Patient Engagement

Time, talk and tradeoffs: What a black woman’s genetic history says about patient engagement

The director of the National Institutes of Health met with the family of Henrietta Lacks three times. Two journals delayed plans to publish a map of the HeLa genome. And now family members now will have a say in how their relative’s genetic material will be used in future research projects. NIH director Francis Collins […]

The director of the National Institutes of Health met with the family of Henrietta Lacks three times.
Two journals delayed plans to publish a map of the HeLa genome.
And now family members now will have a say in how their relative’s genetic material will be used in future research projects.

NIH director Francis Collins and others have said that this is not precedent setting and won’t change how other unconsented cell lines and data are used. Maybe not much has changed for researchers, but this sets a whole new example for patients.

Now non-scientists — people whose genetic information is being used by corporations to make money — have a specific example of how to deal with this kind of situation. They can learn from the lessons of an average family who won recognition, a semblance of fair treatment, and information from the often intimidating world of scientists and bureaucrats.

An important guy met with the family three times to work this out. Publishers changed their plans and finally the rules changed after decades of waiting. And this was after scientists and researchers took tissue samples and published research three separate times without explaining this work to the Lacks family:

  • When Henrietta’s cells were taken initially in 1951
  • When family members’ blood samples were taken in the 1970s for additional research
  • When Henrietta’s genetic information was posted in March 2013

Even after Rebecca Skloot’s fantastic and bestselling book about the Lacks family, no one thought to tell the family earlier this year that the genetic information about the HeLa cell line was going to be published:

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.

At this point, Skloot decided it was time for an update from the family’s perspective and a reality check on the researchers’ privacy claims?

One uploaded HeLa’s genome to a public Web site called SNPedia, a Wikipedia-like site for translating genetic information. Minutes later, it produced a report full of personal information about Henrietta Lacks, and her family. (The scientist kept that report confidential, sharing it only with me.) Until recently, few people had the ability to process raw genome data like this. Now anyone who can send an e-mail can do it.

The Lacks family is proud of HeLa’s contributions to society, and they don’t want to stop HeLa research. But they do want to learn about the HeLa genome — how it can be used for the good of science while still protecting the family’s privacy — so they can decide whether to consent to its publication. And they want researchers to acknowledge that HeLa cells are not anonymous and should be treated accordingly.

In her book, Skloot explained that some family members wanted a share of all the money that has been made from the HeLa cell line. Collins said that money came up in his discussion as well, but that neither he nor his staff could think of a way to make this happen. Even if there is no financial compensation for the family, they will have helped other patients avoid this kind of exploitation and misinformation.

I see this issue just as Jaron Lanier sees digital data: it’s worth something and people should get paid for it.

Three people recommended “The Immortal Life of Henrietta Lacks” for our late summer reading list – and now the story of the . This latest news makes the book even more relevant for anyone working in research and patient advocacy.