This moving story about one son’s quest to cure his mother’s cancer manages to explain to readers quite a lot about the broader issue of the limitations of genome sequencing, the difficulty in pinpointing the cause for certain cancers, and, perhaps most importantly, the difficult emotional terrain traversed by patients and clinicians out on the frontiers of medical research.
Genome sequencing and cancer research are two areas that often cause journalists to lose their critical faculties. This story provides a great model for how to write about interesting new research while not creating too much hype – or hope – about the findings.
Even while writing about an experimental treatment being tried in just one patient, this story weaves a discussion of costs throughout. And it makes it clear that this treatment would be out of reach for most people. It also hints at the costs of the research itself, explaining, for example, that “there are unavoidable errors in sequencing, so to be sure the data is correct, researchers repeat the sequencing 30 times — 30 libraries’ worth. They do this for the normal cells, too — another 30 libraries’ worth. This kind of data, though, does not come in neat genetic words and sentences.”
The story does not quantify the benefits, and we realize that this would be difficult for a case like this. In the context of the compelling narrative, the amount of information about the benefit of the treatment was adequate.
The story starts out with the premise that this treatment was as likely to kill the patient as cure her. She did not end up cured, and she did end up dying. She was expected to die anyway, and the story ends on a proper note of uncertainty: “Yet would she have survived as long even without the sequencing or the drugs? Did the team make a difference?” More powerfully, the story explains the harms in raising hopes to this level. Here was a woman who had resigned herself to dying, only to have the promise of a cure raised by none other than her son. The story doesn’t say that the fight to save her wasn’t worth it, but it makes it clear that the fight had its own emotional toll.
It was appropriate that this single case narrative was reported as just that, a single case. It would have been easy to generalize some of the aspects and make comments about the future of personalized treatments.The story explains at nearly every turn where the researchers were finding their evidence, how difficult the search was and, in some cases, how little they had to go on. For example, it quotes the patient’s son, the lead researcher in the effort to save her, saying, “We had this shaky evidence, based on the genome and on unpublished data.”
There was no disease mongering in the story. Instead, the story was presented in vivid but never overly dramatic terms.
The story is focused mostly on the personal journey, and most of the quotes come from the patient, her son, or doctors directly involved in her care. Independent perspectives – with some emotional remove – would have been appreciated.
There do not appear to be any alternative treatments in this case.
The story makes it clear that this treatment is not available and is entirely experimental. It also, however, shows how difficult finding a treatment based on individualized genome sequencing would be.
The story definitely shows how novel this approach was and how hard it would be to replicate it for a wider group of patients.
It’s clear that the story did not rely on a news release.
Systematic, Criteria-Driven
Monday at #ADA2021, an infectious disease epidemiologist, a journalist, and a researcher shared perspectives on communication of risk in the era of COVID-19: http://ow.ly/ROfR30rMeE7 @AstleyCM @garyschwitzer @berthahidalgo @ADA_DiabetesPro
Shoutouts to @susan_bewley @drkevinknopf @MichaelBaum11 in this call for more than fawning coverage from press releases for these kinds of stories.
Also, linked history inside goes back 5 years just on Grail apparently trying to become Holy Grail. https://twitter.com/garyschwitzer/status/1408849696416841731
Comments (1)
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Greg Pawelski
July 11, 2012 at 12:07 pmDr. Robert Nagourney, of Rational Therapeutics, blogged about another segment in Gina Kolata’s series of articles, “In Leukemia Treatment, Glimpses of the Future.” It was in stark contrast to the information supplied by her expose. How many patients have access to 26 gene-sequencing machines capable of identifying genomic targets? The most connected and wealthiest of individuals. Dr. Nagourney reminds us that once again we find that expensive, difficult tests seem preferable to inexpensive, simple ones. While technocrats at the helm of oncology research promise to drive the price of these tests down to a level of affordability, everyday, 1,581 Americans die of cancer. Why do we have to wait for those tests that might work tomorrow when we have good tests that work today?
http://robertanagourney.wordpress.com/2012/07/10/stalking-leukemia-genes-one-whole-genome-at-a-time/
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