{"id":4039,"date":"2017-01-20T15:15:44","date_gmt":"2017-01-20T15:15:44","guid":{"rendered":"https:\/\/www.wma.net\/wp-content\/uploads\/2017\/01\/Adebamowo-Perspectives-on-Biobanking.pdf"},"modified":"2017-01-20T15:15:44","modified_gmt":"2017-01-20T15:15:44","slug":"adebamowo-perspectives-on-biobanking-2","status":"inherit","type":"attachment","link":"https:\/\/www.wma.net\/es\/adebamowo-perspectives-on-biobanking-2\/","title":{"rendered":"Adebamowo-Perspectives-on-Biobanking"},"author":2,"comment_status":"open","ping_status":"closed","template":"","meta":[],"acf":[],"description":{"rendered":"

Adebamowo-Perspectives-on-Biobanking<\/a><\/p>\n

1
\nBiobanks)and)Genomics)\u2013 Perspectives)from)Africa
\nClement)Adebamowo)
\nMD)FACS)FWACS) DSc
\nChairman)of)National)Health)Research)Ethics)Committee) of)Nigeria,)Federal)Ministry)of)Health,)Abuja,)FCT,)NigeriaJ
\nPI)West)African)Bioethics)Training)ProgramJ)
\nProfessor)of)Cancer)Epidemiology,)Department) of)Epidemiology)and)Public)Health,)
\nAssociate)Director)(Population) Sciences))Greenebaum)Cancer)Center,)Member)of)the)Institute)of)Human)Virology,)University)of)Maryland)
\nSchool)of)Medicine,)Baltimore,)MD)21201
\ncadebamowo@som.umaryland.edu
\n2
\nCharacteristics, of,African,health,research,
\nenvironment, and,their,implication,for,research
\n\u2022 Health,indices,,resources,and,access
\n\u2013 Poor,health,indices
\n\u2013 Poor,health,infrastructure
\n\u2013 Limited,access,to,good,quality,health,care
\n\u2022 Patterns,of,diseases,and,health
\n\u2013 Persistent,communicable,diseases
\n\u2013 Rapidly,progressing,nonBcommunicable,diseases,epidemic
\n3
\nCharacteristics,of,African,health,research,environment,and,
\ntheir,implication,for,research
\n\u2022 SocioBeconomic,parameters
\n\u2013 Poverty,and,rapid,transformation,in,income,levels
\n\u2013 Urbanization,\u2013 reduced,physical,activity,,changing,diet
\n\u2013 Religion,,culture,and,practices
\n\u2022 Education
\n\u2013 Low,levels,of,health,professionals\u2019,knowledge,about,
\ngenomics
\n\u2013 Low,levels,of,general,population\u2019s,knowledge,about,
\nhealth,in,general,and,genomics,in,particular
\n4
\nBiobanks
\n\u2022 Biobanks,are,now,an,increasingly,common,tool,of,biomedical,
\nresearch,throughout,the,world
\n\u2022 While,pathology,laboratories,in,Africa,have,often,stored,residual,
\ntissue,samples,from,biopsies,and,autopsies,for,long,periods,after,
\nprimary,utilization,,and,used,such,tissues,in,research,,the,
\nmodern,concept,of,biobanks,is,new,to,the,continent
\n\u2022 A,characteristic,of,most,prospective,biobanks,is,that,samples,and,
\ndata,are,collected,for,longBterm,future,use,,not,just,for,a,single,
\nproject
\n\u2022 At,the,time,of,establishment,of,collections,of,samples,and,
\nrelated,data,,it,is,not,known,and,it,is,impossible,to,anticipate,all,
\nthe,studies,may,eventually,use,this,resource
\n5
\nGenomic,research,and,biobanking,in,Africa
\n\u2022 Given,that,African,research,currently,accounts,for,2.5%,of,global,
\nhealth,research,despite,having,most,of,the,intractable,and,emerging,
\nhealth,problems,,it,is,important,to,ensure,that,biobanking,and,
\ngenomics,research,are,used,to,effectively,contribute,to,African,
\nresearch,enterprise,because:
\n\u2013 Genomics,research,supported,by,biobanking,offer,pathways,to,
