AppId is over the quota
AppId is over the quota
Let public have greater say over big health data - opinion - 03 February 2015 - New Scientist@import "/css/gridmain.css"; @import "/css/article.css";@import "/css/comlist.css";@import "/data/images/ns/haas/haas.css";/* specific to this article view */#maincol {border-top:solid #A7A7A7 1px; padding-top:15px;}/* Basic commenting CSS*/.combx {margin:10px 0 0 0;padding:10px 20px 10px 10px;}#compnl {border-top:solid #A7A7A7 1px;}/* comment styles for article page only *//* form styles */#comform {margin:20px 50px 20px 10px;}#comform label{width: 90px;text-align: right;}#comform div.userhelp {margin:0 0 2px 115px;}#comform input.textinput, #comform textarea {width:300px;}#comform div.floatclear, #comformlogin div.floatclear {margin-bottom:10px;}#comform input#comcancel{margin:0 10px 0 0;}#comform input#compreview{margin:0 10px 0 0;}#comform textarea {height:95px;}#comformlogin {margin:20px 100px 20px 100px;}#comformlogin label{width: 120px;}#comformlogin input.textinput {width:150px;}#snv_opinion a {background: url('/img/bg/snv_opinion.jpg') no-repeat; color:#fff;}/* article social media */#sharebtns {width:440px; margin-left:10px; margin-bottom:20px; padding:15px 10px 15px 10px; background:#F2F2F2;}#sharebtns div.floatleft {margin-right:10px;}#sharebtns .stumble {margin-top:1px;}.grpTools img {margin-right:8px; margin-top:9px;}#fblike {margin-top:41px;}
Opinion Log inEmailPassword Remember meYour login is case sensitive
I have forgotten my password
Register nowActivate my subscriptionInstitutional loginAthens logincloseMy New ScientistHomeNewsIn-Depth ArticlesOpinionCultureLabGalleriesTopic GuidesLast WordSubscribeDatingLook for Science JobsSPACETECHENVIRONMENTHEALTHLIFEPHYSICS&MATHSCIENCE IN SOCIETYCookies & PrivacyHome|Opinion|Health|Tech|News
Let public have greater say over big health data13:30 03 February 2015 byMartin RichardsFor similar stories, visit theComment and AnalysisTopic GuideWe risk harming the huge potential of mass medical data in health research unless public concerns are properly addressed
Digital data are being amassed at an astonishing rate. This vast store presents great opportunities for science. Health data – for example, from biomarkers, medical imaging and genome analysis – offer a rich resource. Combined with data about lifestyle, diet and living and working environments, they can yield new insights on the causes of disease and the effectiveness of treatments, help to predict and prevent illness and allow therapies to be personalised. Recent advances in information technology and data science – such as faster computing and improved methods of analysis – make this increasingly possible and are already being used in projects that rely on volunteers, such as the UK Biobank, which hopes to track the lifestyle and health of 500,000 over-45s. So why has the UK government's giant care.data scheme, which aims to aid research and improve the health service by centralising data on millions of people in England obtained from family doctors, met with such resistance? When security and privacy doubts were voiced over care.data last year, the project was postponed. It is an active opt-out scheme; unless an individual objects, their details are included. But the reaction of GPs, the media and civil society demonstrated that the data uses intended in the scheme were not in line with people's expectations. Data worries People have concerns about data misuse – such as worries over insurance pricing, marketing, political surveillance and identity theft – but we do not yet have a clear understanding of the impact of such misuse. Research commissioned as part of the Nuffield Council on Bioethics's new report on the use of big data in health care and biomedical research, led by the Wellcome Trust's Expert Advisory Group on Data Access, shows that the harms are likely to be broad in range and more prevalent than those that are acknowledged by regulatory regimes. We know that a particular public concern is the sharing of health data with commercial researchers: for example, pharmaceutical or insurance companies. Re-identification from "anonymised" data is increasingly possible as technology improves and more and more databases become linked. People are being asked to consent to data uses that have implications which neither they nor the researchers may fully understand. And simply complying with data law is not enough: it is just a framework that may not fully capture the reasonable expectations of research participants about how their data will be used. To win public confidence, we need to go further. We need to start by understanding people's interests in how their data will be used. Appropriate security measures and participant consent need to be framed within governance systems that both involve and are accountable to those whose data is held. Such systems must take seriously people's reasonable expectations about data use: about who may have access to the data, for what purposes and for how long. This may seem onerous, but there are examples of good practice to draw from as well as sobering lessons from previous cases. These recommendations are in the latest report from the Nuffield Council on Bioethics. It offers a set of principles and some practical guidance to help those contemplating data initiatives such as care.data. Other conclusions include tracking how health data are used and ensuring individuals are told of any privacy breaches. Tough penalties for deliberate misuse of data, including imprisonment, should be introduced, even if it appears that no harm was caused. Only in this way will we build the public involvement and trust that is necessary to ensure that the benefits of personal health data are not squandered.Martin Richards is chair of the Nuffield Council on Bioethics Working Party for the report The Collection, Linking and Use of Data in Biomedical Research and Health Care: Ethical Issues. He is also emeritus professor of family research at the University of Cambridge
If you would like to reuse any content from New Scientist, either in print or online, please contact the syndication department first for permission. New Scientist does not own rights to photos, but there are a variety of licensing options available for use of articles and graphics we own the copyright to. 
