MyData: Personalising the Curriculum

Recently I presented DNA: Personalising the Curriculum at the WHAT IFEmbracing 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.

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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. 

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Garber, Kathryn B., Katherine M. Hyland, and Shoumita Dasgupta. Participatory Genomic Testing as an Educational Experience. Trends in Genetics 32.6 (2016): 317-320.

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.

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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?

Please read this for more background and recommendations.

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

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2 Comments

  1. jeffmason:

    When I first saw the link to the blog post I thought, oh, good, someone else is concerned about privacy and personal information for students.
    Great!
    And as it starts, the thesis “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”, might lead you to believe this would be so.
    As I read further I realize that the original call for critical thinking around personal data degrades into a fall for the latest phishing scheme in the name of personalizing the curriculum.

    Phishing scheme: whereas, in response to a request, from what seems to be a reputable entity, you voluntarily turn over personal data. Once that entity has your data they then exploit it for profit themselves or bundle it and sell it off to the highest bidder. Either way the security and rights to what was once personal, private data has now been lost. In this case, the supposed reputable entity is a DNA testing company and the personal data is your genome.

    I would assume that the students that participated did so with parental consent, but I also assume that the testing would not have occurred except for the request from your classroom.
    So I do wonder what pre-activity discussion occurred in relation to risk/benefit as it relates to the use and abuse of personal data. I would think that discussion may have included any of the following questions:
    Who is this entity and exactly what personal information are they requesting of me for their service and how will they use it/store it/protect it?
    If a company is willing to violate one component of its privacy policy, such as collecting personal information from minors (Helix), what other privacy policy items are they likely to violate?
    Do I want to send my personal information to a company whose business model is based on venture capital and whose only asset is the data I and others submit to them?
    What happens to my genomic data if third parties are granted access?
    What happens to my genomic data if the entity goes bankrupt (Decode)?
    What happens to my rights to my data? Do I grant rights to use my data in perpetuity as I do to Facebook and Youtube?
    What rights do I have if my data is used to generate income for the entity beyond the original enterprise? e.g. gene products, drugs, therapies Do I profit as well? Does the use of my genomic data in this way make me liable?
    Beyond knowledge of some single-gene disorders, can the genetic test results provide me with immediately accessible actionable health information that is not otherwise available through current health channels that do not require me to surrender my genetic data.
    Am I sufficiently supported enough to emotionally deal with the results of my test?

    There may well have been some critical thinking involved in the decision making process and I am heartened by the fact you mentioned that some students chose not to participate.

    There are a number of lab activities in the biological/health science classes that will allow students to collect personal, actionable data which make it possible “for young people to manage their health and wellbeing. ”

    While I do support the addition of “this kind of knowledge as a component of any K-12 framework scaffolding student learning about personal data”, I do not support the use of DNA testing in the classroom. Not because it’s “in the too hard basket”, not because it’s “Orwellian” but because in its current unregulated state, the risks to data privacy far outweigh the gains to a “personalized” curriculum.

    To paraphrase Ian Malcolm in Jurassic Park, “Your scientists (teachers) were so preoccupied with whether they could, they didn’t stop to think if they should.”
    …and we all know how that turned out.

    • Darcy Moore:

      Hi Jeff,

      I understand and share your concerns about DNA analysis and schooling. You are correct to say that in the “current unregulated state, the risks to data privacy far outweigh the gains to a “personalised” curriculum”. Education is the key to having an educated populace who advocate for changed legislation and greater understanding.

      This was always going to be a controversial post but I am thinking through what is possible, desirable, unavoidable, sensible and ethically sound. What I posit in the post is to do with schools dealing with what is a reality now – that our systems do not adequately address learning about personal data in an era where so much of it is generated and technology makes what was previously unknowable known/knowable.

      In short:
      1. Our edu-systems need to teach students about personal data in a structured way across the span of their school lives (as I detailed in the post)
      2. I am advocating that all students learn about their personal data in a holistic way (not that they all have DNA tests – although I see the benefits and challenges, including your comments about emotional maturity)
      3. I am advocating that students have the opportunity – again, with parental approval – to have non-medical DNA tests as an interesting way to understand science, human origins and our shared humanity
      4. Our local university funded a non-medical DNA analysis for students in my Big History classes (in the context of the decade+ long population genetics project funded by National Geographic). Parental approval was gained after a briefing.
      5. It is essential that all students learn about personal data (which would allow them, for example, to reject the idea of using DNA testing to assist with wellbeing or identity)

      I do not perceive my post as ‘phishing’ but felt deeply concerned that you do. I have no product to sell or personal financial gain. I do believe that the latest technology could be used to serve our community BUT am deeply concerned at how data is used in education (and generally). If you read closely the Finnish model I link too/mention it reveals that the key issue is putting the individual in charge of their own data/destiny.

      Our society(ies) really need to re-think the commercial use of data and also issues around health, privacy, insurance and equity. It is a very important issue and ‘school’ cannot just wait to see how it all pans out. We need to engage, as educators, to help shape the future.

      Thank you for leaving such a thoughtful comment.

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