Mental health, biobanks and encouraging women's birthing choices

Ellen Leabeater:

Hello. Welcome to Think:Health. Ellen Leabeater with you. Today we explore the ethics of biobanks.

Dr Paul Mason:

What happens when a sample is collected in one country and stored in another country? What is the right of the donor in that instance to withdraw their tissue or to have access to their tissue? Or to benefit from the findings done on their tissue?

Ellen Leabeater:

And encouraging women to have a vaginal birth after a caesarean section.

First up, according to the World Health Organisation between 10 and 20% of adolescents worldwide experience mental health disorders. In China, that number is around 15% for depression, and 25% for anxiety. If mental health disorders are untreated they can affect an adolescent’s education and wellbeing. Lawrence Lam is a professor of Public Health at the University of Technology Sydney. He's about to roll out a mental health education programme in Guangxi, in southern China. The programme will be developed from the Mental Health First Aid framework which teaches skills like how to recognise the signs and symptoms of mental health problems and where to refer people for help.

Lawrence Lam:

The problem for mental health issues in China among young people within the age of 13 to around about 18 years old is quite substantial. Even in a small region, a rural region or a less developed region, there's about 15% to 17% of young people experiencing depression. Even higher percentage of young people experiencing anxiety, around 25%, and also around about 12% of young people reported in with stress.

Ellen Leabeater:

So sorry, that's 15 to 17% with depression?

Lawrence Lam:

Yes. 15 to 17% percent with depression. If they are staying in the major city, according to one of my study, the prevalence of depression is even higher. It could be as high as 20%.

Ellen Leabeater:

So depression as one mental health illness is higher in cities than in regional areas?

Lawrence Lam:

It is. In terms of the prevalence it is a general trend that depression is slightly higher among youth staying in the city area than in the rural area.

Ellen Leabeater:

Why is that?

Lawrence Lam:

Well, this is a kind of interesting feature coming up from the particular base in the Chinese data. Young people are in the rural area they tend to have a little more room and they are closer to nature. They tend to be a little bit less stressed. The young people in the city, they probably have been experiencing a higher level of stress. On top of that, the education system is quite ... more inducive of exerting pressure and stress on young people in the city area, rather than the rural area. Now whereas in Australia we have the reverse picture. Youth in the rural area actually experience a higher level of anxiety and depression.

Ellen Leabeater:

That's really interesting that in Australia that's flipped so that the prevalence is higher in rural areas than in city areas. Will that have to do with access to services?

Lawrence Lam:

Yes, it's absolutely related to access issue and resource issue. Young people staying in rural areas they are less resourced, and also they actually have experienced great hardships in terms of less infrastructure, less support, less counselling services and less healthcare support and all this actually contributes to this overall stress.

Ellen Leabeater:

What about in China? What are the resources like in those more rural areas?

Lawrence Lam:

In fact in China this is a very similar picture. Rural area has always been less resourced in comparison to big city, just because of the economic development in the rural area are much slower and also in terms of infrastructure, in terms of overall support. Certainly the government will put more resources in the developing area to support the development. In that sense it is actually quite detrimental for young people in the rural area. On the other side, they have a high chance of being closer to nature, being closer to a different lifestyle and so that may actually have a balancing effect. The figure that I quote actually is actually based on a study conducted in the western part of China. This particular province is called Guangxi, which is the western part of Guangxi that a lot of people would know about. The city is actually quite a semi-rural to rural area. Not to mention that they do actually have big cities like the capital city of Guangxi province, the Nanning city, which is the city that I'll be conducting the project in.

Ellen Leabeater:

In this particular region that you are looking at, this semirural and rural area, what exactly are you hoping to do? You've got an education programme you are about to roll out, is that correct?

