Personalised healthcare short guide (for web)
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Medical profiling and online medicine:
The ethics of ‘personalised healthcare’ in a consumer age
A guide to the report
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Table of contents
Introduction 01
Whatis‘personalisedhealthcare’? 02
Ethics 03
Intervention 04
Casestudies Onlinehealthinformation 05 Onlinepersonalhealthrecords 06 Buyingmedicinesonline 08 Telemedicine 09 Personalgeneticprofiling 10 Bodyimaging 11
Conclusions 12
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01
IntroductionThisguidesummarisestheconclusionsandrecommendationsthatarediscussedinmoredetailintheNuffieldCouncilonBioethics’reportMedical profiling and online medicine: The ethics of ‘personalised healthcare’ in a consumer age(publishedOctober2010).
NUFFIELDCOUNCILONBIOETHICS
Newdevelopmentsinmedicalprofilingandonlinemedicinearepromisedbytheirprovidersasleadingtoaneweraof‘personalisedhealthcare’.Thesedevelopmentsinclude:
•direct-to-consumerbodyimaging(e.g.CTandMRIscans)andpersonalgeneticprofilingasahealthcheck
•theincreaseinwebsitesthatprovidehealthadvice,diagnosis,storageofhealthrecords,andmedicinesforsale.
Thetechnologiesbehindthesedevelopmentsarealreadybeingusedinpositiveways.Forexample,theUK’sNationalHealthService(NHS)usesapprovedgeneticteststodetectraregeneticdisorders.Weexplorethemorecontroversialusesofthesetechnologies,andtheextenttowhichtheyreallydoleadtohealthcarebecomingmorepersonalised.
Notesinsquarebracketsrefertothechaptersinthereport.
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02 NUFFIELDCOUNCILONBIOETHICS02 NUFFIELDCOUNCILONBIOETHICS
What is ‘personalised healthcare’?Theterm‘personalisation’hasbecomeverywidespread,withmanycompanies,policymakersanddoctorsclaimingthatthisisthefutureofhealthcare.
Wefoundseveralmeaningsfor‘personalisedhealthcare’.Forexample,itcanmeanhealthcarethatistailoredtoaperson’sspecificcharacteristics,orhealthcarewheremoreresponsibilityisgiventoindividualsratherthanmedicalprofessionals[Chapter1].
LinkswithresponsibilisationandconsumerisationSomeofthesetypesofpersonalisedhealthcarecorrespondwithtwokeysocialpressures,called‘responsibilisation’and‘consumerisation’.Thesepressuresarenotjustrelevanttohealthcare,butpresentparticularethicalchallengesforthedevelopmentsbeingconsideredinthisreport.
‘Responsibilisation’
PolicymakersintheUKandelsewhereoftenencouragepeopletotakemoreresponsibilityfortheirownhealth–toleadahealthylifestyleandplayanactiveroleinmanagingtheirhealthcare.Developmentsinmedicalprofilingandonlinemedicinecanprovidenewtoolstoenablepeopletotakemoreresponsibilityfortheirhealth.
‘Consumerisation’
Thereisnothingnewaboutbeingabletoselectandpayforhealthcareintheprivatesector,buttodayevenpublichealthcareservicesareaimingtobecomemoreuserfocused.Aconsumeristapproachtohealthcareandthenewtechnologiesavailablehavebeenseizeduponbyfirmsofferingmedicalprofilingandonlinemedicineservices[Chapter2].
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0303NUFFIELDCOUNCILONBIOETHICS
Ethics Thefollowingfiveethicalvaluesareimportantwhenconsideringdevelopmentsinmedicalprofilingandonlinemedicine:
1Privateinformationshouldbesafeguarded.
2Individualsshouldbeabletopursuetheirowninterestsintheirownway.
3Thestateshouldacttoreduceharm.
4Publicresourcesshouldbeusedfairlyandefficiently.
5Socialsolidarity(sharingrisksandworkingtogethertoprotectthevulnerable)shouldinformpublicpolicy.
ConflictingethicalvaluesTheseethicalvaluesoftenconflictwithoneanother.Allareimportantandnoonevalue‘trumps’another.
Inthefollowingcasestudies,weexaminethebenefitsandharmsineachsituation.Wethenattemptto‘soften’theconflictsbetweentheethicalvaluesbyrespectingeachofthemasmuchaspossibleandmakingrecommendationsthatareevidence-based,proportionateandfeasible[Chapter3].
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04 NUFFIELDCOUNCILONBIOETHICS
Intervention Ifthereisbroadagreementthatanewdevelopmentinmedicalprofilingandonlinemedicineislikelytocausesignificantharm,theninterventionbygovernmentsorotherorganisationsisjustified.
