These days, massive volumes of data about us are collected from censuses and surveys, computers and mobile devices, as well as scanning machines and sensors of many kinds. But this data can also reveal personal and sensitive information about us, raising some serious privacy concerns.
Data are routinely collected when we shop, use public transport, visit our GP or access government services in person or online. There’s also data from using our smart phones and fitness monitoring devices.
These data are generally collected for a purpose, called the “primary purpose”. For example, having purchased goods delivered, catching a bus from home to work, having a health check, obtaining a Medicare refund, navigating or searching our local area, as well as logging our fitness regime.
But in addition to being used for such primary purposes, many data are stored and used for other purposes, called “secondary purposes”. This includes research to help inform decision-making and debate within government and the community.
For example, data from Medicare, the Pharmaceutical Benefits Scheme and hospitals can be used to identify potential adverse drug reactions much faster than is currently possible.
What about privacy?
But these data can also reveal highly sensitive information about us, such as about our preferences, behaviours, friends and whether we have a disease or not.
Given the rapid change in the volume and nature of data in the digital age, it is timely to ask whether the existing ethics frameworks for the secondary use of such data are still adequate. Do they address the right ethical issues associated with research using the data? In particular, how will an individual’s privacy be protected?
There have been two important responses to these issues. A group of researchers, supported by the University of Melbourne and the Carlton Connect Initiative, explored these issues through workshops, desk research and many consultations.
They produced the Guidelines for the Ethical Use of Digital Data in Human Research. It’s a work in progress, requiring ongoing practice and revision, rather than a definitive set of prescriptions.
A team at CSIRO and the Sax Institute also addressed the deeper ethical issue of protecting privacy in the secondary use of health data. This work will be developed into Guidelines for Confidentiality Protection in Public Health Research Results.
Ethical issues for digital data
In the first of the guidelines, five key categories of ethical issues are identified as highly relevant to digital data and require additional consideration when using digital data.
- Consent: making sure that participants can make informed decisions about their participation in the research
- Privacy and confidentiality: privacy is the control that individuals have over who can access their personal information. Confidentiality is the principle that only authorised persons should have access to information
- Ownership and authorship: who has responsibility for the data, and at what point does the individual give up their right to control their personal data?
- Data sharing – assessing the social benefits of research: data matching and re-use of data from one source or research project in another
- Governance and custodianship: oversight and implementation of the management, organisation, access and preservation of digital data.
The voluntary guidelines were developed to help people conducting research and to assist ethics committees to assess research involving digital data.
Without such guidelines, there is a risk that new ethical issues involving digital data will not adequately be considered and managed by researchers and ethics committees.
Privacy risks from the data
Traditionally, the data custodians responsible for granting access to data sets have sought to protect people’s confidentiality by only providing access to approved researchers. They also restricted the detail of the data released, such as replacing age or date of birth by month or year of birth.
More recently, data custodians are increasingly being asked for highly flexible access to more and more details about individual persons from an expanded range of data collections.
Custodians are responding by developing a new flexible range of access modes or mechanisms, including remote analysis systems and virtual data centres.
Under remote analysis, a researcher does not have access to any of the data but submits queries and receives analysis results through a secure webpage.
A virtual data centre is less restrictive than a remote analysis system. It enables researchers to interact directly with data, submit queries and receive results through a secure interface.
But the results of statistical analysis as released by a virtual data centre may still reveal personal information. For example, if a result such as an average is computed on a very small number of people then it is probably very close to the value for each of those people.
By following such voluntary guidelines, researchers can maintain confidentiality while ensuring that society can benefit from their work.
The rapid technological advances in our society are creating more and more data archives of many different types. It’s vital that we continue to assess the ethical and privacy risks from secondary use of this data if researchers are to reap the potential benefits from access to the information.
This Anzac Day, Australia and New Zealand commemorate 100 years since the beginning of WWI’s Gallipoli, a campaign famous for its heroism and infamous both for its terrible death toll and the horrific conditions on the battlefield.
