Liz Lyon, UKOLN Director, recently gave a talk on “The Informatics Transform: Re-engineering Libraries for the Data Decade” at the VALA 2012 conference held in Melbourne, Australia.
The abstract for the talk describes how:
This talk will present a case for a new and transformative library paradigm which delivers innovative informatics services to support data-intensive research. It will draw on cutting-edge exemplars from open data initiatives, public participation and citizen science, socio-ethical challenges with personal data, policy drivers, emergent scholarly communications and research impact metrics /tools, all of which are radically changing the research landscape. The presentation will explore how libraries can respond to these challenges with novel informatics services, new data support roles and pioneering strategic partnerships.
I was particularly interested in the “socio-ethical challenges with personal data” address in the talk. In the talk (and note that a recording of the talk is available) Liz described how a genome kit can be purchased for $99 (or, I discovered, from £59 in the UK).
Discover your deep ancestral roots using genetic genealogy. Find out where your ancestors came from, discover their ethnic background, and trace the roots of your surname.
If you order the test:
Your collection kit will have everything that you need to collect a DNA sample from inside your mouth. It’s fast, painless and simple and very similar to brushing your teeth. The entire process takes just seconds to complete.
Does that seem appealing or does it fill you with horror? Do you really want to discover such information which would never have been previously available? And although your personal information may be confidential, will anonymised findings be aggregated to reveal patterns of Viking ancestry around the UK?
In her talk Liz remarked on the privacy implications of such technical developments. Liz went on to report on a Nature survey which, as illustrated below, showed that “Nature readers flirt with personal genomics“. As described in the article:
“Nature readers are eager to adopt these new technologies. About 18% report having had their genomes analysed in some way, ranging from whole-genome sequencing (about 10 respondents, after correcting for reporting errors) to direct-to-consumer tests. Of the remainder, 66% say they would have their genome sequenced or analysed if the opportunity arose.“
I do wonder whether we are starting to see significantly changing attitudes developing towards privacy issues as technology drives developments not only for genome analyses but also, and more relevant to this blog, revelation of private information whether directly or, through aggregation of data, indirectly?
It seems to me that the forthcoming ‘cookie’ legislation will help to gain an understanding of the general public’s concerns over privacy issues. Those who developed the EU cookie directives felt it was important to ensure that users of web sites are made aware of personal information which is stored in cookies. But cookies have been with us since 1994. What if the cookie legislation, and the requirement for users to opt-in to cookies, results in a backlash, with people wishing to go back to the simplicity of today’s environment in which cookies are invisible to most people. It will be interesting to see how users will respond. And I should add that I’m saying this as someone who has a Facebook account and who, several years ago, installed the a Firefox plugin which enables me to block cookies – but has never done so. Indeed using the plugin for the first time in ages I notice that there are currently 18 cookies set. Am I bothered? The answer is no. Should I be? You tell me. Do you block cookies?