herenciageneticayenfermedad: BioEdge: Why the media need to tread carefully when reporting research findings

sábado, 11 de febrero de 2017

BioEdge: Why the media need to tread carefully when reporting research findings

Why the media need to tread carefully when reporting research findings

by Hannah Brown | 7 Feb 2017 |

The Australian of the Year was awarded recently to biomedical scientist and stem cell researcher, Professor Alan Mackay-Sim. To have a scientist recognised for such a prestigious award was extraordinary, especially during such a challenging time for research in Australia and globally.

But alas, there was barely time for the firework-smoke-haze to clear and Australia Day hangovers to subside before criticisms emerged and accusations were made that Professor Mackay-Sim had played no role in the scientific miracle that saw a paralysed man walk again.

While the types of cells used were similar (stem cells taken from the nose), the team responsible for the “miracle” say Mackay-Sim’s work did not inform their own. Mackay-Sim has reportedly vowed to make this clear over the course of his duties as Australian of the Year.

Is basic research front page news?

While it’s unlikely we will ever know how his role was so misconstrued, the over-exaggeration and inflation of fundamental results is a common story. Any scientist with media experience is likely to have a horror story to share, of mistruths and misconceptions of the impact of their research being aired publicly as breaking news.

Almost weekly we hear of another “ground breaking cancer treatment breakthrough,” but how many make it to the clinic, and how many will actually help patients? The honest answer is: very few. Even if they survive the scientific rigour of laboratory trials, the path to clinical trials is long and expensive, with most lost along the way.

How often do scientists get to speak freely about their (often life-long) contribution, without expectation of an outcome, without making a pill or device? How often do they get to say: “I contributed knowledge to a pathway that may help us to treat a wide range of diseases, but it’s still many years away”. Rarely, if ever.

After all, finding the cause is the first step towards finding the cure, but unfortunately, describing how something happens or works is far less sexy, and attracts far less attention than “curing cancer”, “reversing infertility” or “helping a paralysed man walk again”.

As scientists, we can most often predict the pressing questions from the media: “when will we see the first trials” or “how soon do you think this will be helping patients”, but the answers aren’t simple, or front page news worthy. It’s a long road, perhaps 20 years from many laboratory discoveries to a product.

Over-inflation of the facts helps no one

As I heard the story, I had immediate empathy and compassion for Mackay-Sim. After all, the Australian of the Year isn’t a science award, it’s an award that recognises contribution. And I’m certain there’s absolutely no question among scientists that Professor Mackay-Sim is worthy of a contribution award.

But the empathy was more personal. I, too, know the experience of a media frenzy following a “breakthrough” discovery, which left patients (perhaps) more hopeful than they should be, and me scrambling for answers. We had made a great discovery, but one that required far more research before it would ever be ready for patients.

To the media, we had cured infertility, reversed ageing and were changing the face of fertility treatment in Australia. I received thousands of emails from desperate couples hoping to benefit from my research findings: from women who had received radiation as teenagers, saving them from cancer, but rendering them infertile as adults; from parents, whose children were unable to conceive; from business execs who had “waited too long”.

I was temporarily traumatised, but realised my role as a scientist meant working hard both towards fundamental discovery, translation and to communicate those discoveries with the media and the public.

What causes this over-inflation?

The pressure to perform as an Australian scientist is greater than ever, with research funds scarce, and jobs on the line. The National Health and Medical Research Council (NHMRC) funds scientists for three to five years at a time, which is considerably shorter than the time taken to turn a fundamental discovery into a treatment or cure.

As scientists, we are encouraged to think big, to elaborate on the “clinical relevance” and “translation capacity” of our research in every application, even though this may be many years away.

When combined with a front page story, research that “looks promising in animal models” can easily become “is ready for clinical trial”, and while to the average person that may seem like a small jump, it may be a decade in reality. Add an emotive interview or photo, a sick child or young couple plagued by infertility who are “hopeful this breakthrough will help” them, and you have a recipe for over-inflation.

Some important lessons

The most important lesson here for scientists is learning how to effectively engage with the media. Now, more than ever, in a world filled with “fake news”, it’s up to researchers to work hard to have accurate messages publicised. Be positive about the future, but also honest about what this discovery means and how likely it is the research will translate into outcomes.

And the media need to provide a place for open and honest dialogue, for conversation and exchange. Ask about the next steps. Is more laboratory testing required? How long has it taken to get to this point? Do we know if it’s safe? What would it take to make this a treatment or cure? And if the research was performed in animals, then say so. And remember, “world first” is exactly that, the first time it has occurred, meaning the end goal may be out of reach, for now.

And readers need to ask questions, be sceptical and engage. Be involved, check out citizen science, and contribute to Australia’s vibrant science community.

Hannah Brown, Post-doctoral Fellow; Reproductive Epigenetics, University of Adelaide. This article was originally published on The Conversation. Read the original article.

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