Lawrence Lam:

Exactly. The basic idea of the whole programme is actually to target those frontline people who will, definitely will be teachers, high school teachers, primary school teachers, as well as some of the health professionals. We are not intending to train them as let say, mental health professionals, but just to give them enough knowledge and understanding and skills so that they will be able to first of all identify some of the mental health signs and symptoms among young people. Then on top of that we will like them to be able to have the basic skills not to be fearful and scared about approaching those young people if they do exhibit some sort of problems. They will be able to approach them at least to offer some of the initial help. For example, just to be an active listener.

Ellen Leabeater:

So for example, if I was a young person in high school and my personality changed, I started becoming a bit more withdrawn. The teacher would be able to recognise that and speak to me.

Lawrence Lam:

Exactly. This is exactly what we would like to achieve. Let's say for example the class teacher may be able to pay a bit more attention and be more sensitive, basically, be more sensitive to their students and they will be able to pick up clues and some basic signs and symptoms from their students and say, "Hey this particular individual may feel a bit down these few days, or even for a period of time." They will be able to go and say, "Hey, are you okay? Would you like to sit down and have a chat with me?" From then on that will be the starting point and maybe they'll be able to pick up more clues through the conversations. That in fact will be a very good approach to what we call early intervention and prevention approach.

Ellen Leabeater:

Is there anything like this -- do teachers get any training in China around mental health?

Lawrence Lam:

Well, they do actually have some basic training but not in a systematic way. The way that we are going to approach is we need to adopt the Mental Health First Aid model that's been developed and designed in Australia. This model has been sort of now duplicated and has been promoted in a lot of different countries. While we are saying that we are going to provide the training we are not just adopting or duplicating the full model. The whole model of the Mental Health First Aid or the youth Mental Health First Aid. There will be some translation and then adaptation into the local culture and that is the reason why we have been working with our partner in China, particularly this group in the Guangxi Medical University, of looking into the local issues and how would we be able to adopt and translate the Australian model into China.

Ellen Leabeater:

Lawrence Lam, professor of Public Health at the University of Technology Sydney. If this discussion has raised any issues with you, please call Lifeline on 13 11 14.

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On 2SER 107.3.

Ellen Leabeater:

You know that horror movie trope where you walk into a mad scientist's lab and it's full of human specimens, severed limbs, brains floating in jars, that sort of thing? Turns out those sorts of labs aren't the place of fiction. They actually exist and they're called biobanks. Think of them as human libraries which store research samples, ranging from blood to bone marrow and brains. Pair these human libraries with big data, and biobanks around the world are able to connect to create global research networks. Sam King joined Dr Paul Mason from the University of Sydney to take a look at the future of these vital research tools.

Dr Paul Mason:

A normal bank would be where you store money. Biobanks are large repositories of biological samples and those samples can come from humans, animals or even plants. A lot of people heard of the Seed Vault in Norway, where they've got seeds from all across the world that they're storing for future populations. So that's one example of a biobank that stores biological samples from plants. In recent years there's been a large push to create large biobanks like global biobanks with human biological samples. These could be human tissue, could be blood samples, DNA samples, could be any kind of ... could even be organs. There's brain banks for example where they do research on for example Alzheimer disease and for future populations we hope that these biobanks will become a resource for data analysis and perhaps even drug discovery.

Sam King:

I'm imagining like fluorescent lights, lots of plastic and sort of ... If you step into one can you visualise it for me?

Dr Paul Mason:

Sure. There are biobanks where you would have these large, almost like a library of samples that you would pull out from freezer stored cabinets. Now that biobanks are going global and are also going a bit virtual, you can have these small collections stored in numerous sites around the place. Pulled together in a central data base; an IT data base.

Sam King:

I imagine that's been made possible through the big technological breakthroughs like big data and storage and that sort of thing. Can you talk about how that process is going? Networking these biobanks together?

