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An everyday sacrifice that saves lives

Behind every extraordinary advancement in medicine stand ordinary people who have volunteered time, blood and more for the greater good. David Gear speaks with some of those people who help drive science forward.

Think back to the last time you took medication.

You probably took it for granted that the treatment prescribed was both effective and safe.

But that medicine is not only the result of painstaking efforts of researchers — but also the persistent and sometimes painful efforts of ordinary people.

They are the willing participants in research trials who stand behind the medical miracle workers and they rarely get the recognition they deserve.

So who are the human guinea pigs, and why do they matter?

Before any new medical treatment, test or medicine can be added to the list of actions a doctor might take to detect, treat or manage a disease, it has to go through a clinical trial.

In Australia alone, there are around 1000 clinical trials that begin each year, representing a one billion-dollar investment in medical research, according to Austrade.

Each of these trials can involve 50 to 100 participants, for an early Phase I study of the safety of an intervention, to tens of thousands for a Phase III study, the final step before an intervention can be adopted.

Associate Dean of Research for ECU’s School of Medical Science Professor Mel Ziman’s career has relied on the generosity of research participants.

Her work has involved investigation of melanoma and Huntington’s disease.

Some of her latest research has led to a blood test that can be used to monitor patients who have previously had melanoma for relapses.

The test is an effective, safe liquid biopsy that can administered more easily than traditional scans. The journey to make the test available has involved studying more than 340 research participants and more than 1000 blood samples from melanoma patients before it can be offered in pathology labs — something Ziman hopes will happen within 18 months.

“We couldn’t do anything without them,” she says.

“It’s not just researchers who owe a huge debt of gratitude to the volunteers, but everyone who benefits from advances in medical sciences.

“I’m always astounded by the selflessness of our volunteers. They will often thank us for the work we are doing, when I feel that it’s us as the researchers who should be thanking them.”

Guinea pig
Research participants sacrifice more than their time for the greater good.

Motivated to help

Research participant Judith Newton says she can’t stand to watch a blood test being performed on TV.

“I look away any time a medical procedure is shown on TV,” she says.

“I’ve always hated needles. I can’t even bear the thought of it piercing the skin.”

Yet for the past five years, Newton has regularly had her blood taken and has even submitted to frequent lumbar punctures, which involve a large needle being inserted into the spine to take a sample of spinal fluid.

She does this as part of the Australian Imaging, Biomarker and Lifestyle Study of Ageing, a national longitudinal study that began in 2006.

The study aims to develop a way to detect Alzheimer’s disease in its early stages and also examine what lifestyle and diet factors may play a role in the development of the deadly disease.

Newton’s reasons for participating stem from her experience watching the deterioration of both her mother and best friend to Alzheimer’s disease.

“Mum was such a wonderful lady, she was always so active, always helping people and doing things for others,” Newton says.

“To see what it did to her — the state she was in before she died — words can’t describe.

“No one deserves that. No one should have to go through that. So if someone’s got to volunteer to do it, I’ll put up my hand.”

Newton worries about developing Alzheimer’s herself, but tries to remain philosophical.

“My attitude in life is you don’t spend energy worrying about things you have no control over,” she says.

“What I can control is helping to find a way to prevent or delay this horrible disease.”

Michelle Slabbert is another selfless volunteer helping to drive scientific research further.

Since being first diagnosed with melanoma in 2002, she has undergone eight operations to remove 10 tumours.

While this would be enough to turn most of us off having any more blood tests, she has donated her blood to ECU’s Melanoma Research group every six months for the past seven years, to help develop a test that can monitor melanoma progression.

The blood test allows doctors to monitor patients and get a real-time snapshot of tumour progression.

This in turn allows them to tailor treatment to individual patients.

Slabbert’s reasons for taking part in the study were twofold.

“Firstly, I want to be able to help people who develop melanoma in the future,” she says.

“I’m part of the wonderful MelanomaWA support group and it’s heartbreaking watching members pass away.

“Secondly, while I have been tumour-free for nearly six years, if I ever need medication and treatment I would like doctors to be able to give me the most effective treatment possible and the blood test they have developed will allow that.”

Going in with eyes wide open

A key component of the relationship between researchers and participants is built around informed consent.

A major element of informed consent is the participant having full knowledge of the potential risks and benefits of their participation before they agree to take part.

But what about studies into the health of young children that require the youngest possible participants?

How do you get informed consent from a toddler?

School of Medical and Health Sciences researcher Dr Therese O'Sullivan says that historically, it has been common for researchers to attain consent from parents, often ignoring the wishes of the child.

But when she and a team of researchers from ECU’s School of Medical and Health Sciences embarked on the Milky Way study, examining the health implications for children of low-fat versus full-fat dairy, they decided they wanted to do things differently.

“We were very conscious from the beginning of our study that we would inform our actual participants, children aged between two and four, as well as their parents, as much as possible,” she says.

“We have done this in a number of ways. We have developed a picture booklet for the children which explains the process of the study with pictures and in language they can understand.

“Another focus for us has been how we take blood samples from the children.”

O’Sullivan says that most studies take blood from children by distracting them somehow, and drawing blood quickly while their attention is focused on something else.

“This is something we were keen to avoid. We want the children in the study to know what is happening and why we are doing it,” she says.

“So we tell them when we are going to take their blood, and that it may hurt a little bit.”

Perth mother Genevieve McSporran says she was interested in her daughter Eva taking part in the research, believing food choices should be made based on evidence.

“Information is power and parents should be able to make informed choices about what they feed their children,” she says.

“So when I saw the study I had a look at the tests that were involved and I was comfortable with that. But I also had a chat with Eva about participating and she was keen because she is really interested in science.

“I think that she was a little bit chuffed to be asked to be part of a science experiment and to be able to see what scientists do as well as see how the information they gather can help us all be healthy.”


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