\nnew,solutions,for,Africa\u2019s,old,public,health,problems,\u2013 HPV,DNA,
\ntesting,is,better,than,Pap,smear,in,reducing,mortality,from,
\ncervical,cancer,B NEJM.,2009;,360:,1385B94
\n6
\nGenomic,research,and,Africa
\n\u2013 Results,of,genomics,research,in,Africa,informs,understanding,and,
\napplication,of,research,in,other,populations,B Variation,in,APOL1,
\ngene,may,contribute,to,high,rates,of,kidney,disease,in,African,
\nAmericans,Science.,2010;,329:,841B5
\n\u2013 Genomics,research,has,potential,to,contribute,to,reduction,in,
\nglobal,health,inequalities,through,\u201can,enhanced,translational,
\ngenomics,and,population,sciences,agenda\u201d,CEBP,2011;,20:,2105,B
\n14
\n\u2013 Genomics,research,tends,to,be,a,catalyst,for,systemBwide,
\ninnovation,,interest,and,investment,in,medical,research,in,general
\n7
\nGenomic,research,and,biobanking,in,Africa
\n\u2022 Biobanking,as,part,of,research,in,Africa,is,required,because,of:
\n\u2013 Role,of,Africa,in,human,ancestry
\n\u2013 Huge,genomic,,socioBeconomic,,cultural,(diet,,religion,,
\npractices),,climatic,heterogeneity,on,the,continent,and,their,
\nimpact,on,health,and,diseases
\n\u2013 Potential,for,huge,contributions,to,understanding,disease,
\npathways,,new,approaches,to,treatment,and,prevention,,
\ndrug,discovery,and,pharmacogenomics
\n\u2013 Widespread,use,and,contribution,of,genomics,research,in,
\ndeveloped,countries
\n8
\nMedical,records,and,health,databases
\n\u2022 Most,African,health,care,systems,are,plagued,by,challenges,with,
\nrecording,and,maintaining,health,databases
\n\u2022 Health,systems,in,Africa,were,traditionally,set,up,and,funded,to,
\nrespond,to,acute,illnesses,such,as,infectious,diseases,and,trauma,
\nand,not,to,complex,diseases,that,require,long,term,management,
\nand,follow,up
\n\u2022 There,has,therefore,been,minimal,investment,in,health,databases,
\nand,medical,records
\n\u2022 Recent,interventions,like,PEPFAR,led,to,creation,of,large,databases,
\noften,targeted,to,meeting,reporting,requirements,of,funding,
\nagencies
\n9
\nControversies, B Power,disequilibrium, at,individual,level,
\n\u2022 Concern,about,the,perceived,\u201cvalue\u201d,of,the,contributions,of,the,
\nindividual
\n\u2013 For,example,how,do,we,compare,the,contributions,,recognitions,and,
\nrewards,given,to,
\n\u2022 (a),Raji,\u2013 an,11,year,old,Yoruba,boy,with,Burkitt\u2019s,lymphoma,
\nwhose,cells,,in,1963,,gave,rise,to,the,Raji,cell,line,\u2013 the,first,
\ncontinuous,human,cell,line,of,hematopoietic,origins,(Pulvertaft,
\nJV.,Cytology,of,Burkitt’s,tumour,(African,lymphoma).,Lancet,1:,
\n238B240,,1964),with,
\n\u2022 (b),the,anonymous,Yoruba,participant,in,the,first,phase,of,the,
\nInternational,HapMap,project,who,genome,was,one,of,the,first,to,
\nbe,completely,sequenced,and,
\n\u2022 (c).,Henrietta,Lacks,of,HeLa,cells,fame
\n10
\nControversies,\u2013 diminution,of,the,value,assigned,to,individuals,
\nand,to,community,particularly,when,data,is,deBidentified,or,
\nanonymized
\n\u2022 Where,am,I?,
\n\u2022 Where,are,we?,
\n11
\nControversies, \u2013 Trust,as,the,most,important,ethical,basis,for,
\nparticipation, in,research,
\n\u2022 Trust,\u2013 is,the,commonest,reason,we,found,why,people,participate,in,
\ngenomics,research.