Dr Paul Mason:

Sure. Big data and biobanks do go hand in hand. Biobanks are one vehicle through which big data is becoming a global, exciting phenomenon. These networks can pull together resources from numerous countries. For example, there are biobanks in Latin America and in Europe that pull together biological samples from humans from numerous different countries that participate in unions such as the European Union. There are also biobanks that centralise their resources so they might have financial operations run through the UK and then sample collection conducted in China and then the storage facilities located in a different area of China for example. There's numerous different ways that biobanks can go global and this of course has certain ethical consequences that flow on from that.

Sam King:

Before we touch on that I wanted to ask, have there been any massive breakthroughs made possible specifically through biobanks?

Dr Paul Mason:

To answer that question we have to really expand our frame of what a biobank is. The collection and storage and analysis of biological samples is central to a lot of basic science research. When this is being conducted on small populations that has had certain benefits, and in fact, for example research on animals whether you like it or not, has contributed to perhaps extending human longevity by more than 20 years. I would say that there have been a lot of discoveries made through biological sample collection, storage and analysis. The hope is in that having these massive repositories in global biobanks we can really enhance the rate of discovery and the amount of discovery.

Sam King:

That's the good stuff. What about the ethical dilemmas you mentioned?

Dr Paul Mason:

In going global, there are numerous ethical dilemmas that we need to think about. One is what happens when a sample is collected in one country and stored in another country. What is the right of the donor in that instance to withdraw their tissue or to have access to their tissue or to benefit from the findings done on their tissue? The other big question that is in everyone's mind when I think about biobanks and in every specialists mind, is informed consent. How can you ask a potential donor to give a biological sample if you don't know what that sample is going to be used for? That's a huge ethical question. There's numerous other ones but the other one ... The last one I would like to flag, is these biobanks are really costly endeavours. They're multi-million dollar if not billion dollar projects. If you have such a costly endeavour and you're investing so much money into it, how do you insure its sustainability and longevity? There is a great potential for these biobanks to then be sold onto pharmaceutical companies with commercial interests.

Sam King:

Right. If you donate your tissue to it and then it's sold to a pharmaceutical company --

Dr Paul Mason:

Yeah exactly.

Sam King:

--what's the deal?

Dr Paul Mason:

Well, with informed consent do people consent to that upfront? This has to be looked at in two ways. Pharmaceutical companies can really help to drive the data analysis from what we're collecting in these huge biobanks. On the other hand, they do have commercial interests. They might be able to accelerate the data analysis and discovery, but on the other hand the distribution of benefits might be compromised.

Sam King:

I want to touch on something else as well. I read this study, it comes out of a university in Sweden called Uppsala University. They found that little length of time that a blood sample has been stored in a biobank might affect test results on the blood as much as a factor like the donor's age. They're finding just now that storage time is a massive factor when it comes into these tissue samples. How can we ensure that research conducted using biobanks samples is as sound as possible?

Dr Paul Mason:

This is a fantastic question and that is one example of how data collection and storage across different countries can adhere to a different standards of practice. There are numerous ways in which the quality of tissue can be affected through the reagents used, the storage temperature, the facilities, human handling. Across countries, once you have divergent standards of practice, this potentially does harm what we call the veracity of the research findings. Veracity means the dimension of truth that we can get from these ... and the robustness of the data we are analysing.

Sam King:

How do you prevent against that? Does there need to be a central body ... I know this is all speculation, hypotheticals. In your opinion, what's the best way to control the quality?

Dr Paul Mason:

For one research like this projects from Uppsala University is really important to understand how tissue changes over time as it is stored under stable conditions. That's one dimension of understanding how to account for the degradation of tissue or changes that occur over time. The other one is to have standardised practises of data collection and storage across different settings if they are contributing to the same biobank and to be absolutely transparent about those processes, so that they can be factored into analysis in the most robust ways possible.

Sam King:

What is the true potential of this technology? Give it a decade or two, where do you see this going?