Despite generations of war veterans developing mental health issues as a result of their service, it was not until 1980 that post-traumatic stress disorder (PTSD) was formally recognised. Even today, PTSD remains a misunderstood, misdiagnosed condition, for which there is no widely effective treatment.
Currently diagnosis of PTSD in the military relies on paper-and-pencil tests and screening interviews by psychologists who assess servicemen and women pre-deployment, pre-extraction and post-extraction.
Now, researchers are turning to brain-imaging to improve their understanding of the condition. They’re trying to identify the physical characteristics that may help explain why some individuals subjected to trauma develop PTSD, while others exposed to identical trauma do not.
“You can be in the same armoured vehicle and only one of the four in the vehicle will subsequently develop mental health issues,” explains Miriam Dwyer, CEO of the Gallipoli Medical Research Foundation.
“When it comes to breaking your arm, we know how to fix it; or if you have blood-pressure issues, we can sort that out. But when it comes to mental health issues and the brain, we have a long way to go.”
Miriam is excited to see the outcomes of a major study by the Gallipoli Medical Research Foundation into the physical health and genetics of 300 Australian Vietnam veterans. Of the 300, half have PTSD, and half do not; and in a sub-study, 100 of the veterans (50 sufferers and an equal control group of non-sufferers) have undergone MRI brain imaging.
Stephen Rose from CSIRO is charged with analysing the 100 sets of images.
“We’re looking at the volume of particular parts of the brain that may predispose individuals to PTSD, believed to be the hippocampus and the amygdala, which are in the temporal lobe and some frontal lobe structures as well, particularly the anterior cingulate. These parts of the brain seem to be very vulnerable to injury, which may predispose people to PTSD, especially in the military,” he says.
“We can measure the volume of these regions of the brain very accurately and look at cohorts of Vietnam veterans who have PTSD, and compare those with cohorts of Vietnam veterans who don’t have PTSD. That may give us some insight into whether these parts of the brain are associated with PTSD, or predispose people to developing it.”
The study is also measuring the brain’s white-matter tracks using a combination of diffusion imaging and a technique called tractography to see the effect of mild traumatic injury on the brain.
These kinds of invisible injuries are prevalent in the military and can occur, for example, when a soldier is near an explosion, even if there is no observable physical injury.
“What is postulated is that having a mild head injury may increase the accumulation of toxic material in these vulnerable parts of the brain, and may increase the risk of people going on to have PTSD. There’s a lot of interest from the military in measuring these subtle brain injuries.”
Tracers developed by GE are also being used to study biochemical changes inside the brain that indicate either short- or long-term damage to brain tissue, which may be the beginning of a disease developing. These enable specialists to look for ‘hotspots’ in the brain, which previously was only possible post-mortem.
Stephen stresses that the team’s research is in its early days, but he’s excited by its potential to help.
As Miriam says, “we understand the consequences from a psychological perspective of PTSD, but not the specific causes”, which is why this research is so important.
“We know what the symptoms are when you develop PTSD, but the treatments are still not great. The standard treatment is exposure therapy, and that works well in about one-third of patients; doesn’t work at all in another third and it can actually have a negative impact for some patients if delivered incorrectly.
“There aren’t any very good drugs in development for PTSD, probably because of the complex combination of emotional, cognitive, behavioural and biological symptoms. We’re still really trying to understand how we can effectively engage and treat all sufferers—not just one-third.”
This is an edited extract from GE Reports. Read the full feature here.
EDITOR’S NOTE: APRIL FOOLS’!
How many times have you dreamed of having your own personal bank? A money maker in your very own garage, bedroom or kitchen that allowed you to, quite literally, create wealth?
Well, thanks to 3D printing – the same technology that’s brought us horse shoes, bikes, and dragons – those dreams are now one step closer to reality. Our scientists have developed a piece of software that will enable 3D printers to print their own money.
