This newspaper article presents an overview of genetic testing for common diseases, an important development in clinical medicine and one likely to increase rapidly in importance. It does a good job of providing lists and bullet points that help people understand key considerations.
But the story falls short of best practices in several important ways.
Essentially the article provides a one-sided view of genetic testing, with the addition of some useful consumer information provided by the practitioners themselves. For such an important topic about critical health decisions, readers deserve a well-balanced story.
The article fails to state how much these tests cost, a serious shortcoming in a story like this.
It makes generalizations about testing being covered by private insurance and Medicare, but this creates a false impression. Testing is often covered only for certain conditions and under specified circumstances.
The story does not attempt to quantify the benefits of testing and treatment based on the tests. For instance, it would be very interesting to know whether research has established reduced mortality or morbidity in patients who have had the testing and treatment compared to a control group.
The article states that results need to be interpreted carefully and rationally.
But it fails to address two specific potential harms in a substantial way:
The article provides no evidence to verify the claims about the accuracy and benefit of the tests.
The article refrains from exaggerating the prevalence or severity of the diseases for which genetic testing is available.
Sourcing for this story is inadequate. It does not provide a range of views and proper context.
What’s clearly missing are the perspectives of dispassionate sources–clinicians and researchers who can talk about the value of these tests more generally. Information from sources who can describe poor outcomes (excessive anxiety, emotionally-driven decisions, false positives, inappropriate testing and serious treatment side effects) would have been particularly useful.
The story fails to mention the options facing those who choose not to be tested or who are tested but prefer to choose less invasive responses: lifestyle changes, medication (the birth control pill, for example, to reduce ovarian cancer risk) and close monitoring.
The choice is often testing vs. interventions to reduce risk, or testing plus treatment vs. testing with other interventions. This is not adequately explained.
This story is minimally satisfactory under this criterion. It provides a link to a source where to find a genetic counselor in your area.
But the article should have spelled out whether these services are widely available, only in large teaching hospitals, specialty clinics, etc.
The story correctly describes the testing as well-established but quickly developing as research into the links between specific genes and conditions continues.
There does not appear to be a press release that may have triggered the article.
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
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