My Digital FootPrint

https://i-consentproject.eu/results/ D1.1 Report on guidelines, standards and initiatives for improving informed consent in the healthcare context. D1.2 Report on gender and age-related issues associated with the acquisition of informed consent. D1.3 Ethical and legal review of the informed consent. D1.4 Ethical issues concerning informed consent in translational/clinical research and vaccination. D1.5 Legal issues concerning informed consent in translational/clinical research and vaccination. D1.6 Patient involvement in vaccine research. D1.7 Socio-cultural, psychological and behavioural perspectives towards informed consent process.

#facebook published “ Charting a Way Forward on Privacy and Data Portability ” on 4/10/19 however it is *not* a white paper but a document seeking free guidance and input. In their own words “To address these challenges, we’re seeking feedback and guidance from a wide range of stakeholders about how to build portability in a way that empowers people and fosters competition while maintaining their trust in online services” I have, like many others, given a lot of input over the years to Facebook for free via invites to brainstorms, private sessions and roundtables. In all cases massive promises are made by #Facebook about what next but they never deliver. No papers, no summary, no write up, no thanks – nothing. I set out my thinking on the #facebook data portability paper at the end as interest to those who might also read the paper. I have been exploring the topic of data portability for some time. This piece explores the strategic opinions for market models and the regulators stanc

  With 27 countries in the European Union there are, unsurprisingly, 27 different interpretations of Europe's new e-privacy rules. The layer of complication is added as the e-privacy law has been issued as a directive, a form of legislation that lets every E.U. country fashion its own domestic law, as long as they honour the spirit of the directive.  The result is that Europe's internet privacy regulations are a quagmire, aggravated by the E.U. taking a hard line with cookies by requiring opt-in consent for every website, making it difficult to put the new rules into practice. The E.U. directive on online privacy was supposed to become law in each country by May 2011, but in March 2012 that's only happened in 11 of the 27 countries. Some of the biggest, like Germany, Spain, and Italy, are still missing. (Luxembourg, however, is in!) The U.K. and France have taken a pragmatic approach, interpreting consent if consumers don't opt out, even if that isn't exactly what

Another European Union privacy group has published a document with recommendations about location privacy the problem is that it will inform those who are influential in the EU but not really understanding the wider implications and unintended consequences. The paper is published by "Article 29 Data Protection Working Party", which is part of the justice division of the EU, and is formed by a representative in charge of data protection (privacy) in each EU member state. When the Article 29 group puts out an opinion, its recommendations can be followed by either individual EU states or the EU itself and they did set limits on how long search engines should be retaining their search data.  The recommendations aren’t law but they do appear to go far above and beyond what's been discussed so far in the U.S. just as Google,  Apple, Sony and Nintendo are being interrogated about their policies when it comes to user data its use and ownership. The key recommendations are:

source : https://www.nbcnews.com/tech/internet/facial-recognition-s-dirty-little-secret-millions-online-photos-scraped-n981921?cid=par-aff-nbc-knbc_20190312 “Facial recognition's 'dirty little secret': Millions of online photos scraped without consent.”  so is the headline on this # NBC story.   Classic headline for click bate.  IBM released 1 million pictures of faces, intended to help develop fairer face recognition algorithms. This is not a new issue and the bias features in a few very good TED talks so is very real.  However the story was that you  face was scraped directly from #Flickr.  Now the question is all about permission of the subjects rather than this is something we need data for to remove bias.  Data researchers scrape data from the internet (it is public) all the time to train algorithms. Photos are often a fantastic source of image data as the hashtags conveniently correspond to the content of the photos, making it extra easy to generate lab

How many people do you need before identity has value - two! How come, as an industry where 3.2bn ( McKinsey ) people have a digital identity, are we so fragmented, uncoordinated and disagreeable?  It is evident that our ongoing discussions about identity, ethics, bias, privacy and consent revolve around a lot of noise (opinions) but little signal (alignment), but why?  Recognising that in 30 years of digital identity, we still lack coherent and coordinated action to make it work for everyone is a reality. Perhaps it is time to recognise that it is “us”, the industry, who are the problem.  We continue in our self confirming opinions, righteous products and determination to win at all costs.  I am not saying we have not made progress or done amazing things, but we have not done as well as we should have! As identity now takes several forms insomuch that it emerges from interactions with a system (say payment & reputation), is foundational (given by an authority, a credential), and

{portability, sharing, mobility} this is used to provide the widest possible coverage of models and thinking. Portability that the data can move, sharing data as the ability to have access but does not need to move, and mobility as in the data is decentralized ------- Any discussion about personal data leads to opinions being shared about what it means (to someone) based on the position you start from; a personal view is different from a groups view, which is different from a citizens view and different again from an enterprise views. Inevitably there is a heated exchange as one of the parties believes in the purity of their view(point) and model to create a utopia and panacea for everyone. Once we grasp that there are massive gaps, voids and value in any of the starting positions; adding the complexity of assumptions, experiences and data itself, we can look at the different approaches and debate the wide range of solutions. The purpose of this post is to provide a framework

I am just unaware of how consent has become either of these two options?   Which director at either of these businesses has (any) viability of what their companies have done.  I have explored here why optin/ optout needs to come back to the board and these both show great reasons why? How is liking something informed consent ? @sportaustralia How is no option - apart from agree - consent ? @ITV and when I follow the links what do I get - a right old mess.  Change the settings that then gets ignored when I come back to agree, I get the default everything and far far more than you get a better experience - surveillance and tracking goodies. If this not mis-leading I have no idea what qualifies for mis-leading. 

This thought piece explores how business executives ought to be debating control over user (data), is less about where data is collected and stored but rather where, or rather how, individual data is used, monetised and by whom. -- Given that platform companies such as Apple, Facebook, Twitter, Google, Baidu, Amazon, Alibaba, Tencent Xiaomi as examples complicate, confuse and officiate what they are actually doing with our personal data, how can leaders position their business to become truly customer centric and put the customer first. As a context, economics defines utility companies (gas, electricity, water, telecoms) as only having one true differentiator - price. Given the ubiquity and certainty of one unit of electricity is the same from where-every you buy it, the market players create bundles and offers to hide the actual price and to make comparisons between the same utility very difficult or near impossible. However, what happens when you don't have a “price” e.g. Fac

I have been invited to a seminar on “The Importance of ESG Post-Covid” ESG being environment (environmental), social (society) and governance. Surely the organiser, a leading network for independent non-executive directors, had considered what being forced into consent means. How can anyone speak to governance when the basics of their own process is flawed? The question, “when did forced consent become good governance?”

I saw 50 black swans when thinking how data data portability/ mobility will migrate value towards the individual. Now some headlines are set up for click bait; however here is my picture taken in on the North Island New Zealand on lake Rotomahana when out walking and preparing this. Yes each little do it a black swan. Summary : Been thinking about the complex and hidden implications of the personal data portability/ mobility models and data sharing economics. The thinking leads to the possibility of making it far harder for large silo data owners to sell/ share their data due to risk of re-identification; which changes the data economy. Less general silo data being available for sale but increasing demand for ‘quality’ data could mean individual collated data becomes far more valued far quicker than forecast, as the value chain shifts in response to new legislation/ regulation. Early and fast adopting countries will benefit with significant increases in innovation, investment and