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Opinion: Why NFPs should lead the charge on informed consent

Not-for-profit organisations are realising that a clear, easy and transparent consent process can also inspire trust and new levels of user engagement

In April this year, Facebook’s founder and CEO, Mark Zuckerberg sat in front of a joint hearing of the US Senate’s commerce and judiciary committees.

The world’s media watched on as Senator after Senator grilled the Facebook billionaire and philanthropist on how he had allowed the improper ‘harvesting’ of more than 85 million Facebook users’ personal information without their consent.

In a statement that made headlines internationally, Zuckerberg acknowledged that one of his “greatest regrets in running the company” was being slow to act against the companies who used personal Facebook data to interfere with elections and democracy across the globe.

Hidden just beneath the surface of outrage around the improper use of Facebook’s user data is the issue of informed consent.

What has become clear is that there is still a great number of people using social media and other platforms who don’t realise just how much of their personal information becomes the ‘property’ of service providers.

Anyone using phones to access apps and platforms is usually trading data for that service; everything from personal contacts, photographs and GPS tracking information. How that data is shared with other service providers and for what purpose is usually hidden within the small font in the pages of Terms and Conditions that most of us don’t read.

Caitriona Fay

The growing chorus of voices are therefore asking “if those providing digital platforms were forced to clearly and simply outline how much of our data they can access and how they intend to use it, would we still choose to use their products?” That tension is at the heart of informed consent.

While profit making organisations may be fearful that informed consent will lead people to opt out, many non-profit organisations are realising that a clear, easy and transparent consent process can also inspire trust and new levels of user engagement.

There is no sector that trades more in trust than the community sector. This is why non-profit boards must turn their eye to how their organisation is investing in the culture, infrastructure and governance structures required to ethically protect, store and use digital data.

Sage Biometrics has demonstrated that a deliberate commitment to a clear and transparent consent process, and into what is being collected, can in fact inspire confidence and engagement. Australia’s not-for-profit sector is in a unique position to both protect the trust they have already established from the community and draw on that trust for the benefit of their mission.

Sage Bionetworks is working with a team from the University of Rochester Medical Centre, and together they have launched the world’s largest Parkinson’s research project, with more than 15,000 participants globally. The project collects data via an app from iPhones on how much the phone user walks and exercises, in the hope of better understanding the link between the disease and exercise levels.

Why the app has attracted so many research participants is partly due to the informed consent process that all users must go through to engage with the app. Rather than reading through pages of Terms and Conditions, the user must shake their phone, speak into the microphone and walk around; doing all the actions and activities that create the data that the researchers intend to collect.

While this process is by no means perfect it gives every user, regardless of their legal prowess or reading ability, the capacity to understand just what data is going to be collected and used.

The Sage Biometrics developers and research community have also deliberately decided not to collect data that has no direct use in the study. For example, while the app tracks how much walking you’ve done in a day, it has been specifically developed not to track where you are walking to, in order to protect your privacy and not provide data to researchers that they have no ethical use for.

A recent Perpetual survey of NFP Directors found the majority of NFP directors feel the clever use of digital data is critical to advancing their mission. However, only one in three felt their organisation’s technology and policies around the safe and effective use of digital data reflected their mission and values.

It’s in this space that philanthropic funders and donors must be willing support the investment required by non-profits with their requirements in the infrastructure, culture and governance capabilities, to thrive in a digital age. For those funders who want to see more outcomes data, this is particularly important. When pushing organisations to collect data as a means of demonstrating impact, funders have an inherent responsibility to ensure those organisations can do so in a way that is ethical and safe.

There’s nothing particularly sexy about philanthropic investments in building this digital capability but it is exactly this kind of investment that will ensure our community sector and the organisations within it remain a vital part of our civil society.

By Caitriona Fay, National Manager Philanthropy & Non-Profit Services, Community & Social Investments at Perpetual

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