Professor Stephen Zubrick, Chief Investigator of FASD Research Australia:
Hello, I'm Professor Steve Zubrick and I'm the Head of the Brain and Behaviour Research Focus Area at the Telethon Kids Institute here in Perth. Where, for the past 25, years it's been my privilege to work with Professor Carol Bower.
Professor Bower is a gifted medical researcher and epidemiologist. Now, an epidemiologist specialises in the study of patterns and distributions of illnesses and health in populations, and one of the fascinating areas that Carol has been concentrating in the past several years has been the study of alcohol use in pregnancy, and one of the outcomes called fetal alcohol spectrum disorders that can arise from that.
Carol is with me today and it's my special privilege to be able to ask her some questions about the science of FASD, and the process of understanding what to do about it.
So welcome, Carol.
Professor Carol Bower, Co-director of FASD Research Australia:
Thank you, Steve.
Professor Stephen Zubrick:
Carol, why is alcohol use in pregnancy an issue worthy of research?
Professor Carol Bower:
Alcohol is a known teratogen, a substance that causes damage to the developing fetus, and hence if you're not drinking alcohol in pregnancy then your fetus is not exposed to that alcohol, and so you don't see the consequences that would flow otherwise, if you were drinking alcohol.
So I think it's really an important thing because there are very few birth defects - and that's what FASD is - that can be prevented. So that makes it worthy in my book.
Professor Stephen Zubrick:
I'm sure this research can't be done siting alone at your own desk and I'd be curious to know how you came to actually collaborate on researching FASD in the first place?
Professor Carol Bower:
There were two sort of serendipitous things that happened. I was contacted by Sue Miers, who is the mother of a young woman with fetal alcohol spectrum disorder, and Sue wrote to and phoned a lot of people, one of whom was me. And we had just done, as it happened, sort of as an aside, looking at how common fetal alcohol spectrum disorder was amongst notifications to the WA Register of Developmental Anomalies, which I was working on then.
And then just some weeks after that I was talking with Professor Liz Elliot in Sydney. We were working on the Australian Paediatric Surveillance Unit and Liz said, "what do we know about FASD in this country?" Well, fetal alcohol syndrome, it was just called then. And so we hatched a plan to add fetal alcohol syndrome to the notification card for the Australian Paediatrics Surveillance Unit which goes out to all paediatricians in the country, every month to see how many newly diagnosed cases of a whole range of conditions but including in this instance fetal alcohol syndrome. And then we did a whole lot of other research that sort of grew out of that interest.
Professor Stephen Zubrick:
What were some of the important findings that you've actually turned up in the work that you've been doing?
Professor Carol Bower:
Well, the original work really showed that there was not a lot of knowledge amongst health professionals about how you made the diagnosis; how you asked about alcohol use in pregnancy; or even asking about alcohol use in pregnancy. So we did a number of studies early to find out what health professionals knew. And then what they'd like to know, and how they'd like to know it. And then based on that we developed some educational resources that we then delivered to health professionals and then we evaluated how effective they'd been. Some people were saying we should just be telling women about the risk and to not drink in pregnancy, which of course we need to do and we are doing now, but at that time we felt that we had to have a health profession that was upskilled and knowledgeable because women would turn to their health professional and if the health professional is saying, it's ok to have a few drinks, don't worry love, then that wouldn't be a good thing.
Professor Stephen Zubrick:
Carol, if you look back and you think about where we've come, from where you started, what do we know now that we didn't know before?
Professor Carol Bower:
Of course, to talk about fetal alcohol spectrum disorder, in order to make the diagnosis even, you need to know whether alcohol has been consumed in pregnancy, which sounds simple, but it isn't that simple.
When we did the first surveys of health professionals back in the early 2000's, very few - something like 10-15% of health professionals - routinely asked women about alcohol use in pregnancy for example, and only 12% of paediatricians and other health professionals knew the diagnostic criteria for fetal alcohol syndrome at that time.
We've worked hard to get questions being asked in pregnancy and recorded on the perinatal data system in this country, so that the information is recorded right, close at least, close to source, and can then be gone back to later if a child presents with some neurodevelopmental problems. But one of the bits of work that we've done here in Australia, is to put together a diagnostic criteria and a diagnostic guide for fetal alcohol spectrum disorder for Australia so that the diagnosis across the country should be being made using the same criteria. And that's now being revised and we're contributing to that revision of the Guide.
Professor Stephen Zubrick:
Who actually needs to know about these findings?
Professor Carol Bower:
Steve, everyone needs to know. It's not just a matter for women who are planning pregnancy or in pregnancy, the general public needs to know, health professionals need to know, governments need to know, service providers need to know so that they can support not drinking alcohol in pregnancy.
Professor Stephen Zubrick:
And how are women finding out about this?
Professor Carol Bower:
In lots of ways, I mean health professionals now are much better at informing women about this, there's a lot more material out there and available. There's a whole lot of social media, there've been a number of health promotion programs.
Australians have a love affair with alcohol and it's really important that, I think, that everyone understands that this is a risk if consumed in pregnancy and women need support to not drink.
Professor Stephen Zubrick:
Have we gotten better, as it were, giving women permission not to drink during pregnancy?
Professor Carol Bower:
I think so, I think so.
And there's one caveat here, because of course there are people who drink because they have an addiction to alcohol. The supports that they need are quite different, so that's a really important thing when, you know, there are people who are working on that aspect in relation to pregnancy too.
Professor Stephen Zubrick:
Carol, you've been fortunate to have significant funding through the National Health and Medical Research Council to create a Centre of Excellence for Alcohol, Pregnancy and FASD. What are some of the examples of the advocacy work this has allowed you and your teams to do?
Professor Carol Bower:
Well a very current one is our advocacy for pregnancy warning labels on alcohol products. Previously they were voluntary, so they didn't have to be on there and they were in the remit of the industry. Whereas now, these labels are mandatory and this was worked through with the Food Standards Australia and New Zealand and then that went to the Ministerial Forum and that was approved just earlier this year.
Professor Stephen Zubrick:
Brilliant, brilliant.
Carol, what would you say are the changes or impacts of this work so far? Can you give us some examples?
Professor Carol Bower:
Well, I think a really important example is our work in youth detention. We did a study in the youth detention centre in Western Australia and identified a really high rate of fetal alcohol spectrum disorder and an even higher rate of neurodevelopmental impairments - severe neurodevelopmental impairment - 90% of young people in detention, and one of our PhD Students has worked with the staff at the detention centre to find out ways of providing training for them, and so she's developed the training, she's delivered the training and she's evaluated the training about how these kids can be managed differently, playing to their strengths and supporting their difficulties. And there are calls from across the country and indeed from other parts of the world to be able to use Hayley's work in that field.
Professor Stephen Zubrick:
Carol, for a career that has had great generosity and humility and great scientific results, thank you very much.
Professor Carol Bower:
Thank you, Steve.