Dr Paul Mason:

Biobanks for big data researchers are absolutely fascinating and really exciting because if you want to do clinical trials you've got to go through a lot of hoops to get to the point where you can test for example a drug or a surgical procedure upon a population of patients. The beauty about biobank research is that you're doing it on a ready-made population of samples. Now it's not the same as clinical research and I'm certainly wary about letting biobanks to have a monopoly over research practises, but they're going to be a very useful resource for future populations.

Ellen Leabeater:

Dr Paul Mason, research fellow from the University of Sydney, ending that story by Sam King.

You're listening to Think:Health on 2SER 107.3. Online at 2SER.com or on your favourite podcast app.

It's common knowledge that vaginal birth is more beneficial for mums and bubs than a caesarean section. Yet Australia still has one of the highest caesarean rates in the world. Part of the problem is that once you've had one caesarean section, there is a perception in the healthcare system that you can't have a vaginal birth for your second or subsequent baby. Maralyn Foureur is a professor of Midwifery at the University of Technology Sydney. She has looked at how midwives and obstetricians view the practicalities of vaginal birth after caesarean section, also known as VBAC.

Maralyn Foureur:

Caesarean section does have a number of risks. We think it's incredibly safe because we've had decades of undertaking caesarean section with very good anaesthetic so that the woman doesn't experience any pain. Usually the situation has been, when we've had relatively small numbers of caesareans that mother and baby are fit and well at the end of the procedure. That's what we aim for. That's when the rates were around under 15%. These days our rates of caesarean section have risen so high, over 30%, that we're now seeing that there are actually complications to the caesarean section operation that we hadn't possibly encountered when the numbers were so small.

There are now many studies that have established that caesarean section has a number of risks associated with it. Not only to the mother, but importantly to her baby that will affect short term and long term health for both of them. Caesarean section is not without risk therefore it behoves us first of all to try to limit caesarean sections to only cases where it's absolutely needed. Given that one of the main contributors to our rising caesarean section rate is a repeat caesarean, because you had one the first time, we need to encourage more women to try for a vaginal birth even if they had a caesarean section the first time around.

Ellen Leabeater:

This is where your study, Vaginal Birth After Caesarean Section comes in. You've looked at how midwives and obstetricians view VBAC. Was there a difference between the two groups?

Maralyn Foureur:

Generally, both of the groups said that they were very supportive of women choosing a vaginal birth after caesarean section. Largely this was in the light of current policies, particularly the New South Wales Health Towards Normal Birth policy which has given a lot of support to the idea that attempting a vaginal birth after caesarean is an important choice that women can make and they can make it safely. While the risk of a problem with the previous uterine scar is there, it is a very, very small risk that anything might happen.

Ellen Leabeater:

What's the uterine scar?

Maralyn Foureur:

Okay. When you have a caesarean section obviously the abdomen is cut on the outside, but then the uterus is cut on the inside of the women's body in order to get the baby out. After the operation the uterus is stitched together again and then the abdomen is stitched together. The big fear has been that in a subsequent pregnancy, labour and birth, that scar on the uterus stretches because the uterus is stretched with the large baby inside of it. Also, the very act of the uterus contracting during labour might make that scar stretch further. In a very, very, very small number of cases that scar can start to actually separate. If it separates to a large degree, before the baby's actually born, the baby might be born into the mother's abdomen. This is called a uterine dehiscence or rupture.

Ellen Leabeater:

That's pretty gory.

Maralyn Foureur:

It's well, it's not that gory, but it's of great risk to the baby because the baby can't really survive outside of the uterus inside the mother's abdomen for any length of time. You would have to have an emergency caesarean section in that case or an emergency abdominal procedure to rescue the baby.

Ellen Leabeater:

But you say that's very rare.

Maralyn Foureur:

Well, the rate of uterine scar dehiscence which is potentially a small or a large separation of that scar is around 2 per 1,000 women, so it's pretty unusual for it to occur. It depends on your perspective. From a science perspective that rate is about the same that you would find in women having their first baby.

