personalised healthcare short guide (for web)
DESCRIPTION
TRANSCRIPT
Medical profiling and online medicine:
The ethics of ‘personalised healthcare’ in a consumer age
A guide to the report
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
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.
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].
0303NUFFIELDCOUNCILONBIOETHICS
Ethics Thefollowingfiveethicalvaluesareimportantwhenconsideringdevelopmentsinmedicalprofilingandonlinemedicine:
1Privateinformationshouldbesafeguarded.
2Individualsshouldbeabletopursuetheirowninterestsintheirownway.
3Thestateshouldacttoreduceharm.
4Publicresourcesshouldbeusedfairlyandefficiently.
5Socialsolidarity(sharingrisksandworkingtogethertoprotectthevulnerable)shouldinformpublicpolicy.
ConflictingethicalvaluesTheseethicalvaluesoftenconflictwithoneanother.Allareimportantandnoonevalue‘trumps’another.
Inthefollowingcasestudies,weexaminethebenefitsandharmsineachsituation.Wethenattemptto‘soften’theconflictsbetweentheethicalvaluesbyrespectingeachofthemasmuchaspossibleandmakingrecommendationsthatareevidence-based,proportionateandfeasible[Chapter3].
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].
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
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
07NUFFIELDCOUNCILONBIOETHICS
08 NUFFIELDCOUNCILONBIOETHICS
BuyingmedicinesonlineOnlinepharmaciescanallowpeopletobuymedicinesconvenientlyandprivately.GreatBritainhasaregistrationsystemforonlinepharmaciestohelppeopleidentifylegitimatewebsites.
Theinternetcanalsobeusedtobuymedicinesforwhichpeopledonothaveaprescriptionandwhichareillegalintheircountry.Peopledoingthisriskbuyingharmful,fakeorlowqualitymedicinesandcouldmissoutonadviceofferedbydoctorsandpharmacists.Itcouldalsoleadtoanincreaseinantibioticresistancearisingfrommisuseofantibiotics.
Theextentofanyharmcurrentlybeingcausedisnotknownbutthepotentialforharmisgreat.Aswithallonlineservices,theinternationalnatureoftheproblemmakesitadifficultareatoregulate.
Weconclude…•Registrationschemesforonlinepharmacies,suchastheone
inGreatBritain,shouldbemirroredinothercountries.
•Governmentwebsitesshouldprovideinformationabouttherisksofbuyingmedicinesonlineandhowtoidentifyaregisteredonlinepharmacy.
•Doctorsshouldreceivetrainingandadviceonhowtodealwithpatientswhomaybebuyingmedicinesonline.
•Governmentsworldwideshouldsetandenforceregulationsonthesupplyofantibioticsintheircountry[Chapter7].
Case studies continued
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
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
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
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.
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.