The software program, called P-YOM (Print Your Own Money), will allow consumers with currency in Bitcoin and other online money systems to print coins from their own 3D printers. Once downloaded, P-YOM will integrate with most existing commercial and industrial printers to provide an entirely new source of currency generation.
The development has come about following a partnership we recently entered into with the digital currency industry. The industry are looking to trigger a review of online currency by the Australian Tax Office, which decided last year to classify the online money as a barter system, not a recognised currency.
The digital currency industry works like any other national currency – it can be traded for a range of other national currencies at a fluctuating rate and exchanged for a range of goods and services.
But because it isn’t tied to any national financial system, consumers can make anonymous purchases anywhere in the world, making the movement of the currency hard to track.
“We knew of the great work CSIRO did in inventing waterproof bank notes for Australians, so we hoped they could help us create a water-tight currency,” said Ms Julie Kansas, of the online currency traders Rikers Online Financial Liquidities.
“We think if we can physically put our currency into the hands of a few officials at the ATO, they might change their minds,” Ms Kansas said.
Each coin will be electronically watermarked with an individual “barcode” which will allow it to be tracked via the internet.
Lead scientist on the project, Dr Alex Kingsbury, said the team were already seeing the benefits of the new technology.
“We’ve had a limited test run with P-YOM amongst our staff and they absolutely loved it,” she said.
“Three of them have gone on indefinite leave and we haven’t heard back from them since they last contacted us from the French Riviera.”
“We’re also working with the gaming industry on a 3D printer / poker machine prototype, that could literally create its own winnings. It’s a bit of a gamble currently, but we do hope it will feature heavily once we get it right.”
To purchase either the software or a 3D printer, email socialmedia[at]csiro.au
EDITOR’S NOTE: APRIL FOOLS’!
Ever wondered how hot your home gets in summer or how cold it is in winter? Think solar is a good idea but not quite sure if it would work on your roof? Wondering if it’s worth investing in a rainwater tank?
Now with a new interactive tool we helped develop called My Climate, residents of Melbourne’s City of Port Phillip can do their own internet-sleuthing to answer these questions. What’s more, this could kick-start a trend that would see residents around the country taking more responsibility for these types of decisions.
My Climate uses thermal mapping taken from aerial flyovers and seven temporary weather stations to show land surface temperatures, winter heat loss, rainfall and the solar potential of all buildings in the region.
Working with the City of Port Phillip and Monash University, we originally developed My Climate to inform urban planning decisions. It didn’t take long to realise how useful the data would be to the whole community.
“With this data you can calculate the most appropriate solar system for your home, where it would best be located and how much it could potentially save you in electricity costs and Co2 emissions. You can also measure rainfall and calculate the cost of improving your ceiling insulation,” Port Phillip Mayor Amanda Stevens says.
“If thermal imaging shows your neighbour’s home is cooler than yours, it may mean they have better insulation, or cool air from their air-conditioner is leaking outside the home.
“This easy-to-use tool has the potential to add real value to people’s homes and on a larger scale can help tackle the impacts of climate change.”
Dr Mahesh Prakash and his group from our Digital productivity Flagship helped develop the analytics and software component of the interactive tool. He says his team is now looking to expand My Climate to include other layers of information such as natural hazard hotspots and optimum tree coverage. He would also like to see it rolled out to other Councils.
Explore the My Climate tool on the City of Port Phillip website.
By Emily Lehmann
Oscar hype is in full-swing, and we all have our favourites for Hollywood’s night of nights (we must admit we are partial to Birdman taking home the ‘best picture’ gong). But the big-screen isn’t the only place to find world-class movies.
At our Discovery Centre in Canberra yesterday, we unveiled two world-class movies of our own. The animations, created by up-and-coming Australian biomedical animators, uses the latest data visualisation techniques to bring science to life in incredible 3D detail.
Created by Australian up-and-coming biomedical animators using the latest data visualisation techniques, they feature key research into Alzheimer’s disease and type 2 diabetes from CSIRO and the Walter and Eliza Hall Institute of Medical Research (WEHI).