TypesofinterventionCoercivevsnon-coerciveSomeinterventionsinvolveformalstate-specificformsofcoercion,suchaslawsandregulations,whileothersdonot,suchasvoluntarycodesofconductoreducationcampaigns.
SpecificvsgeneralSomeinterventionsarespecifictotheproductorserviceinquestion,whileothersaremoregeneral,forexamplegeneralprofessionalcodesorrulesaboutdataprotection.
ChoosinginterventionsTheinterventionshouldbeproportionatetotheproblem.Lesscoerciveinterventionsshouldbeexploredfirst,unlessthedegreeofharminaparticularcasemeritsamorestringenttypeofintervention.
Moregeneralformsofinterventionareoftenpreferabletomoreservice-orproduct-specificones,particularlywheretechnologyisrapidlychangingandspecificrulescanquicklybecomeoutdated.
Interventionsshouldalsobefeasible.Theremaybetimeswhenmeasurescouldnotrealisticallybeenforced,wouldbeveryexpensiveorcouldhavenegativesideeffects[Chapter4].
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05NUFFIELDCOUNCILONBIOETHICS
OnlinehealthinformationPeoplehavealwaysbeenabletoaccesshealthinformationinnewspapersandmagazines,buttheinternethasopeneduparangeofnewpossibilitiesforconvenientlyfindingandexchanginginformationonhealth.Thiscanincreasepeople’sinvolvementintheirownhealthandprovidethemwithvaluablesupportfromothers.
However,itisdifficultforpeopletoassesstheaccuracyofinformationtheyaregettingonline,andtheymaynotknowwhohasaccesstoanypersonalinformationtheysubmit.Therearenostrongincentivesforinformationproviderstofollowbestpractice.
Thebestwebsitesarebasedonhighqualityresearch,originatefromanindependentnot-for-profitorganisation,areindependentlyevaluatedandcontinuouslyupdated.
Weconclude…•Allwebsitescontaininghealthinformationshouldcontain
keydetailsabout,forexample,thebasisoftheinformation,theauthors,fundingarrangements,andhowanypersonaldatawillbeused.Websitesshouldseekaccreditationfromrecognisedschemes.
•Governmentsshouldensurethathighqualityhealthinformationisavailableontheinternetanddoctorsshoulddirectpatientstothesesites.
•Doctorsshouldreceivetrainingandadviceoncaringforpatientswhousetheinternettoaccessinformationaboutdiagnosisandtreatment[Chapter5].
Case studies
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06 NUFFIELDCOUNCILONBIOETHICS
OnlinepersonalhealthrecordsBothpublicandprivatehealthcareprovidersarestartingtoofferonlinehealthrecordsservices.
ThroughitsHealthSpacewebsite,theNHScurrentlyintendstoprovideeveryoneinEnglandwithonlineaccesstoasummaryoftheirmedicalrecords,includinginformationabouttheircurrentandpasthealthproblems,medicationandallergies.
Severalcommercialcompanies,mainlyintheUS,provideservicesthatallowpeopletoorganisetheirpersonalhealthinformation,integratehealthrecordsfromdifferentproviders,andsharethemwithotherpeople,includinghealthcareprofessionals.
Theseservicesallowmoreconvenientandpatient-centredcontrolofhealthrecords.However,thereispotentialformisuseofstoredinformation.
Weconclude…•Governmentsshouldsetupaccreditationschemesforonline
healthrecordproviderstoimprovetransparencyandstandardsonhowpersonalinformationisstoredandused.Providersoftheseservicesshouldseekaccreditationfromsuchschemes.
•Duringthesigning-upprocess,onlinehealthrecordprovidersshouldprovidepotentialuserswithinformationaboutdatasecurityandlegalrights.
•ResponsiblebodiesintheEU,suchastheUKInformationCommissioner’sOffice,shouldapplyEuropeanUniondataprotectionlegislationtoonlinehealthrecordsusedbypeopleintheEU[Chapter6].
Case studies continued
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07NUFFIELDCOUNCILONBIOETHICS
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08 NUFFIELDCOUNCILONBIOETHICS
BuyingmedicinesonlineOnlinepharmaciescanallowpeopletobuymedicinesconvenientlyandprivately.GreatBritainhasaregistrationsystemforonlinepharmaciestohelppeopleidentifylegitimatewebsites.
Theinternetcanalsobeusedtobuymedicinesforwhichpeopledonothaveaprescriptionandwhichareillegalintheircountry.Peopledoingthisriskbuyingharmful,fakeorlowqualitymedicinesandcouldmissoutonadviceofferedbydoctorsandpharmacists.Itcouldalsoleadtoanincreaseinantibioticresistancearisingfrommisuseofantibiotics.
