Posted on behalf of Ewen Callaway
The idea that people should have a say over how their cells are used in research isn’t revolutionary, but it flies in the face of research practices over the past century. That it nearly became law is due in no small part to Rebecca Skloot’s 2010 bestseller The Immortal Life of Henrietta Lacks, the story of the African-American woman living in Baltimore, Maryland, whose fatal tumour – taken by scientists at Johns Hopkins Hospital in 1951 without the knowledge or permission of Lacks or her family — gave rise to the first immortal human cell line, HeLa.
The book fuelled a much-needed conversation about scientists’ moral obligations to research participants and their families. Now a powerful film adaptation of the same name, starring Oprah Winfrey as Lacks’ youngest daughter Deborah, looks set to amplify that.
Skloot’s book covered a lot of ground, and the film’s director George C. Wolfe (best known for directing and producing Broadway hits such as Tony Kushner’s Angels in America) does an admirable job cramming in details about how HeLa cells were established and their ongoing impact on research. But the movie, broadcast on 22 April on premium US television network HBO, largely covers the decade it took for Skloot to report and publish her book. It focuses in particular on her efforts to gain the trust of Lacks’ family and build an emotional bond with Deborah Lacks.
Their relationship can feel overly dramatized, although Wolfe should not be faulted for taking some dramatic licence with Skloot’s book in what is, after all, a dramatisation (she also served as an executive producer). But much of the film rings true. A scene in which Deborah Lacks questions Skloot’s financial motives and grabs her arm is exactly as described in the book.
By omitting some key aspects of the book — the science and history of cell culture and large swathes of Lacks’ biography — the film can feel meta. It is, after all, a film based on a book about a journalist trying to write a book. But it should encourage more people to read the story and absorb its powerful message of social injustice institutionalized by science.
US National Institutes of Health (NIH) director Francis Collins and then-deputy Kathy Hudson have noted that Lacks’ story inspired policy changes in the rules that govern research on human subjects (officially known as the Federal Policy for the Protection of Human Subjects, but widely known as the Common Rule). “The people who are participating in research and providing pieces of themselves should be providing permission as well,” Hudson told Nature in 2015, when the government floated a proposal that would have required them to get approval to reuse discarded samples of blood, urine and other specimens for studies beyond those the subject initially agreed to. But the proposal caused consternation among many scientists. They breathed a sigh of relief this year, when the final version. of the Common Rule largely maintained the status quo. As long as a participant’s name is removed from the sample, scientists needn’t obtain new consent.
That may seem like a setback in a quest for justice the Lacks family is all too familiar with. But other developments suggest that the Lacks’ story has changed how research participants are treated by scientists.
Currently, a movement for “dynamic consent” — focused on the establishment of a lasting relationship between researchers and study participants — is growing. It was pioneered by professor of health, law and policy Jane Kaye, while elements of it are being used in Australia. Participants or their relatives (in cases where they are no longer alive) are kept up to date on how their samples are used in research, and they can opt out of particular studies or remove their sample entirely.
The Lacks are finally gaining some control over HeLa cells, if not the remuneration many members have in the past and some still seek. In 2013, after researchers funded by the NIH sequenced the HeLa cell genome without the knowledge or consent of the Lacks family, Collins helped broker a deal with the family to limit access to the data. Now, all NIH-funded scientists and others who want the best quality HeLa genome must explain their research to a committee that includes a Lacks family member. It’s enough for a sequel.
Ewen Callaway is a senior reporter for Nature based in London. He tweets at @ewencallaway.
For Nature’s full coverage of science in culture, visit www.nature.com/news/booksandarts.