Pagliari, Claudia

English

Blog piece analysing the stealth acquisition of citizens' personal genetic real estate by companies and governments. Considers the ethical tensions arising between the desire to progress innovations in personalised medicine and the need to recognise the societal risks and implications and respect privacy and consent. Highlights the importance of transparency and public engagement in moving forward

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     Edinburgh Research Explorer                                      Privacy, data science and personalised medicine. Time for abalanced discussionCitation for published version:Pagliari, C 2015, Privacy, data science and personalised medicine. Time for a balanced discussion.LinkedIn Publishing. <https://www.linkedin.com/pulse/privacy-data-science-personalised-medicine-time-claudia-pagliari>Link:Link to publication record in Edinburgh Research ExplorerGeneral rightsCopyright for the publications made accessible via the Edinburgh Research Explorer is retained by the author(s)and / or other copyright owners and it is a condition of accessing these publications that users recognise andabide by the legal requirements associated with these rights.Take down policyThe University of Edinburgh has made every reasonable effort to ensure that Edinburgh Research Explorercontent complies with UK legislation. If you believe that the public display of this file breaches copyright pleasecontact openaccess@ed.ac.uk providing details, and we will remove access to the work immediately andinvestigate your claim.Download date: 17. Aug. 2021Image taken from the BBC news appPrivacy, data science and personalisedmedicine. Time for a balanced discussionPublished on March 26, 2015There are several fundamental truths that those of us working at the intersection of datascience, ethics and medical research have recognised for some time. Firstly that'anonymised’ and ‘pseudonymised' data can potentially be re-identified through theconvergence of related variables, coupled with clever inference methods (although thisis by no means easy). Secondly that genetic data is not just about individuals but alsoabout families and generations, past and future. Thirdly, as we enter an increasinglydigitized society where transactional, personal and behavioural data from public bodies,businesses, social media, mobile devices and IoT are potentially linkable, the capacityof data to tell meaningful stories about us is becoming constrained only by the questionswe ask and the tools we are able to deploy to get the answers. Some would say thatprivacy is an outdated concept, and control and transparency are the new by-words.Others either disagree or are increasingly confused and disenfranchised.Some of the quotes from the top brass of Iceland’s DeCODE Genetics, appearing intoday’s BBC’s News, neatly illustrate why we need to remain vigilant to the ethicaldilemmas presented by the use of data sciences for personalised medicine. For those ofyou who are not aware, this company has been at the centre of innovation in populationgenomics since its inception in the 1990s and overcame a state outcry over privacy andconsent, which led to its temporary bankruptcy, before rising phoenix-like from theashes. The fact that its work has been able to continue in an era of increasing privacylegislation and regulation shows just how far the promise of personalized medicine hasskewed the policy narrative and the business agenda in recent years. What is great aboutIceland, in terms of medical research, is that it is a relatively small country that has beensubjected to historically low levels of immigration and has a unique family namingEdit articleClaudia PagliariProgramme Director, MSc in Global eHealth at The Uni…16 4 0system and good national record keeping, which means that the pedigree of most of itscitizens is easy to trace. This makes it an ideal Petri dish for genetic researchers. Andhere’s where the rub is. In short, by fully genotyping only 10,000 people from this smallcountry, with its relatively stable gene pool, and integrating this with data on theirfamily trees - and doubtless a whole heap of questionnaires and medical records - thecompany has, with the consent of a few, effectively seized the data of the "entirepopulation". The reference to "these tricks" by the CEO in this interview pretty muchsums it up and gives rise to a feeling of deep unease on the part of this reader. Ofcourse, one can't rule out some mischief making by the BBC in including these quotes -the robustness of the science is demonstrated by its publication in the prestigious NatureGenetics and its potential value for personalised and preventive medicine cannot bedisputed. This is important stuff for global health, and one only has to look at the mediafrenzy over President Obama’s precision medicine initiative to see how much optimismthe topic is generating. However such progress demands a hand-in-glove relationshipwith citizens and utter transparency of purpose. Dropping the societal and privacyimplications into the narrative only after the work has taken place is disingenuous inthe extreme. We must be careful not to make the same mistakes ourselves and we aredoing our best to engage the public in shaping the governance of the UK’s nationalmedical and administrative data research enterprises, constantly balancing the need forscience against the need for public trustworthiness and assent, mindful of the challengesinvolved. www.adrn.ac.uk; www.farrinstitute.orgMy red flags were raised closer to home this month at a promotional event for a Scottishproject which is seeking to pre-consent members of the public into data sharing formedical research. Some of this is fairly non-contentious; it makes sense to skip a time-consuming research stage by having a representative population of medical records toaccess when seeking eligible patients for new studies, and engaging people as partnersin research must be a good thing. However a request for people's "spare blood" hasunexpectedly worked its way into the recruitment drive, with a somewhat ambiguousmessage implying that blood is merely a waste product and emphasizing that no effort isrequired to donate it apart from a signature. In fact the researchers are planning tohoover up some of our most valuable data assets in the form of our genes and then reusethem for as-yet unspecified research. Concern has been noted and should hopefully leadto a more balanced set of messages. http://www.registerforshare.org/index.phpThis sort of thing is going on worldwide, often in countries where informationgovernance policies and penalties for data misuse are weak or non-existent, while thelines between identifiable vs. non-identifiable, and public vs. commercial interest arecontinually blurring. Becoming attuned to public sensitivities and engaging citizens andpatients is vital for keeping a clean house and preventing potential Snowdenesquetrouble later on.It is not insignificant that DeCODE Genetics now belongs to a Chinese company.http://en.wikipedia.org/wiki/DeCODE_genetics I shall leave it to others to dissect thepower implications of this, and will not pre-judge the views of the Icelandic population,whose social contract with the researchers is not clear. Perhaps others will enlighten me.Either way it’s worth an open debate.Help Center About Careers Advertising Talent Solutions Sales Solutions Small Business Mobile Upgrade Your AccountLinkedIn Corporation © 2017 User Agreement Privacy Policy Ad Choices Community Guidelines Cookie Policy Copyright Policy Send FeedbackFun and Fallacy in Consumer GeneticsMarketingClaudia Pagliari on LinkedInPoliticians and the Privacy-TransparencyParadoxClaudia Pagliari on LinkedInTechnology, politics and power - Russiaplans new mobile OSClaudia Pagliari on LinkedInLooking for more of the latest headlines on LinkedIn?BBC News. DNA of 'an entire nation' assessed. By James Gallagher, Health editor,March 26th 2015 http://www.bbc.co.uk/news/health-32024158Tagged in: genetics, citizen engagement, big dataDon't miss more articles by Claudia PagliariClaudia PagliariProgramme Director, MSc in Global eHealth at The University of Edinburgh9 articlesLeave your thoughts here…Morna AtkinsonM.D. of EEERight comment but wrong subject - please ignore2yLike ReplyMorna AtkinsonM.D. of EEENot convinced http://mobihealthnews.com/41800/review-most-studied-text-message-health-interventions-were-ef-fective/Do the elderly use smart phones? More likely to be simple ones with big buttons, if they have them atall.2yLike ReplyThere are 2 other comments. Show more.Discover more storiesLanguageNewest4 comments

Privacy, data science and personalised medicine. Time for a balanced discussion

https://www.research.ed.ac.uk/files/32932135/Privacy_data_science_and_personalised_medicine._Time_for_a_balanced_discussion_Claudia_Pagliari_.pdf

Privacy, data science and personalised medicine. Time for a balanced discussion

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