\n\u2022 Yet,,these,are,often,people,who,have,little,trust,in,their,government,or,
\npolitical,systems
\n\u2022 The,manifestation,of,trust,within,the,research,context,is,highly,nuanced
\n\u2022 Significant,variations,exist,between,communities,in,the,expression,and,
\nmanifestations,of,this,trust
\n\u2022 Has,not,received,as,much,or,as,rigorous,an,evaluation,as,required,
\nbecause,it,is,difficult,to,study,objectively
\n12
\nChallenges,\u2013 Trust,and,consent
\n\u2022 Majority,of,the,respondents,supported,the,use,of,broad,consent,
\nfor,biobank research,,while,a,significant,minority,prefer,tiered,
\nand,restricted,consent,approach,because,they,want,to,receive,
\nfeedback,on,donated,samples,and,would,like,to,know,the,
\nresearch,that,could,be,done,with,their,specimen,in,the,future
\n\u2013 I\u00bbprefer\u00bbthe\u00bbtiered\u00bbconsent,\u00bbbut\u00bbmay\u00bbthereafter\u00bbgive\u00bba\u00bbbroad\u00bbconsent\u00bbif\u00bbI\u00bb
\nam\u00bbgiven\u00bbfeedback\u00bbon\u00bbwhat\u00bbhas\u00bbbeen\u00bbdone\u00bbwith\u00bbmy\u00bbspecimen.Male,
\nMedical,Doctor,urban,B6,\u2013 Kano
\n\u2013 I\u00bbwould\u00bblike\u00bbto\u00bbbe\u00bbinformed\u00bbbefore\u00bbmy\u00bbspecimen\u00bbis\u00bbused\u00bbfor\u00bbanother\u00bb
\nresearch\u00bb(i.e.\u00bbtiered\u00bbconsent).\u00bbEven\u00bbwhen\u00bbI\u00bbhave\u00bbmoved\u00bbaway\u00bbfrom\u00bbmy\u00bb
\nprevious\u00bblocation,\u00bbinquiries\u00bbshould\u00bbbe\u00bbmade\u00bbat\u00bbmy\u00bbprevious\u00bblocation\u00bbfor\u00bb
\nmy\u00bbwhere\u00bbabout.
\nMale,Spokesperson,rural,D1,B Enugu
\n13
\nChallenges,\u2013 Trust,and,consent
\n\u2022 Since\u00bbI\u00bbwould\u00bbnot\u00bbgive\u00bbbroad\u00bbconsent,\u00bbI\u00bbwill\u00bbnot\u00bbpermit\u00bbsharing\u00bbof\u00bbmy\u00bb
\nspecimen.\u00bbThe\u00bbother\u00bbgroup\u00bbof\u00bbresearchers\u00bbshould\u00bbapproach\u00bbme\u00bbfor\u00bbuse\u00bbof\u00bb
\nmy\u00bbspecimens.\u00bbI\u00bbwill\u00bbhave\u00bbno\u00bbobjection\u00bbif\u00bbyou\u00bbwant\u00bbto\u00bbtake\u00bbit\u00bbabroad\u00bbfor\u00bb
\nanalysis,\u00bbprovided\u00bbother\u00bbparticipants\u00bballow\u00bbthat.
\nMale,Community,Leader,urban,B4,\u2013 Kano
\n\u2022 For\u00bbme\u00bbthere\u00bbno\u00bbproblem\u00bbif\u00bbyou\u00bbshare\u00bbmy\u00bbspecimen\u00bbwith\u00bbother\u00bbresearchers.\u00bb
\nFor\u00bbexample\u00bbwhen\u00bbI\u00bbwas\u00bbdoing\u00bbmy\u00bbdiploma\u00bb programme,\u00bbI\u00bbwent\u00bbto\u00bbanother\u00bb
\nplace\u00bbto\u00bbobtain\u00bbmy\u00bbdata\u00bband\u00bbthey\u00bbagreed\u00bbto\u00bbshare\u00bbwith\u00bbme.\u00bbIf\u00bbI\u00bbhave\u00bba\u00bb
\ndisease\u00bband\u00bbthey\u00bbwant\u00bbto\u00bbtake\u00bbmy\u00bbspecimen\u00bbabroad,\u00bbthey\u00bbshould\u00bblet\u00bbme\u00bb
\nknow.\u00bbThough,\u00bbmy\u00bbreason\u00bbis\u00bbto\u00bbget\u00bbthe\u00bbinformation\u00bb so\u00bbthat\u00bbI\u00bbcan\u00bbseek\u00bbfor\u00bb
\nsolution.