Theextentofanyharmcurrentlybeingcausedisnotknownbutthepotentialforharmisgreat.Aswithallonlineservices,theinternationalnatureoftheproblemmakesitadifficultareatoregulate.
Weconclude…•Registrationschemesforonlinepharmacies,suchastheone
inGreatBritain,shouldbemirroredinothercountries.
•Governmentwebsitesshouldprovideinformationabouttherisksofbuyingmedicinesonlineandhowtoidentifyaregisteredonlinepharmacy.
•Doctorsshouldreceivetrainingandadviceonhowtodealwithpatientswhomaybebuyingmedicinesonline.
•Governmentsworldwideshouldsetandenforceregulationsonthesupplyofantibioticsintheircountry[Chapter7].
Case studies continued
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09
TelemedicineTelemedicinereferstoanyhealthcarethatinvolvescommunicationstechnologyandanelementofdistance.Itincludespatientsanddoctorscommunicatingwitheachotherelectronically,andmedicaldevicesbeingoperatedremotely.
Althoughsometypesofcarewillalwaysneedtobedeliveredinperson,telemedicinehasthepotentialtooffercaretopeopleintheirownhomeandincreaseequitableaccesstohealthcareservices.
Telemedicinecouldhaveaparticularlypositiveimpactindevelopingcountries,forexample,byenablingdoctorstoseekexpertopinionsfromspecialistsindevelopedcountries.Telemedicinemayalsohaveanimpactonthe‘braindrain’effectofdoctorsmovingfromdevelopingcountriestoworkindevelopedcountries.
Therehasbeenlittleresearchontheimpactofdifferenttypesoftelemedicineondoctor-patientrelationshipsoronwhethertheybringcostsavings.
Weconclude…•Publichealthcaresystemsshouldoffertelemedicine
serviceswheretheycanfeasiblyandcost-effectivelyhelptoreduceinequitiesinaccesstohealthcare.Anyimpactsonthedoctor-patientrelationshipshouldbeevaluated.
•Internationalagenciesshouldencouragetelemedicinenetworksindevelopingcountrieswheretheyareshowntobebeneficial,cost-effectiveandsustainable.
•Developedcountriesshouldmonitoranyimpactsofoutsourcingtheirhealthcareservicestodevelopingcountriesviatelemedicine,forexampleonthe‘braindrain’effect[Chapter8].
NUFFIELDCOUNCILONBIOETHICS
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10 NUFFIELDCOUNCILONBIOETHICS
PersonalgeneticprofilingSeveralcompanies,mainlyUS-based,nowofferpersonalgeneticprofilingservicesfordiseasesusceptibility.AfteranalysingasampleofDNA(e.g.fromasalivasamplesentinthepost),theyclaimtobeabletotellhealthypeopleabouttheirrisksofdevelopingcommondiseasesinfuture,suchascancer,Parkinson’sdiseaseanddiabetes.TheseservicescancostuptoUS$2000.
Thetestsmightprovidereassuranceorenablepeopletotakepreventativeaction.However,thereareanumberofpotentialdownsides:
•Thetestresultscanbeunreliableanddifficulttointerpret.
•‘Good’resultsmayleadtocomplacencyinlifestyle.
•Learningaboutriskofdiseasecouldbeupsetting,particularlyifnotreatmentsareavailable.
•Thereispotentialformisuseofpersonalgeneticinformation.
•Peoplemayseekunnecessaryfurthertestsoradvicefromtheirdoctor.
Thenumberofpeopleusinggeneticprofilingservicesandwhetherthisiscurrentlyleadingtoanyactualharmisnotknown.
Weconclude…•Regulatorsshouldrequestevidenceforanyclaimsbeingmadeby
companiesabouttheclinicalvalueoftheirtests.
•Governmentwebsitesshouldprovideinformationabouttherisksandbenefitsofpersonalgeneticprofiling,includingtherelevanceforinsurance.
•CompaniesshouldnotknowinglyanalysetheDNAofchildrenunlesscertaincriteriaaremet.
•Doctorsshouldreceivetrainingongivingadvicetopatientsaboutcommercialgeneticprofilingservices.
•Companiesshouldvoluntarilyprovideclearinformationonthelimitationsofgeneticprofilingandwhatwillhappentopeople’sdata[Chapter9].
Case studies continued
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11
BodyimagingCommercialcompaniesarenowofferingpeoplea‘healthMOT’usingbodyimagingtechnologiessuchasCTandMRIscans.Theyclaimtolookforearlysignsofconditionssuchascancerandheartdisease,andcancostmorethan£1000.