Through narrated picture, the animations explain very complex biological processes related to each disease with scientific accuracy: zooming in on what happens inside our body but can’t be seen with the naked eye.
The animations illustrate key research techniques into Alzheimer’s disease and type 2 diabetes, based on work we have done with the Walter and Eliza Hall Institute of Medical Research (WEHI).
The first video looks at Alzheimer’s disease – the most common form of dementia – which affects one in four people over the age of 85, a number that will increase significantly as our population ages.
This animation takes you on a journey to the neurons of the human brain, revealing how normal protein breakdown processes become dysfunctional, and cause plaque to form during Alzheimer’s disease.
This build up of plaque in the brain can take decades and is one of the main indicators of the disease.
The Insulin Receptor and Type 2 Diabetes
About one million Australians currently live with diabetes and about 100,000 new diagnoses are made each year.
These staggering statistics are fuelling research efforts aimed at finding a cure or ways to prevent or better manage the disease.
Highlighting a recent discovery by WEHI, this animation focuses on the role that the insulin receptors play in the disease and what might cause resistance to the hormone insulin.
It’s part two in a series of animations on type 2 diabetes, you can check out part one here.
These are the second round of animations created through VizbiPlus – a joint project between CSIRO, WEHI and the Garvan Institute of Medical Research.
Under the guidance of internationally-acclaimed biomedical animator Drew Berry from WEHI, VizbiPlus is training-up the next generation of biomedical animators, to raise the bar in science communication and bring critical research to the world.
You can read more about our data visualisation work here.
By Andrew Warren
If you’re a regular at the gym or an early morning boot-camp fanatic, it’s possible that the first thing you picture when you think of protein is the powder you use to make your post-workout recovery shake.
But when our scientists discuss protein, they’re talking about the many thousands of molecules that act as the essential building blocks of life as we know it. Because proteins are so important to constructing life, researchers need a way to visualise the exact ways in which they fit together so that they can better understand the functions they play in our bodies.
With this in mind, a team of international programmers and bioinformaticians (think biology, computer science and maths mixed together) led by our very own Dr Seán O’Donoghue have created a new web-based tool named Aquaria that can create unprecedented 3D representations of protein structures.
Aquaria is based on the Protein Data Bank, an online resource which houses more than 100,000 structures of proteins that contains a wealth of detail about the molecular processes of life. But Sean and his teams were conscious that few biologists were taking full advantage of the site. The Protein Data Bank is designed for and by biologists who are expert in structures; however for most biologists, its organisation can be confusing.
So, they created Aquaria to make this valuable information more accessible and easier to use for discovery purposes.
Freely and publicly accessible, Aquaria can help scientists like ecologists, nutritionists and agriculture, biosecurity and medical researchers to streamline their discovery process and gain new insight into protein structures.
Sean’s team added additional layers of information (like genetic differences) to the basic protein structure and made it accessible in a fast, easy-to-use interface that’s visualised in a fully 3D environment.
“We’ve added protein sequences that don’t yet have a structure, but are similar to something in the Protein Data Bank,” says Sean.
“That meant we first had to find all these similarities. We took over 500,000 protein sequences and compared every one of them with the 100,000 known protein structures, and that has given us around 46 million computer models.
“For example, you can add Single Nucleotide Polymorphisms (SNPs) that cause protein changes, then visualise exactly where those changes occur in the protein structure. This provides valuable insight into why proteins sometimes completely change their function as a result of one small change in the DNA code.
“You can then ask interesting questions like ‘Does this set of SNPs cluster in 3D?’ and the answers to such questions can set new research directions.”
Aquaria was developed in collaboration with Dr Andrea Schafferhans from the Technical University of Munich, and is hosted with support of a grant from Amazon Web Services.
To learn more about Aquaria, you can take part in a special webinar scheduled for 9am Tuesday, 3 February (AEDST).