\nMale,Spokesperson,rural,C14,B FCT
\n14
\nControversies, B Intersection, between, culture,
\nand,biobanking
\n\u2022 The,banking,of,body,fluids,and,tissues,may,raise,significant,
\nconcerns,at,the,intersection,of,science,,religion,and,culture.,
\nIllustrative,experience,of,use,of,umbilical,cord,blood,for,
\nresearch
\n\u2022 Certain,biological,samples,have,very,high,and,significant,
\ncultural,values
\n\u2022 Research,and,banking,of,such,samples,raise,significant,
\ncultural,and,ethical,concerns,in,the,community
\n15
\n\u2022 Lay\u00bbopinion\u00bbabout\u00bbthe\u00bbafterbirth
\n\u2013 Umbilical\u00bbcord\u00bbor\u00bbafterbirth\u00bbis\u00bba\u00bbdangerous\u00bbthing\u00bbto\u00bbplay\u00bbwith\u00bbin\u00bbYoruba\u00bbland,\u00bbsince\u00bbit\u00bb
\nconnects\u00bbthe\u00bb\u00bbchild\u00bbto\u00bbthe\u00bbmother,\u00bbYoruba\u00bbbelieve\u00bbthat\u00bbhow\u00bbit\u00bbis\u00bbhandled\u00bbcan\u00bbchange\u00bbthe\u00bb
\ndestiny\u00bbof\u00bba\u00bbchild.
\n\u2013 That\u00bbis\u00bbwhat\u00bbmany\u00bbpregnant\u00bbwomen\u00bbfear\u00bbduring\u00bbchildbirth and\u00bbthey\u00bbare\u00bbeager\u00bbto\u00bbcollect\u00bb
\nthe\u00bbumbilical\u00bbcord\u00bband\u00bbafter\u00bbbirth\u00bband\u00bbgive\u00bbit\u00bbto\u00bbthe\u00bbfather\u00bbof\u00bbthe\u00bbchild\u00bb(husbands).
\n\u2013 Yoruba,says \u201cki aye\u00bbma\u00bbfi\u00bbbi\u00bbomo mu\u00bbwa\u201d\u00bb\u2013 (May\u00bbwe\u00bbnot\u00bbbe\u00bbvulnerable\u00bbto\u00bbour\u00bbenemies\u00bb
\nthrough\u00bbthe\u00bbumbilical\u00bbcord)
\n\u2022 A,traditional,religion,priest,
\n\u2013 burning\u00bbthe\u00bbumbilical\u00bbcord\u00bbis\u00bbbest\u00bbthing\u00bbto\u00bbdo\u00bband\u00bbit\u00bbmust\u00bbdone\u00bbwhen\u00bbpeople\u00bbare\u00bbnot\u00bb
\naround,\u00bbmay\u00bbbe\u00bbin\u00bbthe\u00bbnight\u00bbat\u00bba\u00bblocation\u00bbthat\u00bbis\u00bbwet,\u00bbso\u00bbthat\u00bbthat\u00bbchild\u00bblife\u2019s\u00bbwill\u00bbbe\u00bbcool\u00bb
\nand\u00bbprosperous.
\n\u2022 A,Senior,Nursing,Officer
\n\u2013 the\u00bbimportance\u00bbof\u00bbthe\u00bbafterbirth\u00bbis\u00bbthat\u00bbafter\u00bba\u00bbwoman\u00bbhas\u00bbhad\u00bbsex\u00bbwith\u00bba\u00bbman\u00bband\u00bb
\nmissed\u00bbher\u00bbperiod,\u00bbGod\u00bbwill\u00bbput\u00bbthe\u00bbplacenta\u00bbbeside\u00bbthe\u00bbfetus\u00bband\u00bbthis\u00bbbrings\u00bbabout\u00bbthe\u00bb
\ncordial\u00bbrelationship\u00bbbetween\u00bbmother\u00bband\u00bbchild\u00bbthat\u00bbis\u00bbresponsible\u00bbfor\u00bbthe\u00bbchild\u2019s\u00bbbreath\u00bb
\nand\u00bbthe\u00bbchild\u2019s\u00bbfeedings
\nControversies,B Intersection,between,culture,and,biobanking
\n16
\nControversies, \u2013 Sharing,of,biological,samples
\n\u2022 Sample,export,and,ownership
\n\u2013 Research,participants,often,express,concern,about,transfer,of,
\nsamples,to,specific,countries,and,use,in,specific,types,of,research
\n\u2013 My\u00bbconsent\u00bbhas\u00bbto\u00bbbe\u00bbobtained\u00bbagain\u00bbbefore\u00bbyou\u00bbshare\u00bbmy\u00bb