Ellen Leabeater:

Right. So otherwise, in normal pregnancy the uterus can rupture?

Maralyn Foureur:

Yeah.

Ellen Leabeater:

Are these the sort of conversations that midwives and obstetricians are having with women who are having a second baby after a caesarean section?

Maralyn Foureur:

Absolutely. It's very important to give very accurate information to the women about not only the potential benefits of vaginal birth, but also the potential risks of attempting a vaginal birth after a caesarean section so that they can weigh out the risks and benefits for themselves. We need to do it in a way that the language is not fear inducing. We actually try to not use words like, rupture, which sounds pretty --

Ellen Leabeater:

Or gory?

Maralyn Foureur:

Or gory. I'm certainly glad that's your word not mine. We try not to use language like that, but just try to explain what a scar dehiscence means and it can be relatively minor. We use hopefully, fairly neutral language but accurately describe what the potential risks are. Also what the potential benefits of a vaginal birth are and many women who've had a caesarean say, "I'd really like to be able to have an experience like my friends where they're up and about the next day and they're feeding the baby and carrying on as normal. Whereas I was really quite disabled for some time after my caesarean."

Ellen Leabeater:

You can't even drive after a caesarean.

Maralyn Foureur:

Yeah. You're usually advised not to drive for at least six weeks. I don't know many women who obey that, but that's what women are told.

Ellen Leabeater:

The midwives and obstetricians in your study, were they confident in giving women the option of a vaginal birth?

Maralyn Foureur:

Yes they were. Certainly the ones that participated in our research. Of course you always have to consider that they might have been just telling you what they thought you wanted to hear. We talked for quite a while and generally speaking it seemed like they were very comfortable with the idea that it was quite acceptable for women to choose a vaginal birth after a previous caesarean section. I'm very happy to support women doing that.

Ellen Leabeater:

For women who do decide to have that vaginal birth after caesarean section, how many of them are actually successful?

Maralyn Foureur:

Well, some studies vary but the rate's generally around about 70% are going to be successful if you have a go at vaginal birth next time.

Ellen Leabeater:

One of the things that jumped out for me was a comment from a midwife about her saying to one of her patients, "You have to own the decision that you make." What happens between those 40-42 weeks that can often change a women's decision?

Maralyn Foureur:

Yeah. Of course she's going to meet people who may not be as positively predisposed towards attempting a vaginal birth after a previous caesarean section so she will maybe find a friend who's had a caesarean or attempted a vaginal birth next time that wasn't successful, so she'll get negative feedback. I think women when they discuss these kinds of numbers with their friends, if they're aware of them, for some people a rate of around 2 per thousand would be incredibly low. Therefore there are other people for whom this kind of a risk sounds incredibly high. You'll either sit on it's ‘low’ from my perspective, or it's ‘high’. You have to make up your own mind what kind of a risk you're willing to take.

Quite often it's their partners who don't want to see them going through another labour and experiencing the disappointment of a caesarean section at the end of a labour that doesn't progress the way that it needs to. They’re going to meet potentially lots of negative comments during the course of their pregnancies. If they are keen to choose, attempt a vaginal birth after caesarean section it's great to be able to say, "Yep. That's what I'm doing and I'm committed to ... That's my course of action." Of course it's always possible and reasonable to at the last minute say, "No, I've changed my mind. I don't want to do this. I'll have a caesarean." We respect women's choices no matter where in the course of their pregnancy they're making that decision.

Ellen Leabeater:

Maralyn Foureur, professor of Midwifery at the University of Technology Sydney.

If you'd like to find out more about that story or anything else you've heard today, head to our website 2SER.com/ThinkHealth. If you've enjoyed today's show, make sure you subscribe so you won't miss a moment. While we do our best to present valid research, journalists are not doctors. Go and see your GP if you have any concerns. Think:Health is produced with the support of The University of Technology Sydney and 2SER. I'm Ellen Leabeater, see you next week.