Thetestscanputpeople’smindsatrest,orencouragethemtoseektreatmentandmakelifestylechanges.However,thereareanumberofpotentialdownsides:
•CTscansexposepeopletoradiation,whichcanbeharmful.
•Theresultscanbedifficulttointerpret.
•MRIscansoftenpickup‘abnormalities’whichareactuallyharmless,butwhichcouldleadtounnecessaryanxietyandfurtherinvasivetests.
•Thereispotentialformisuseofpersonalhealthinformation.
Thenumberofpeopleusingdirect-to-consumerbodyimagingservicesandwhetherthisiscurrentlyleadingtoanyactualharmisnotknown.
Weconclude…•Companiesthatsellbodyimagingservicesasahealthcheck
shouldberegulatedtoensuretheyaremeetingstandardsofqualityandsafety.
•Direct-to-consumerwholebodyCTimagingshouldbebanned.Part-bodyCTscansshouldonlytakeplaceifitisinthebestinterestsofthecustomer.
•Governmentwebsitesshouldprovideinformationabouttherisksandbenefitsofcommercialbodyimaging,includingtherelevanceforinsurance.
•Companiesshouldvoluntarilyprovideclearinformationonthelimitationsofdirect-to-consumerbodyimaging,andwhatwillhappentopeople’sdata.
•Doctorsshouldreceivetrainingongivingadvicetopatientsaboutdirect-to-consumerbodyimagingservices[Chapter10].
NUFFIELDCOUNCILONBIOETHICS
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12 NUFFIELDCOUNCILONBIOETHICS
Conclusions
PersonalisationAllthedevelopmentsinmedicalprofilingandonlinemedicineconsideredinthereportofferincreased‘personalisation’tosomeextent.Butmanyoftheclaimsformoreindividualiseddiagnosisandtreatmentseemtobeoverstatedandshouldbetreatedwithcautionatthepresenttime.Forexample,commercialgeneticprofilingandbodyimaginghavethepotentialtotailorhealthcaretotheindividual,butthatpotentialhasyettobefullyrealised.
ConsumerisationAllthedevelopmentsconsideredbythereportcanlendthemselvestotheprovisionofhealthcareasaconsumergood.Wethinkchoiceisoftenagoodthing,buttoworkeffectivelyinhealthcareitneedstobeaccompaniedbyproperinformationandadvice.
Wealsoneedtofindwaysofbalancingindividualchoicewiththeprincipleofsocialsolidarity–i.e.thatweshouldsharetheresponsibilitytohelppeopleinneed.
ResponsibilisationThedevelopmentsconsideredinthisreportcanleadtonewobligationsandexpectationsfortheindividualswhousethem.Forexample,onlinepersonalhealthrecordssystemscanplacenewdemandsonindividualstochecktheirrecordsandensuretheirsecurity.
Wethinkresponsibilityforhandlingnewrisksassociatedwiththesedevelopmentsshouldbeplacedinthehandsofthosebestplacedtomanageit.Insomecasesthisisthestate,insomecasesthemedicalprofessional,andinothercasestheindividual.Eachcaseneedstobeconsideredonitsownmerits.
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Copiesofthereportandthisguideareavailabletodownloadat:www.nuffieldbioethics.org
Toorderaprintedcopy,[email protected]
PublishedbyNuffieldCouncilonBioethics28BedfordSquareLondonWC1B3JS
Telephone:+44(0)2076819619
©NuffieldCouncilonBioethics2010
PublishedOctober2010
SummaryNewdevelopmentsinmedicalprofilingandonlinemedicinearepromisedbytheirprovidersasleadingtoaneweraof‘personalisedhealthcare’.
‘Personalisedhealthcare’canhavedifferentmeanings,includinghealthcarethatistailoredtotheindividualandhealthcarethatgivesmoreresponsibilitytotheindividual.
Anumberofnewdevelopmentsinmedicalprofilingandonlinemedicineareconsideredascasestudies:
•Personalgeneticprofiling
•Direct-to-consumerbodyimaging
•Onlinehealthinformation
•Buyingmedicinesonline
•Onlinepersonalhealthrecords
•Telemedicine
Thebenefitsandharmsofeachareweighedup,alongwiththeethicalvaluesthatcomeintoplay,suchasindividualsbeingabletopursuetheirowninterestsandeffortsbythestatetoreduceharm.Wequestionthedegreeofpersonalisationachievedbythenewdevelopmentsandalsotheirimplicationsfor‘consumerisation’and‘responsibilisation’ofhealthcare.Recommendationsforpolicyandpracticearemadeineachcase.