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Who owns Henrietta Lacks’ cells?

Attendees admire a painting of Henrietta Lacks at HBO's The HeLa Project Exhibit For "The Immortal Life of Henrietta Lacks" on April 6, 2017 in New York City. A lawsuit from Lacks' descendants brings up a host of ethical questions.

Attendees admire a painting of Henrietta Lacks at HBO's The HeLa Project Exhibit For "The Immortal Life of Henrietta Lacks" on April 6, 2017 in New York City. A lawsuit against a pharma company from Lacks' descendants brings up a host of ethical questions surrounding medical profits, intellectual property and racial equity. Nicholas Hunt/Getty Images for HBO

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You’ve probably heard the story of Henrietta Lacks’ cells, which spawned more than 17,000 patents, a bestselling book and a made-for-TV movie starring Oprah. The cancer cells were harvested from Lacks’ cervix without her consent in 1951. According to Johns Hopkins, where doctors took the cells, the resulting “immortal” cell line, known as HeLa, has contributed to medical breakthroughs from research on the effects of zero gravity in outer space and the development of the polio vaccine, to the study of leukemia and the AIDS virus. 

Conspicuously missing from some of the stories about the legacy of Lacks’ cells, however, is the story of what has happened to her descendants. Many of them, including Lacks’ grandsons, haven’t seen any compensation or recognition as their grandmother’s cells rack up accolades and scientific discoveries. Now, they’re working with Christina Bostick, founder and managing director of Bostick Law Firm, who is trying to change the way we think about the cells’ autonomy by helping the cells sue for their own rights. She calls it creative litigation, and Marketplace host Kai Ryssdal discussed with her how it raises questions about what constitutes life. The following is an edited transcript of their conversation.

Kai Ryssdal: Why does this case matter to you?

Christina Bostick: You know, I am concerned about the exploitation of disenfranchised people in this country and how the law functions to disempower them from having a voice and from pursuing any concerns about their case. That’s not the way America’s supposed to work. You’re supposed to be able to utilize the legal system to find justice. And so, this was sort of right up my alley. It kind of just came to me that I should reach out to Ron Lacks, who is the grandson of Henrietta Lacks and see if there was anything I could do to help.

Ryssdal: We should say here, because it’s important: you, on behalf of the family, don’t seek ownership of these cells and this cell line but rather guardianship … explain that to me.

Bostick: Yes, there is some legal background that says you can’t really own a cell or something that has been disposed of from your body. So I think it’s more of an uphill battle to look at ownership of the cells or to try and patent a cell. And so a guardianship of the cell really says that the cell owns itself, that the cell has rights. This is a question that’s really unique: is a cell, in it of itself, life?

Ryssdal: Not to get cold blooded about this, but there’s millions — probably billions — of dollars in patents and intellectual property and all kinds of things that have come from this cell line.

Bostick: That’s right. There are many steps to this process, this is a big case. It’s very technical, very medical and scientific, and so some of those scientific aspects of things are going to have to be dealt with by experts. But my main concern is how do we get this case into court. Because so far, it hasn’t had a day in court. Right? And that’s primarily because there’s this thing called statute of limitations in the law, so you only get somewhere between one and maybe 10 years, depending on what the claim is, to file a lawsuit.

Ryssdal: If you prevail, and this goes the way you hope it goes for your clients, what does that look like?

Bostick: Well, right now, like I said, we are pursuing a guardianship petition. So the first step is, how can I get the cells themselves to pursue a claim? Then the next step is to sue Johns Hopkins in particular.

Ryssdal: Which is where Henrietta Lacks went in 1950-ish, right? To get this original treatment from which this cell line was derived.

Bostick: That’s exactly right. When her cells were taken and studied, the communications back and forth between her, the treatments … all of those things need to be legally investigated. And so the next step is sort of going through what we call the discovery process to figure out what information is out there and if there are any other litigants that we need to pursue.

Ryssdal: Hopkins, we should say, denies culpability here.

Bostick: Yes, that is my understanding. [They say] that the statute of limitations has run, there should be no ability to file a claim against them and that they did not take out a patent, which they weren’t legally authorized to do on the cells so they haven’t reaped a benefit. I think that that’s a little black and white and whether or not there has been a profit here is something that needs some investigating. 

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