Concerns are growing over the misuse of health data (Image: Imagesource/Getty)ADVERTISEMENTMoreLatest newsCrossing the germ line – facing genetics' great taboo
13:38 06 February 2015Let's stop drawing lines in the sand when it comes to genetically modifying people and talk about engineering everybody, says Michael Le Page
Living with the algorithms that run our lives
08:00 05 February 2015Most of us don't understand the software that hones internet searches and our newsfeeds, but we don't need to in order to come to terms with them
Don't rage against parents for Disney measles outbreak17:00 04 February 2015Amid the worst US measles outbreak in years, a tide of rage against parents who fail to vaccinate children is likely to harden attitudes, warns Phil Plait
The maths drive is like the sex drive
20:00 03 February 2015What urges mathematicians to spend years in pursuit of solutions? Manya Raman Sundstr?m thinks it's because we can't help seeking beauty
see all related stories
MoreLatest newsPluto's evaporating ice leaves it with a blank face18:00 06 February 2015Astronomers hoped Pluto's craters would hold a record of impacts from its neighbours, which are too small to see – a new study dashes those hopes
The secret of the world's largest seed revealed
17:32 06 February 2015Charismatic coco de mer palm trees of Seychelles seem to be unique among plants in caring for their seedlings with a novel use of leaves
Today on New Scientist17:30 06 February 2015All the latest on newscientist.com: the secret life of your home, breaking the great genetic taboo, ferocious lemming, first stars get younger and more
Both cause and cure for diabetes could be in your gut16:16 06 February 2015Changes in children's gut microbes could signal the onset of type-1 diabetes, but engineered probiotic bacteria could help treat the disease
see all latest news
Most read The island paradise overrun by giant cannibals
Lilac and turquoise are as basic as red and orange Great Barrier Reef set for surprise electoral win Meet – and hear – the world's first bilingual chimps Mushroom kills with cookie cutter trick Most read FOLLOW USGet editors' picks in your social streamsThis week's issueSubscribe
For exclusive news and expert analysis, subscribe to New Scientist.
Gain full online accessCurrent issue contentContent of past issues07 February 2015ADVERTISEMENTBack to topLoginEmailPassword Remember meYour login is case sensitive
I have forgotten my password
Register nowActivate my subscriptionInstitutional loginAthens logincloseAbout usNew ScientistSyndicationRecruitment AdvertisingStaff at New ScientistAdvertiseRBI JobsUser HelpContact UsFAQ / HelpDisclaimerTs & CsCookiesPrivacy PolicySubscriptionsSubscribeRenewGift subscriptionStudent SubscriptionMy accountBack issuesThe CollectionThe Anti-ZooLinksSite MapBrowse all articlesMagazine archiveNewScientistJobsThe Last WordRSS FeedsOnline StoreiOS & Android appsLow-bandwidth siteScience JobsSearch all JobsBiology JobsChemistry JobsClinical JobsEarth & Environment JobsEngineering JobsMaths & IT JobsCareers Advice? Copyright Reed Business Information Ltd.View the original article here
0 comments
Post a Comment