\nspecimen\u00bbwith\u00bbother\u00bbresearchers.\u00bbI\u00bbam\u00bba\u00bbhealth\u00bbworker\u00bbI\u00bbknow\u00bb
\nwhat\u00bbam\u00bbheading\u00bbto. B Male,Medical,Doctor,urban,D9,B Enugu
\n\u2013 You\u00bbcan\u00bbshare\u00bbmy\u00bbspecimen\u00bbwith\u00bbother\u00bbresearchers,\u00bbI\u00bbdo\u00bbnot\u00bbhave\u00bb
\nproblem\u00bbwith\u00bbthat.\u00bbYou\u00bbmay\u00bbalso\u00bbtake\u00bbthe\u00bbsamples\u00bbto\u00bbothers\u00bb
\ncountries\u00bbas\u00bblong\u00bbas\u00bbit\u00bbis\u00bbnot\u00bbused\u00bbfor\u00bbhuman\u00bbcloning\u00bband\u00bbthings\u00bb
\nthat\u00bbChristianity\u00bbwill\u00bbfrown\u00bbat.\u00bbFemale,Pharmacist,Urban,D18,B
\nEnugu
\n17
\nControversies, \u2013 feedback,of,results
\n\u2022 Participants,in,general,wanted,some,form,of,feedback.,Where,
\nthe,results,of,the,research,is,likely,to,be,related,to,heritable,
\ntreatable,or,untreatable,serious,illness,,participants,strongly,
\nfavoured,return,of,results
\n\u2013 I\u00bbneed\u00bbfeedback\u00bbon\u00bbmy\u00bbresult.\u00bbSince\u00bbI\u00bbwill\u00bbgive\u00bbyou\u00bbmy\u00bbspecimen\u00bbon\u00bbtrust,\u00bbI\u00bb
\nwill\u00bbrequire\u00bbfeedback,\u00bband\u00bbif\u00bbit\u00bbis\u00bbnot\u00bbdone\u00bbI\u00bbwill\u00bbbe\u00bbworried.
\nMale,Traditionalist,and,previous,research,participant,urban,A8,
\n\u2013 It\u00bbis\u00bbimportant\u00bbfor\u00bbme\u00bbto\u00bbknow,\u00bbif\u00bbthe\u00bbbiobank\u00bbdiscover\u00bbsomething\u00bbserious\u00bb
\nabout\u00bbmy\u00bbhealth,\u00bbthey\u00bbshould\u00bblet\u00bbme\u00bbknow.\u00bb
\nFemale,Pharmacist,Urban,D18,\u2013 Enugu
\n\u2013 I\u00bbshould\u00bbbe\u00bbgiven\u00bbcounselling\u00bbbefore\u00bbam\u00bbgiven\u00bbany\u00bbfeedback.\u00bbIt\u00bbshould\u00bb
\ninvolve\u00bbpreNcounselling.Male,Medical,Doctor,urban,D9,B Enugu
\n18
\nControversies, \u2013 Impact,of,religion
\n\u2022 Christians,and,Muslims,alike,wanted,their,religion,to,be,taken,
\naccount,of,with,respect,to,how,their,donated,samples,are,used.
\n\u2013 Anything\u00bbrelated\u00bbto\u00bbhealth,\u00bbmy\u00bbMuslim\u00bbreligion\u00bbis\u00bbnot\u00bbagainst\u00bbit. Female,
\nPharmacy,Technician\/spokesperson,urban,B3,B Kano
\n\u2013 Like\u00bbI\u00bbmentioned\u00bbbefore,\u00bbthe\u00bbsamples\u00bbmay\u00bbbe\u00bbused\u00bbfor\u00bbunethical\u00bbpractices\u00bb
\nsuch\u00bbas\u00bbhuman\u00bbcloning\u00bbwhich\u00bbwill\u00bbinterfere\u00bbwith\u00bbmy\u00bbChristian\u00bbbelief.\u00bb
\nUncertainty\u00bbon\u00bbthis\u00bband\u00bblimited\u00bbknowledge\u00bbon\u00bbthe\u00bbreligious\u00bbimplication\u00bbon\u00bb
\nmy\u00bbaction\u00bbcan\u00bbmake\u00bbme\u00bbchange\u00bbmy\u00bbmind\u00bbof\u00bbparticipating\u00bbin\u00bbthe\u00bbresearch.\u00bb
\nFemale,Pharmacist,Urban,D18,B Enugu
\n19
\nControversies, \u2013 Impact,of,religion
\n\u2022 My\u00bbconcern\u00bbis\u00bbthat\u00bbthey\u00bbmay\u00bbuse\u00bbthe\u00bbbiobank\u00bbfor\u00bbsomething\u00bbthat\u00bbwill\u00bb
\nnot\u00bbplease\u00bbGod,\u00bbfor\u00bbexample\u00bboccultism.\u00bbFrom\u00bbthe\u00bbresearch,\u00bbthose\u00bb
