JABBED: the reaction; and do you want to see my genome?

Bulletins, Media bulletins

In this bulletin:

American researcher Howard Jacob is leading the world in ‘personalised medicine’: sequencing your whole genome to identify rare mutations that cause disease.

In 2010, he saved the life of a little boy with a rare genetic digestive condition who was literally wasting away.

He’s working in the States to persuade insurers, hospital boards and the parent of the sick children he treats to trust that the cost of this new technology is worth it, even if we don’t always have cures at the ready, and he told doctors and researchers at the Royal Children’s Hospital this week that there’s no reason that we couldn’t do the same in Australia.

Howard is available for interviews in Melbourne this week: call me on 9398 1416 if you’re keen to chat with him.

Tonight in Melbourne, meet the filmmaker behind JABBED: a TV doco on the choices parents make on vaccination.

More than 350,000 people watched the documentary live on SBS last weekend, and many more have watch online. On Twitter, #JabbedSBS has been trending across Australia.

At tonight’s forum, immunologist Sir Gus Nossal and paediatrician Prof Ingrid Scheffer will join Emmy Award-winning producer Sonya Pemberton for a panel chat about the messages in the film and consider what’s going wrong in our national debate on vaccination.

I’ll be in Sydney tomorrow for a summit about science communication in Australia. I think they’re a bit too focussed on new technologies and not enough on narrative and old school communication. But I’ll try and nudge them in the right direction.

More at http://sciencerewired.org/summit

Finally, if you’ve met any brilliant medical researchers recently, consider encouraging them to nominate for the CSL Florey Medal, which recognises our top biomedical researchers. Past winners include Ian Frazer, Graeme Clark, and Nobel laureates Barry Marshall and Robin Warren.

More details on that at: http://www.aips.net.au/news-events/the-florey-medal/

Personalized medicine: saving kids’ lives by sequencing their genome

Howard Jacob is a pioneer of ‘personalized medicine’: a couple of years ago, he and his colleagues successfully treated a five year old with a life threatening digestive condition by sequencing the boy’s genome to find a rare mutation.

But he’s also all too aware that not all his cases turn out that way, and he’s wary of promising too much to the parents of sick children.

Howard is available for interviews in Melbourne this week.

He told doctors and researchers at the Royal Children’s Hospital this week that there’s no reason we shouldn’t be using genome sequencing in Australia, provided we’re willing to communicate honestly with patients.

Prof Kathy North, director of the Murdoch Childrens Research Institute said even in cases where a cure isn’t available, genome sequencing can give parents the peace of mind of a firm diagnosis.

“Genome sequencing is the first step towards developing therapies for rare genetic diseases. We don’t yet have all the answers, but that shouldn’t hold us back,” says Kathy. For the parents of the very sick children we see at the Royal Children’s Hospital and the Murdoch, a diagnosis can be life-changing.”

Personalised medicine is a controversial idea, especially in the US, but with the cost of sequencing now down from billions to thousands of dollars, it’s feasible to add it to our arsenal of treatments for rare diseases.

Howard reckons we need to not just talk about how personal genomes will change medicine. It’s time to use it now, especially for undiagnosed conditions:

“Today we go to see our physicians or healthcare providers when we are sick, which is truly more disease care than health care. The ability to ready the entire genetic code of people at birth will allow us to start moving medicine from being reactive to prospective.

“While we have the technology today to start the process, there is a critical need to develop many new technologies from data generation, and data analysis to data knowledge and clinical implementation.

“The solutions will come from people with strong backgrounds in science, mathematics, computer science and engineering, as well as health care teams.”

Howard is planning a $60 million genomics centre at the Medical College of Wisconsin, which recently became the first in the world to offer complete whole genome sequencing (WGS), from patient consent through the return of clinical results, to patients worldwide.

Watch a video of Howard explaining his work: http://www.youtube.com/watch?v=xxJ7Vvw3A_s

And here’s a segment of a doco about one of the children he’s treated: http://www.youtube.com/watch?v=4gUZiwgWpW8

How do you decide whether to vaccinate your kids or not?

The real stories behind the SBS documentary JABBED: fear, love and vaccines.

Why are Melbourne babies getting whooping cough?
Why are measles epidemics appearing in Europe?
Why does vaccination remain so controversial?
What’s going wrong with the community conversation about vaccination?

Last Sunday SBS broadcast JABBED, a powerful documentary on why we immunise our kids, and why it can be a difficult decision for parents.

Today in Melbourne, meet the film’s maker, Sonya Pemberton, who will discuss its messages with three leading scientists.

At the forum Sonya will discuss why she made JABBED and how it has changed her view of vaccination and the conversations we need to have.

The film reveals how vaccination is a key part of public health, yet also acknowledges that there are real and rare risks. Many people, understandably, have questions and concerns. In a world of information overload and conflicting stories, JABBED asks how do you reach a thoughtful, informed decision?

The response has been extraordinary. Over 350,000 Australians watched JABBED on Sunday night. Over 20,000 people have watched the film online at www.sbs.com.au/shows/jabbed.

JABBED trended number one nationally on Twitter during the broadcast, and people are still sharing their stories at #JabbedSBS. It also reached more than 600,000 people via Facebook in just a few days.

Today in Melbourne, meet the film’s maker, Sonya Pemberton, who will discuss its messages with three leading scientists.

At the forum Sonya will discuss why she made JABBED and how it has changed her view of vaccination and the conversations we need to have.

Then she’ll join a conversation with:

  • Melbourne paediatric neuroscientist Ingrid Scheffer who discovered why a form of epilepsy (Dravet syndrome) is sometimes associated with vaccination, and
  • Immunologist Sir Gustav Nossal

And if you’d like more background on any of the cases covered in the film, we’ve prepared some briefing notes for doctors. You can read them at www.scienceinpublic.com.au/jabbed.