, but what should be the policy today on such matters?

Many argue against the permission for the Slavin approach. Why? It would “create chaos for researchers”. Having to pay for every such body cell/tissue would sound “the death knell” for a lot of research. Wouldn’t patients “block the progress of science by holding out for excessive profits, even with cells that weren’t worth millions”?

On the other hand, there’s the feeling of being cheated, and not just financially but emotionally. As one of Lacks’ surviving relatives said about the HeLa bomb:

“Her cells caused millions of dollars in damage. Seems like a bit of poetic justice, doesn’t it?”

So which is the right stance here? Should the greater good and cure that could come via research take priority over the consent issue even if the money goes to the pharma companies?

“How you should feel about all this isn’t obvious. It’s not as if scientists are stealing your arm or some vital organ. They’re using tissue scraps you parted with voluntarily. Still, that often involves someone taking part of you. And people often have a strong sense of ownership when it comes to their own bodies.”

And so Skloot suggests that perhaps we accept that we live in a world where healthcare is a commercial business and move onto the next question instead:

“Without commercialization, companies wouldn’t make the drugs and diagnostic tests so many of us depend on. The question is how we deal with this commercialization – whether scientists should be required to tell people their tissues may be used for profit, and where the people who donate those raw materials fit into the marketplace.”