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Would you donate your data?

This afternoon, I will allow a stranger to stick a needle in me and extract blood from my body. This is something I do on a regular basis.

Even though I understand how valuable my blood might be to someone who desparately needs it, it still took me a while to become a blood donor.

The reasons to give blood are clearly so well understood that there is nowhere on the website to explain why it is important. Their biggest challange (judging by their home page) is to get people to make that appointment to actually part with a pint of the red stuff. There are few cultural barriers to deter people, and we all kind of know that one day it might be us in need of a life-saving blood transfusion.

It was timely, then, that I came across a few blog posts – via Jeff Jarvis: very public health – that look at other ways we might contribute to the health service (local/global?) by donating our data – by being willing to talk about our health issues.

  • Jeff Jarvis looks at some the reasons we prefer to not talk about our health issues, and suggests that sharing our health data could help with medical research. He’s clear that this has to be an opt-in issue – people shouldn’t be forced to share this kind of information – but, he suggests, we are less likely to do so today because of culture, and fear of stigma.
  • Xeni Jardin blogs (and tweets) about her first mammogram and discovering she has breast cancer. By sharing in this way, she hopes to take some of the fear-of-the-unknown out of the process, and encourage other women to book a screening.
  • Michael Driscoll compares data donation with organ donation, with the distinction that unlike your organs, you can donate your data away and yet still keep it.

I’d be interested to hear from others about the kind of information they feel happy / not happy to share online.

There are many cultural factors – from where we live, to when we were born - that affect how we feel about what we share publicly. People in Germany probably feel differently about this issue to people in Guyana, or Gambia, or Georgia. But I also wonder how the internet – which seldom respects national borders – might be shaping cultural attitudes to what we share online (thanks, Mark).

On my reading list – Public Parts: how sharing in the digital age improves the way we work and live. (Jeff Jarvis)

Andy Moore

I work as Head of Global Communications for the International Fellowship of Evangelical Students (IFES), having previously worked with Compudava (now Endava) in Moldova, building web applications, and for Wesley Management, working with small businesses and charities. I have a passion to see intelligent application of digital technology to serve the Church and mission. Married to the lovely Ruth.

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