Recently I presented DNA: Personalising the Curriculum at the WHAT IF? Embracing complexity through curriculum conference which has reinvigorated my belief that we need to make some profoundly important changes to our approach to educating young people about their “personal data”. I asked the question: what if school empowered students to understand & use personal data?
Students should be well-educated about personal data. What it is, how it can be used and abused, where they can find it and how to protect it. Weighty concepts such as ethics, citizenship, civil society, freedom, commerce, regulation, privacy, paradox and the rights as well as responsibilities of living in a democracy should be introduced contextually along the way. These concepts are considerably more important than the essential technical skills and knowledge needed by the students to manage their personal data. A sophisticated, well-researched K-12 framework is urgently needed.
What is ‘personal data’?
Defining what is personal data, or personal information, is not clearcut but educationally, discussion about such problematic knowledge is essential for developing higher order thinking skills. It is useful to read what The Australian Information Commissioner says on the issue with this definition of ‘personal information’. Here is my incomplete list of what may possibly included (please add to what else should be considered in comments below):
– digital data created by the individual online
– digital data created and collected by others online
– medical/health data
– genomic data
– educational data
– employment information data
– financial data
– what is considered personal information by the individual and what the state has legislated
Technology enables insight into the previously unknowable for both the individual and others. These others include: governments, corporations, individual citizens, private and public groups. Individuals have an extraordinary quantity of data collected about them by the state and business which allows insight into the ways they live their lives. Students need to understand this and be educated to participate, as citizens in a democracy, in deciding what is ethical, legal and fair.
This education should commence from the earliest possible age. Educational documents exist that direct teachers to explore aspects of what would be considered personal data, in a range of subjects, but there is no clear overview that genuinely focuses on the actual personal data for an individual student to make the experience a holistic and authentic one. This should not be done piecemeal and it is important philosophically that students should be in charge of this learning, about themselves, as much as possible.
The level of sophistication possible with new and emerging technologies makes the kinds of learning found in traditional schooling look pedestrian even though the syllabus intent is good. Here is an example from PDHPE: a student “evaluates actions that enhance well-being and evaluates plans that promote their capacity to respond positively to challenges”. There are many ways a student could demonstrate their ability to evaluate but what data will they currently collect? Students are able to collect basic health data at school but what else is now available? The “what if” question is particularly interesting when we think about wellbeing and new technologies and research.
What is possible?
Doctors no longer just analyse blood and urine or measure blood pressure by taking a pulse to diagnose illness and disease. Sophisticated analysis of genomic data makes it possible that health outcomes can be improved with this new personal information. DNA analysis has become affordable as interest in population genetics and genealogy burgeons. Moore’s law suggests the affordability will increase rapidly. It makes sense that students are educated to understand the implications of this data. As citizens, they will also need to ensure that not just medical but also ethical treatment is provided for those whose genetic predisposition towards disease does not result in inequitable treatment, for example, by insurance companies.
Schools are regularly involved in vaccinations and other state health programs. In the future, it may be desirable for students to have opportunities for their own genomic data to be collected and analysed. Many parents and educators will baulk at this suggestion but it would save lives. What could be more important than students being educated to understand and enhance their own wellbeing? Personalising learning takes on a whole new meaning when students, at the appropriate age after following a sequential program of learning, are able to engage with this kind of information.
Last year, while meeting with Professor Eric D Green, Director of the National Human Genome Research Institute in Washington, I asked him about the potential and importance of students learning about the health implications an analysis of their genome. Professor Green was in favour of students learning about this by using personal and family data. He would have not had the same position when commencing his current job a decade ago but advances in the field have been so swift and wide-reaching that our education systems must adapt.
“Darcy, you are skating to where the puck is going to be…” Professor Eric D Green
The issue becomes how do we do this ethically, responsibly and at scale? It makes sense to include education about this kind of knowledge as a component of any K-12 framework scaffolding student learning about personal data. The decision whether authentic, personal data is collected and employed or if it is theoretical learning can be made at a later date as technological potential and ethical implications are debated.
What is happening in other countries?
In Finland, a government white paper exploring a “Nordic model for human-centred personal data management and processing” is an example of absolutely inspirational political and practical leadership. The ethical and technical framework being developed will make it possible for educators to develop programs supporting citizens to understand the law of the land and participate as informed, empowered citizens.
In the USA, a number of interesting academic papers, programs and educational innovations can be explored. For example, participatory genomic testing at a tertiary level, for those completing formal qualifications for careers in the health and wellbeing industries, is well underway. These students participate by having the experience some of their patients will have of receiving personal genomic data rather than their knowledge coming from just theoretical lessons. Potentially, some students have the need and opportunity to undergo counselling.
What is currently possible?
My own classes participated in non-medical DNA analysis, as part of a citizen science population genetics project for last three years. I cannot say I was inspired by the work of Professor Mike Hickerson, who conducted such a study involving his students in New York, as I did not know about it until after my classes had done something similar but can say, when I visited him to discuss the project, he really stimulated my thinking about where we are headed as a society. We all know that knowledge is growing exponentially but very few people have a good understanding of how quickly the fruits of these advances can be used to improve educational standards, life and wellbeing for large numbers of people.
If there is an antidote to racism it is knowledge. These two videos are really worth viewing. Each time I have shown them to students, teachers and parents there is a powerful response. If there is an antidote to the feelings of not belonging many of our students experience it will not just be about having knowledge, it will be about having deeper levels of understanding of who we are and how we are all connected as the mists of our human origins clear. At some stage I will post my own story about what government, DNA and discovering withheld data has revealed in my life and the positive impact on wellbeing of having knowledge about personal information (and will link here).
The way forward?
What if school empowered students to understand & use personal data?
It would be possible for a parent or educator to read this post and grow concerned what is being advocated is “Orwellian“. Students providing DNA data or even exploring ‘personal information’ at school in the way suggested may seem invasive. Much of what this framework would cover is not controversial at all but a sequential approach to giving pertinence to civics and citizenship and health studies with a strong focus on a more sophisticated approach to digital citizenship. We have only just started to understand how technology is changing many aspects of the personal and the public. MyData, as an educational framework, is intended as education empowering students to understand what data is available. They will need to decide, at the appropriate age and in consultation with parents, about how they decide to go about this learning. One can imagine a MOOC with options for students to explore as opposed to some kind of mandated insistence on any particular avenue. Theory can be complemented by practical opportunity. For example, not all of my students participated in the population genetics study but all benefitted from seeing how it worked.
It will be very easy for politicians, bureaucrats and educational leaders to ignore or even ridicule the basic idea that students should be able to access authentic data listed in this post as part of their learning. I fear it will be very easy to put all this “in the too hard basket” but after attending the Brain Science Roundtable at the office of The Advocate for Children and Young People it is abundantly clear that our policy decisions in NSW are not matching what science makes possible (and in fact essential) for young people (as well as systems and citizens) to manage their health and wellbeing.
In short, our education system could be genuinely instrumental in all of us taking a more sophisticated approach to transforming lives based on data. Personal data.
What would an action plan look like for this to happen and be bedded down in the education system? Do the health, education, family and community services, innovation and better regulation ministries need to collaborate with the Attorney General and produce a white paper exploring what is desirable? Or, as ever, good policy follows good practice, and educators start/continue making this work, following existing guidelines, to innovate and provide opportunities for our students?
What do you think? Even better, what are you doing to empower students to understand & use personal data? What could it look like at school?
Feature image: courtesy of C_osset