This story is the best of four we reviewed on a study of women with an elevated risk of cancer connected to mutations in their BRCA1 and BRCA2 genes and the effects of preventive surgery. (See reviews of the Reuters, NPR and HealthDay stories.) In contrast to the other stories, this one doesn’t portray surgery as the only reasonable option. It is the only one to clearly point out that the findings are based on observations of women, some of whom chose to have preventive surgery, and not a randomized, controlled trial of treatment options. It is the only one that included the costs of testing and treatment. And it did the best job of presenting the choice of options available to women as just that: a choice. The only criterion where this story fell short was that it failed to make clear that the testing, counseling, surveillance and treatment available to the women in this study is generally more comprehensive and probably higher quality than what is available to most women seen in typical clinical settings.
The findings of this study are likely to have a strong influence on the advice given to women who have a high risk of breast and ovarian cancer due to BRCA1 and BRCA2 gene mutations. Nevertheless, news reports should try to do what this story did: present the complexities of testing and treatment decisions and avoid characterizing one course as superior for all women in all cases.
The story refers to the costs of both testing and treatments.
The story provides a bullet point list detailing key study findings. This list points out the percentages of women who developed cancer or died, directly comparing the results for women who had preventive surgery to those for women who did not.
The story lists some harms of ovary removal, including infertility, early menopause and possible increases in osteoporosis or heart disease. The story does not mention the harms of mastectomy, but this is largely because the report focused almost entirely on the findings related to ovary removal and only briefly mentioned mastectomy.
The story accurately describes the study. It specifically mentions that it was an observational study, not a trial in which women were randomized to different treatments. It even adds that this sort of observational study can’t prove that one option is better than another and that other factors may have caused differences in cancer rates.
The story makes clear that the study findings are relevant specifically to women who have been told they have genetic mutations that indicate they have a very high risk of developing breast or ovarian cancer. It also spells out the differences in cancer risk between women in the general population and those who have BRCA1/2 mutations, thus underscoring that this study is relevant only to that subset of women.
The story includes comments from an author of an editorial in the journal who was not involved in this study. Although the story does not report financial or other information about the sources, the study was funded by a variety of grants from public agencies and foundations and neither the researchers nor the editorial writers reported any relevant financial disclosures.
The story notes that women may choose to have increased screening to watch for cancers. It highlights the seriousness of the choice by including a quote from a researcher calling it a profound decision and also noting that the women received counseling to help them weigh the choice.
The story does not mention that the type and quality of genetic testing, genetic counseling, surgery and surveillance offered to women in this study may not be available to women in other settings.
The story refers to earlier studies of preventive surgery for these women. It also specifically notes that genetic testing for BRCA1/2 has been available for more than a decade.
The story includes comments that appear to come from interviews.
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 (2)
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Shari
May 16, 2012 at 3:59 pmI would like to read this story, but the link appears to be broken. Can you please update it?
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