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
A week like this should teach you how/what to ignore: #COVID19 news & PR about studies in monkeys & mice...about studies of dishonesty & BMI…and about rating attractiveness of women with endometriosis!!! https://www.healthnewsreview.org/2020/08/crazy-week-of-pr-news-on-studies-should-teach-us-how-what-to-ignore/
“to project certainty where it simply does not exist is communication malpractice at a time like this and with a public health issue like this.” @garyschwitzer on @ContentScience https://review.content-science.com/covering-covid-19-vaccine-news-part-two-from-the-publisher-of-health-news-review/
In case you weren't aware: Prestigious journalism organizations and outlets take money from pharma, @garyschwitzer https://www.healthnewsreview.org/2020/08/drug-company-influence-on-journalism/#.XyrYGZeNvXA.twitter @HealthNewsRevu
Comments (1)
Please note, comments are no longer published through this website. All previously made comments are still archived and available for viewing through select posts.
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/
Our Comments Policy
But before leaving a comment, please review these notes about our policy.
You are responsible for any comments you leave on this site.
This site is primarily a forum for discussion about the quality (or lack thereof) in journalism or other media messages (advertising, marketing, public relations, medical journals, etc.) It is not intended to be a forum for definitive discussions about medicine or science.
We will delete comments that include personal attacks, unfounded allegations, unverified claims, product pitches, profanity or any from anyone who does not list a full name and a functioning email address. We will also end any thread of repetitive comments. We don”t give medical advice so we won”t respond to questions asking for it.
We don”t have sufficient staffing to contact each commenter who left such a message. If you have a question about why your comment was edited or removed, you can email us at feedback@healthnewsreview.org.
There has been a recent burst of attention to troubles with many comments left on science and science news/communication websites. Read “Online science comments: trolls, trash and treasure.”
The authors of the Retraction Watch comments policy urge commenters:
We”re also concerned about anonymous comments. We ask that all commenters leave their full name and provide an actual email address in case we feel we need to contact them. We may delete any comment left by someone who does not leave their name and a legitimate email address.
And, as noted, product pitches of any sort – pushing treatments, tests, products, procedures, physicians, medical centers, books, websites – are likely to be deleted. We don”t accept advertising on this site and are not going to give it away free.
The ability to leave comments expires after a certain period of time. So you may find that you’re unable to leave a comment on an article that is more than a few months old.
You might also like