The story outlines how new research about an existing family of consumer blood tests shows accuracy at seven weeks into pregnancy for determining the sex of a fetus. What the story also tells is the complicated weighing of risks and benefits that parents may need to use, since the consumer tests and their laboratories are not regulated by the FDA. We would have liked more information in here about which precise forms of testing among the 57 studies analyzed were most reliable and the quality of the evidence in the Journal of the American Medical Association survey.
Earlier sex-determination in pregnancy could lead to parents choosing (or trying to choose) the gender they prefer. Internationally, it is already clear that some parents in China and India are deliberately choosing male babies, and aborting female fetuses.
The research reported on, a survey in the Journal of the American Medical Association, does not directly address these larger ethical implications. But the study’s lead author, Diana Bianchi, does stress that she wants to examine “why people are buying these things” and the consequences of consumer access to over-the-counter testing for fetal gender. The New York Times story goes a bit further than the competing Reuters story in exploring how consumers may use the testing.
The story quotes one price estimate of about $250 for the testing. We would have liked more detail about whether new details on accuracy of the tests might change their status in the marketplace, or whether insurability status might change.
Parents who fear their child may inherit gender-linked disorders, such as hemophilia, could use this test earlier in pregnancy and possibly avoid more invasive procedures, such as amniocentesis. Amniocentesis carries a risk of miscarriage. We would have liked some numbers about how many women in the US are facing this dilemma; the situations that carry benefit are few. The average gestational “age” at enrollment in prenatal care in the US is after the window in which most of these tests are marketed. So that means if a couple did not know that they needed to think about X-linked mental retardation “fragile X” (which affect males) or hemophilia, the use of the test would not really be integrated into their care. Could have been more skeptical of why they are really being marketed – closer to entertainment ultrasounds than medical care.
Yes, the story lists potential harms. These range from inaccuracy, because the tests are unregulated and the laboratories don’t have to meet medical standards, to the potential for abortions based on fetal gender.
This story does not evaluate the quality of the evidence in the new study published in the Journal of the American Medical Association, which prompted the headlines. We applaud some of the details, giving consumers information about the lawsuit about one consumer product, but the discussion leaves readers confused about how to evaluate reliability.
We’re surprised that the story didn’t point out in absolute terms that 5 of every 100 tests of girls and 1 of every 100 boys will be wrong – 6 out of a hundred multiplied by millions of pregnancies a year! That’s a lot of errors even if uptake is minimal.
This story balances the potential for danger in giving parents early information about the sex of a fetus and the genuine benefit for some in avoiding more invasive testing when a condition is ruled out by knowing the gender information.
The story quoted four sources, in addition to the study’s lead author.
The story explains how parents who fear a sex-linked genetic problem for their fetus must balance risk against benefit in existing alternatives.It did not do a very detailed job of comparing how the new approach could compare, especially considering there is a risk of inaccurate results in the new approach. The hypothetical target group for these tests is much, much smaller than the broader use is and might become.
It did do a better job than the Reuters story in describing other tests (urine tests) that have been developed.
Yes, the story explains there are a variety of tests that have been widely available to consumers. But the story could have done a better job of connecting the dots for readers. Exactly how does one get a blood test done for a home test kit? Raises questions like: do I go to a lab? Finger stick? Are their costs other than the test? Shipping? Do I do this at home myself? Working with my medical care team? How soon do I get the results?, etc. Process of using several common kits could have been better described.
The new research was on testing that is not novel, but by surveying 57 other studies, they reached a new conclusion about overall accuracy and how early in pregnancy it could predict gender.
The story did not rely on a 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
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