Donating digital me
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Presented at DIGITAL HUMANITIES AUSTRALASIA 2016: Working with Complexity, Hobart, Tasmania. At some point in the future I am going to die. When this happens, I can donate my body to science but I’m currently unable to donate my data or even my metadata to research. I will present a scenario where an end of life service exists for people to donate their data.
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Donating digital me
- 1. Donating digital me What can be learned from my digital footprint? Katie Hannan, #DHA2016 1415 HRS, 2016-06-22 -42.901552, 147.327449
- 3. What is my data? It’s the “raw stuff, [it is] what is collected by instrumentation or machinery”. Pomerantz (2015, p.20)
- 4. Data collection aims understand the public’s relationship with the concept of digital legacy identify attitudes towards personal data donation determine necessity for an end of life data donation service inform understanding of personal data ownership
- 5. Personal metadata "metadata is a statement about a potentially informative object" Pomerantz (2015)
- 6. Personal metadata Word trends (Voyant Tools) Word Links (Voyant Tools)
- 7. Personal information is information or an opinion about an identified individual, or an individual who is reasonably identifiable. Office of the Australian Information Commissioner, 2016.
- 8. End of Life Personal Metadata Store Service Inclusions Create a data will Including nomination of data executor Personal data audit List locations and access methods Prepare EOL triggered freedom of information requests where necessary Data harvest De-identification of data
- 11. Results about metadata preservation 68.8% likely 16.9 % unlkely
- 12. Results about metadata preservation 74.67% likely 12 % unlkely
- 13. Personal metadata custodians Are these organisations ready?
- 15. Test cases What do I buy? Woolworths everyday rewards Flybuys Credit card statements….. What does what I read say about me? Where could this information be? Public Library Book depository Overdrive
- 16. Links Paper - it’s a work in progress! Research data - dx.doi.org/10.4226/66/576735696e4b0 References
- 17. Questions? Contact me mail@katiehannan.com | twitter @katykat
Editor's Notes
- At some point in the future I am going to die. If there is nothing in life that I am 100 % certain about, it is this. I can’t tell you when, or why, or even how? What will happen to me? I can donate my body to science but I’m currently unable to donate my data or even my metadata to research. For a long time I’ve been almost afraid of death, afraid of becoming invisible, being forgotten. I’d even thought about how much it would cost to be cryogenically frozen then thawed out when there was a way that I could be cured, or fixed. Perhaps I could become a cyborg? More recently I’ve been thinking about what will happen to digital footprint. What will happen to my data?
- What exactly is ‘my data’? Pomerantz (2015) says that data is the “raw stuff, [it is] what is collected by instrumentation or machinery”. Therefore, my data is all the digital files that I’ve created or that my computer, garmin, suunto watch, iphone, ipad, or digital camera has created. Some of this may be classified as information or knowledge and much of this may have no meaning to anyone, not even me. If we broaden the concept of “my data” then there’s also my personal metadata, but what exactly is this?
- In order to begin to answer some of my questions, I conducted a short survey that ran over the course of a week (6-13 June 2016) and received 99 responses - c’mon 100th participant, where were you!? Participants were recruited via social media and email (personal contacts and the Data Librarians Google+ group[1]). My aim was to: understand the relationship that members of the public have with the concept of digital legacy identify respondents attitudes towards donating their personal data determine the necessity for an end of life data donation service and inform understanding of personal data ownership [1] Data Librarians Google+ group https://plus.google.com/u/0/communities/105455769899183786145
- The first question asked respondents to take into consideration this definition of metadata and explain what their understanding of the concept of personal metadata was.
- Response analysis Rather than read through all the responses myself (and due to time constraints) I decided to let the computer do the analysis for me. I crowd sourced a tool to use (thanks twitter) and ended up selecting Voyant Tools. I removed words included in the question (personal and metadata) to get a better understanding of the terms that respondents selected.
