“cure…stop the greatest killer on earth” |
Step out of the pandemic news coverage for a moment and rediscover the incredible hype of non-pandemic news.
MIT Technology Review Released this title :
In the article, the CEO of the biotech company conducting the study reportedly said:
“If it works and is safe, it’s the answer to the heart attack – it’s the cure,”
These are very big vaunted IFs in the first 150 words of the story. Powerful big IFs in one breath to speak in the next breath of healing and stopping the greatest killer on earth. Why should there be more caution at the top of the story – and throughout the story? Because this is the very beginning of a human trial. There are no results yet – on safety or effectiveness.
Jennifer Doudna, a University of California, Berkeley scientist who co-invented CRISPR in 2012, said that while base editing “works very well in research settings” and might be suitable for disrupting genes, it don’t think it currently has the accuracy to fix mutations. Core editors often edit other DNA letters around the single letter you want to edit, she said. “So that means you usually end up getting more edits than you’d like.”
But the hype didn’t just start the first day the first experimental subject was injected Two months ago – before the trial even started – Bloomberg Businessweek headlined an article about this research: “Ending heart attacks by modifying human DNA. With its business focus, the article included this economic projection:
So far, analysts predict that Verve’s therapy will cost between $50,000 and $200,000 per patient. Companies rarely reveal much about pricing before their products hit the market, but (the company’s CEO) says the estimated range is “a reasonable starting point”.
And two years ago, the New York Times, which often seems to have a love affair with the word cure, headlined an article about this early research, “A ‘cure for heart disease’? Only one shot succeeds in monkeys.
Certain journalists are certainly stoking the flames of potential markets for such a therapy – if, indeed, it is ever proven to be a therapy – if it is ever shown to have a human therapeutic effect.
Just think of how many people with heart disease in their family have called their doctors about that hype or that hope barely on the horizon. I hope for good things for them, but I feel for them if they are led down the boulevard of broken dreams. It doesn’t have to be that way. Patients should seek journalism that, among other things:
- emphasizes the extremely preliminary stage of this research (eg that there is currently no evidence of benefit or safety for humans);
- Reminds readers of the jump often occurs between laboratory research and animal research and human research;
- Places as much or more emphasis on what is not known – and where the uncertainties lie – than on projections of cures;
- Reflects an understanding and sensitivity to the impact of such reporting on people with serious illness.
This is a vitally important area of research. Solid and reproducible findings do not require sensational descriptions; their data tells the story. Such data does not yet exist on this story.