The latest update from Media Doctor Australia examines media coverage of new technologies for diagnosis and treatment of genetic disorders, and makes some recommendations to help journalists.

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Some tips for covering genetic testing and treatment technologies

Adam Carroll writes:

BREAKTHROUGH DIAGNOSIS; GENETIC SCREEN; RARE DISORDER; NEW HOPE: great words to capture attention and entice audiences into reading stories on new technologies for diagnosis and treatment of genetic disorders.

However, Media Doctor Australia has seen vast differences in the quality and potential impact of these stories, reflecting the varying strategies employed to sustain a reader’s interest.

Some stories work elegantly to educate and entertain readers, as in The Australian’s ‘Tiny vectors carry hopes of a cure’, (subscription only). This story used an informative and balanced approach to discussing progress and future directions for the use of viral vectors in the treatment of genetic diseases. While the emotive strategy of an affected family was used to add human interest, this did not come at the cost of accuracy.

Other stories, like the Sunday Telegraph’s ‘Scientists want kids with three parents to help eradicate genetic disease’, appear to be written for the sole purpose of polarising their audience and creating controversy.

This story opened with the line “SYDNEY scientists want to create designer babies with the DNA of three parents to prevent children inheriting life-threatening diseases” hitting the strobe light straight on the ethical arguments surrounding this type of technology. This science functions like an “organelle transplant” so that defective mitochondria are not passed from mother to child.

While the technology is still very much in its infancy, the story gave the impression that IVF clinics wanted it implemented right now, in Sydney. It’s hard to believe this type of story isn’t deliberately stirring up dissent especially when you read the emotional feedback in the online comments section.

Then there are the stories that border on promotion of new diagnostic procedures. An example of this can be seen in the Sydney Morning Herald’s “Hair test for breast cancer on the horizon”.

What wasn’t made clear in this story is that it’s very early work and much more research is needed to validate this diagnostic procedure to see how accurate it is. False diagnosis of something like breast cancer can lead to unnecessary, invasive and potentially harmful testing and the fear and anxiety that go along with that.

To improve this type of story, journalists should consider key points such as:

• false negative rates (eg, a cancer test comes back negative, even though the person has cancer)
• false positive rates (eg, a cancer test comes back positive, even though the person does not have cancer)
• the evidence behind company’s claims
• how the test performs compared to existing tests
• when and where will it be available
• how much it will cost
• who will pay for it, and
• get a second opinion – an expert who doesn’t have a conflict of interest.

Tests, and especially genetic tests and therapies can be challenging to report on.

Most medical professionals have difficulty understanding the science and statistics in this area. The increase in stories discussing diagnostic advances and new treatments of genetic disorders is a positive sign for the health of our society.

But there is also pressure for companies to sell their products and researchers to publish their research, and journalists should remain sceptical and consider ways to make stories interesting without sacrificing quality of content.

• Adam Carroll is a PhD scholar in Molecular Neurobiology at the University of Newcastle and a reviewer for Media Doctor Australia.

• See previous posts from Media Doctor Australia