- Social services that respondents said they used
- If you could choose which aspects of this information you wanted to keep and make it available to your descendents how likely would you be to do so? Likely ranges from somewhat likely to extremely likely Unlikely ranges from somewhat unlikely to extremely unlikely
- If you could collect this information (your personal metadata), make it anonymous and store it somewhere with minimal effort on your part, giving researchers the ability understand more about how people live in this modern digital age, how likely would you be to do so? Likely ranges from somewhat likely to extremely likely Unlikely ranges from somewhat unlikely to extremely unlikely More questions - how likely, are the people who are interested in donating their bodies to science for research, to donate their personal metadata to research? Seeing as I’m interested in being able to connect data, I asked the University of Adelaide a few questions about their Body Donation Program and this is what I found out. When you sign a consent form it is a “total and unconditional donation”. They do not give updates on how each body is used, but what if my body informed research? Is there a way for my estate to find this out? Could my physical remains be considered as research output and be listed with my universities institutional repository…. Is it not traditional research output? What if the nature of my death was such that it required an autopsy? What if several people died from similar causes and autopsy results showed a pattern? What if we could mine personal metadata to discover links between similarities in how these people’s lives were conducted? What if they all shopped at a particular shop at a certain point in time and bought a particular product? How far can you take this information journey?
- Personal information may be de-identified so that the information is no longer about an identifiable individual or an individual who is reasonably identifiable (s 6(1)). Data that has been successfully de-identified is not personal information. De-identifying personal information for the purposes of big data activities means the information may be used, shared and published without jeopardising personal privacy. This enables organisations to maximise the utility and value of the information while safeguarding privacy. De-identifying information also lessens the risk that personal information will be compromised should a data breach occur. There are a number of points during a big data activity when de-identification may occur.For example, de-identification may occur when the personal information is collected, prior to it being used for big data analytics, or before the analytical outcomes are presented.
- Freedom of Information What if the data is based overseas? What laws apply then? The law of the country that the data is located or the law for the country where the person lives who the data is concerning. Important questions to ask in an online environment are, first, is it practicable to prescribe the specific length of time during which personal information may be retained by a collecting agency? And secondly, what is the most appropriate way to enforce legal limits on information retention? Modern technology facilitates and encourages the retention of customer information collected by e-commerce businesses for an indefinite period, rather than for the limited albeit loosely defined periods currently prescribed by many privacy laws. A related important question is how to best impose and enforce a right of deletion. (Corbett, 2013) Should the exercise of the right to delete (also known as the “right to be forgotten”, “the right to erasure” and the “right to oblivion”) be controlled by the individual to whom the personal information pertains? Alternatively should the law mandate the use of automatic deletion and destruction technologies by the collecting agency after an appropriate time? (Corbett, 2013)
- I'm interested in obtaining all of the information associated with my Woolworths Rewards card. Is this possible? Do you keep information about where I have shopped, what I have bought, where I have used the card for cheaper petrol? Response Thank you for contacting Woolworths Rewards regarding your account query. You are able to retrieve all information regarding your account online, at www.woolworthsrewards.com.au. You will be able to view your transaction history dating back up to 30 days. If you need us to send you a transaction statement, do let us know. Thank you for your patience and for taking the time to contact us. Please feel free to contact us Katie, should you have any further questions. You can go to the “contact us” link through our website using either the email or our live chat option; or by calling us on 1300 10 1234. We’re open 8am until 8pm Monday-Friday and 9am-5pm Saturday-Sunday. Your privacy is important to us. Please view our Privacy Policy for more information. Logged into my online account and saw that I could actually access data that was up to 90 days old. The Woolworths Group Privacy Policy (2016) states that they collect and hold the following kinds of personal information: · Your personal details such as your name, addresses, telephone numbers, age and gender; · Your customer reference number or loyalty card number; · Whether you have taken up some of our other offerings, such as membership of our clubs and loyalty programs, our financial services products and our mobile applications; · Any rewards and redemption details applicable to your membership of our loyalty programs; and · Whether you have a connection with others whose personal information we may collect or hold, for example family members who may be linked to your loyalty program membership; · What, how and when you buy from us or have expressed an interest in buying from us; · Your stated or likely preferences, for example whether you may be interested in particular products or promotions.