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Who Owns Our Cells and Our Stories?

In an earlier post, I promised to write about the keynote speech, Rebecca Skloot did at the Women and Science Networking Event at ScienceOnline09. The speech was on “Women, science, and storytelling: The immortal life of Henrietta Lacks (a.k.a. HeLa), and one woman’s journey from scientist to writer “.

It was an interesting and disturbing presentation and I've been thinking about it a lot. Henrietta Lacks was a poor, African American woman who, in 1951, was dying of cervical cancer. Before she was treated with radiation, a sample of her cancer cells was taken. These cells, called the HeLa cells, continue to be used in labs the world over. Neither Mrs. Lacks, who died soon after, nor her family knew the cells were taken and nor did they know the huge impact those cells had on medicine.

Quoting from Skloot's 2000 article in the Johns Hopkins Magazine:

There are at least two issues that cases like Mrs. Lacks's raise," says Ruth Faden, executive director of the Johns Hopkins Bioethics Institute and the Philip Franklin Wagley Professor of Biomedical Ethics. "One is the question of consent, and the other is what, if anything, is morally or legally due to a person if something of commercial value is developed from their cells.

Faden went on to say

In terms of public policy, we're real clear that you can't buy and sell organs, that's illegal. But you can sell blood. You can sell human eggs and sperm. But you can't sell your kidney. And apparently, you can't sell your cells, you give those away.

So unlike Mrs. Lacks, you own your cells but like Mrs. Lacks you can't sell them. If you give them away, then they can be sold but you don't get any of the money and unless you've signed a very unusual contract, you have no say as to how those cells are used or who uses them. So today we sort of own our own cells; but if we want to try to make money off of them, we had better be scientists with a lot of equipment or have the money to hire others to do it.

But what about our stories? For the Lacks' family, history does seem to be repeating itself. Mrs. Lacks' daughter, Skloot explained, worked intensively with Skloot to tell her mother's story. Citing journalistic ethics, Skloot chose not to pay the family. From an ethnical, journalistic perspective, you can give your story away but they can't pay you for it. So today, like the cells, we sort of own our own stories; but if we want to try to make money off of them, we had better be writers with a lot of contacts or have the money to hire others to do it.

For both our cells and our stories there has to be a better way.


It was so great to meet you at ScienceOnline, Pat!

I had the same nagging concerns on hearing Rebecca Skloot's talk, but I didn't really know how to put them into words. It does seem wrong that for lack of education and sophistication the Lacks family remains poor and uneducated, rather than having gained at least something from their misfortune that has benefitted the whole rest of the world. And this is not without precedent. Ted Slavin was a hemophiliac who formed a company, Essential Biologicals that sold his blood, which had a high concentration of antibodies to hepatitis, and the blood of other people with rare conditions to commercial researchers.

It's a shame that Rebecca didn't talk about him, she wrote about him in her New York Times Magaazine piece about cell ownership, and it would have been nice to have had that other perspective included. But, time constrains...

I understand why you raise this concern, but it reflects a fundamental misunderstanding of journalistic ethics.

I've been a journalist for 30 years, exploring in-depth social and scientific issues for national magazines. It's a tenet within our profession--part of our most basic ethical code--that journalists don't pay for their stories. There's a good reason for this: The very act of paying corrupts the storytelling. It gives the subject an incentive to embellish the narrative in order to please the journalist.

I am a colleague of Rebecca Skloot and respect her work as a journalist. And I know that she has carefully walked the line between (1) not wanting to violate an ethical tenet and (2) not wanting to take advantage of the Lacks family. She struck an ingenious balance by creating the Henrietta Lacks Foundation, which will use some of the book's proceeds to provide scholarships for minority women scientists. Special preference will be given to young women from the Lacks family.

I think this is a generous use of Rebecca's money, but not a necessary one. Henrietta Lacks' cell were seized by researchers without her knowledge or consent. The Lacks family story was given freely to Rebecca, and for good reason: The family realized that this book will affirm their mother's legacy--will give her immortality by helping others recognize her contribution to biomedical research.

Journalists pay a key role in society by exposing social injustice. That's what Rebecca Skloot has done with her book. When we pay a scientist for testing soil samples in a contaminated community, is she expected to donate part of her salary back to that community? When we pay a teacher for educating young children, is she expected to sign over her paycheck to her students? In each case, the professional is drawing a salary for making things better. Likewise Skloot. She is making a modest amount of money by doing her work, which in turn is helping correct a miscarriage of justice. To expect her to give away her small paycheck is ludicrous. Creating such a standard will ensure that no progressive journalism will ever get written again.


Thank you for your thoughtful comment. Please know that I do not mean to imply that in any way Rebecca Skloot acted unethically. Indeed her concerns about what was fair to the family and what she could do to help the family and others, within journalistic ethics, was part of what prompted the post. I hope that my link, in the post, to 2008 report on "Chequebook Journalism" provides some background and context to her actions.

As the post indicates, I have some concerns. Why, for example, can I sell my blood, eggs and sperm (ok not my sperm but..), but not other pieces of my body? Why, as an expert witness, do I need to be paid, because otherwise my objectivity would be in question; but as an interviewee if I am paid, my objectivity would be in question?

I don't know the answers, but I do think the questions are worth asking; especially when they disproportionately impact those with less power and fewer resources.

Thanks acmegirl. I love that you are even more impressive in person than you are in blog. Your point "It does seem wrong that for lack of education and sophistication the Lacks family remains poor and uneducated, rather than having gained at least something from their misfortune that has benefited the whole rest of the world." is, I think, key.

Thanks for clarifying, Pat. I should note that you linked to an Australian report. U.S. journalists subscribe to a different code of ethics than Australians, and operate under a different legal system. I think it might be more useful to consult with a U.S. ethics handbook, such as Prof. Adam Penenberg's NYU Journalism For Students: Ethics, Law & Good Practice. In Chapter 6, Penenberg states, quite simply, "Most reputable news organizations do not pay sources for information. To do so can undermine the integrity of the information."

As far as selling things that issue from one's body, you are NOT allowed to sell organs in the USA. On the issue of organ donation from the dead, the surviving family cannot ask for money. Consent must be given, however. And as far as I know most people here don't sell their blood. They donate it to the Red Cross. Yet people do sell plasma, eggs and sperm. That is true. However, people do not own anything that is produced by others from their (now sold) eggs or sperm.

I'm not sure that any of these things are analogous to anything Rebecca is doing or add any insight to Rebecca's practice as a journalist. I think Rebecca has gone far beyond the call of duty in reaching out and helping rectify the wrongs that were done to the Lacks family by telling their story. As far as I know, no one else has tried doing that on the scale that she has. It is real hard work to write a book. Indeed, her spending the many years of research, writing, editing, fact checking, interviewing, building relationships and publicizing the very wrongs you are talking about--that's all a mitzvah in my book.

To imply that she somehow just swooped down and "took" their story and turned it overnight into a salable commodity--that is just wrong. She has put her own sweat, hard work and money into creating this book.

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