HeLa-cious coverage

Media overlook ethical angles of Henrietta Lacks story

A New York Times bestseller about the most widely used human cell line in biological research has inspired wide-ranging debates about scientific ethics in schools, town halls, and other civic venues nationwide…except one very important venue: the news media.

Published in 2010, The Immortal Life of Henrietta Lacks, by Rebecca Skloot, tells the story of a poor, black woman whose cells were harvested without her knowledge from a cervical tumor shortly before she died in a Baltimore hospital in 1951. They were the first human cells to be successfully cultured in a laboratory, and they’ve been replicating ever since, and contributing to an enormous amount of research, including development of the polio vaccine and other medical treatments.

The book rose to fame, however, by highlighting, as Skloot’s website puts it, “the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we’re made of.” Over the last three years, Skloot has been on the road almost constantly, discussing those issues with hundreds of audiences and interviewers around the country.

Yet, for all that, the press continues to overlook ethical angles when reporting on biological research. Take the coverage of the March 11 announcement that scientists at the European Molecular Biology Laboratory (EMBL) had, for the first time, sequenced the full genome of a “HeLa” cell line—named for its unwitting progenitor—and published it online.

Anticipating questions about the Lacks family’s privacy, the press release assured readers, “No, we cannot infer anything about Henrietta Lacks’ genome, or about her descendants, from the data generated in this study,” but experts quickly took to social media to question the veracity of that claim.

On Twitter, Yaniv Erlich, a geneticist at the Whitehead Institute for Biomedical Research, called the statement a “lie,” and Jonathan Eisen, an evolutionary biologist University of California, Davis, wrote that he was “a bit stunned that the people publishing the HeLa genome appear to not have gotten consent from the family.”

Journalists, on the other hand, seemed not to notice, or even consider, such concerns. Instead, readers got atrocious reports, like one from Gizmodo that misrepresented the very premise of EMBL’s work by suggesting that it somehow invalidated all of the research based on HeLa cells.

The project revealed the full extent to which HeLa cells are different from normal cells, with “widespread abnormalities in both the number and structure of chromosomes.” But scientists already knew that the cells, being cancerous, had undergone numerous mutations as they replicated over the course of decades. That didn’t make them any less useful, though, and EMBL’s data existed in smaller chunks in other databases. The full genome merely promised to a useful reference for future research.

EMBL’s paper, published the journal G3: Genes, Genomes and Genetics, and the press release, sort of suggested that scientists had not been accounting for the abnormalities of HeLa cells (a later blog post by one of the researchers promised that they meant no such thing), but where the group undoubtedly erred was the declaration that nothing could be learned about the Lacks family from its genome.

In an interview, Skloot, who had joined in the social-media discussion, called the episode “yet another example of scientific miscommunication with the press and the public.” She was shocked that not a single reporter had clued into the ethical issues on his/her own.

“I kept thinking, there’s got to be a journalist out there who’s going to ask this question,” she said.

Partly out of frustration with the fact that none did, Skloot wrote an op-ed for The New York Times that ran in the March 23 Sunday Review under the headline, “The Immortal Life of Henrietta Lacks, the Sequel.” It confirmed that EMBL scientists had not consulted Lacks’s family before publishing the HeLA genome, and explained that, “After hearing from the Lacks family, the European team apologized, revised the news release and quietly took the data off-line.”

EMBL deleted that assurance that nothing could be learned about the Lacks family from the HeLa genome, and added the acknowledgment that:

Comparisons to common genetic variants in human populations today allow one to infer variants likely to have been present in the donor’s genome, although such inferences can only be made with a certain likelihood.

In her op-ed, Skloot faulted the scientific community for being “surprisingly silent on the issue,” with the exception of those on Twitter. But in our interview she said the first draft had contained a paragraph criticizing the news media as well. Editors cut it for space, but Skloot was hoping some would “read between the lines and see that it was also aimed at journalists.”

Indeed, the saga typified the criticism in a recent analysis of coverage of Skloot’s book. Matthew Nisbet and Declan Fahy, professors of communications at American University (who have contributed to CJR), scanned 125 articles and transcripts—mostly book reviews and author interviews and profiles, but also some news stories, features, editorials, and op-eds—for nine different ethical themes, and found that:

The informed consent theme [i.e., obtaining permission to use a person’s genetic information in research] dominated media discussion, with almost 39.2 percent of articles/transcripts featuring the theme as a major focus and 44.8 percent emphasizing the theme as a minor focus.

Most other considerations, especially those related to oversight and regulation, got short shrift, however, leading Nisbet and Fahy to conclude that:

The relatively narrow focus on informed consent in the media discussion generated by Skloot’s book may limit the ability of ethicists and advocates to elevate attention to donor control, compensation, patenting, privacy, and other ethical issues.

The report granted that book reviews and author interviews are not, by their nature, the best place to launch in-depth investigations of complex topics like bioethics and privacy. The problem, as they described, is reporters’ inability to take a cue, and the fact that:

The book has yet to prompt journalistic investigations of informed consent policies and practices, has resulted in very few backgrounders on the ethical and policy issues involved, and has generated little attention to the global growth of biobanks specifically.

Biobanks, which are repositories of tissues, fluids, and other biological samples for use in research, are a growing industry worldwide, the report argued, but oversight and consent policies haven’t kept pace with technological advancements that have allowed scientists to glean new information from old samples.

As Francis S. Collins, the director of the US National Institutes of Health, told Skloot for her Times op-ed, “This latest HeLa situation really shows us that our policy is lagging years and maybe decades behind the science. It’s time to catch up.”

For her part, Skloot said she agreed with a lot of what Nisbet and Fahy found, although she did get into a minor dispute with them on Twitter right after their report was published in February in the journal BMC Medical Ethics. Their paper stressed that, “Relative to understanding the direct impact of Skloot’s book on public judgments, our findings should be interpreted cautiously,” but a few sentences, particularly the title, suggested they were making stronger conclusions about the book’s social influence.

The ethical debates outside the news media have been far broader and deeper than those within, Skloot said. In fact, when she speaks in schools, libraries, bookstores, community centers, churches, and other forums, she tries to cover important points that people wouldn’t have seen in newspapers or heard on the radio.

“A lot of the questions that people ask have to do with things that people have read in the press, and confusion over it, or assumptions they’ve made because of it,” she said. “So, in my talk, I don’t criticize the press, but I try to incorporate answers to questions that I know have been raised.”

Of course, Skloot isn’t blind to the fact that a lot of people are turning out to hear her speak because of all the media attention to her book.

“It got such wide coverage in the press, and I’m very grateful for that,” she said. “If the basics of the story hadn’t been out there, a lot of people wouldn’t have learned about it, and we never would’ve been able to have these more detailed conversations.”

The problem is not that coverage of her book was poor, Skloot explained, or that there should be more of it. Like Nisbet and Fahy, she’s disappointed that it hasn’t encouraged many follow-on investigations or established ethical concerns as a reflexive point of inquiry for journalists covering biological research.

HeLa cells are not, after all, the only way into those issues, and reporters have overlooked them in other stories as well. In December, a report from the Woodrow Wilson International Center for Scholars described how the press has only slowly come around to mentioning bioethics and biosafety when writing about synthetic biology.

Thankfully, Skloot’s op-ed in the Times attracted a bit more attention to EMBL’s genome, with posts appearing at Forbes, Discover, and Smithsonian. Next time, others should take the initiative.

Curtis Brainard writes on science and environment reporting. Follow him on Twitter @cbrainard. Tags: , , , , ,