\nthat\u00bbdid\u00bbnot\u00bbknow\u00bbthey\u00bbhad\u00bbdisease\u00bbwill\u00bbget\u00bbto\u00bbknow\u00bbit.\u00bbIt\u00bbmay\u00bbbe\u00bb
\nHIV\/AIDS\u00bband\u00bbit\u00bbwill\u00bbaffect\u00bbthem\u00bbpsychologically.\u00bb I\u00bbwill\u00bbfeel\u00bbbad\u00bbif\u00bb
\nthey\u00bbkeep\u00bbour\u00bbspecimens\u00bbwithout\u00bbcarrying\u00bbout\u00bbresearch\u00bbon\u00bbthem,\u00bb
\nbecause\u00bbI\u00bbbelieve\u00bbthey\u00bbwill\u00bbget\u00bbback\u00bbto\u00bbone\u00bbof\u00bbus\u00bbas\u00bba\u00bbfeedback\u00bbif\u00bbthey\u00bb
\ncarry\u00bbout\u00bbresearch\u00bbon\u00bbour\u00bbspecimen.\u00bbIf\u00bbthere\u2019s\u00bbsegregation\u00bbwhereby\u00bb
\nthey\u00bbgive\u00bbsome\u00bbpeople\u00bbfeedback\u00bband\u00bbI\u00bbam\u00bbnot\u00bbgiven\u00bbI\u00bbwill\u00bbnot\u00bbbe\u00bb
\nhappy.
\n\u2022 Male,Spokesperson,rural,C14,B FCT
\n20
\nControversies, \u2013 Impact,of,genomic,research,and,
\nbiobanking,on,ethnicity
\n\u2022 Information,on,ethnicity,may
\n\u2013 Raise,specter,of,discrimination,and,stigmatization,against,individuals,or,
\ncommunities
\n\u2013 Engender,a,sense,of,pride,and,accomplishment
\n\u2022 The,people,of,AbaBAlamu,for,example,were,proud,of,their,
\ncontribution,to,the,HapMap,because
\n\u2013 It,reflected,restored,ethnic,leadership,and,pride,in,education,and,science
\n\u2013 They,were,contributing,to,deBstigmatization,of,Nigerians
\n\u2013 They,were,contributing,to,the,health,and,prosperity,of,African,Americans
\n\u2013 They,were,contributing,meaningfully,to,global,advancement,in,health,and,
\nscience
\n21
\nControversies, \u2013 Use,of,health,records
\n\u2022 Many,respondents,do,not,have,any,concerns,about,use,of,,
\ninformation,from,their,medical,records,because,they,believe,they,
\nhad,nothing,to,hide.
\n\u2022 The,main,concern,was,the,general,issue,of,donors\u2019,anonymity,
\nwhen,information,is,being,made,available,in,the,public,domain.,
\n\u2022 However,confidentiality,was,considered,a,significant,issue.,
\nRespondents,felt,that,if,they,are,not,confident,about,the,
\nprocedures,in,place,to,respect,participants\u2019,confidentiality,,they,
\nmay,withdraw,participation.,
\n\u2022 Respondents,,believed,that,if,information,is,properly,encoded,or,
\nencrypted,it,will,not,be,accessible,to,people,unauthorized.,
\n22
\nRelevant,sections,of,Nigerian,Health,Law
\n\u2022 In,2014,,Nigeria,enacted,a,law,whose,purpose,is,to,\u201cprovide,a,
\nframework,for,the,regulation,,development,and,management,
\nof,a,national,health,system,and,set,standards,for,rendering,
\nhealth,services,in,the,federation,,and,for,related,matters\u201d
\n\u2022 In,many,parts,this,law,is,similar,to,laws,passed,in,South,Africa,,
\nand,Sudan,,and,possibly,other,African,countries
\n\u2022 This,law,established,the,National,Health,Research,Ethics,
\nCommittee,and,contains,several,sections,that,deal,with,health,
\nrecords,and,databases
\n23
\nRelevant,sections,of,Nigerian,Health,Law
\n\u2022 All,information,concerning,a,user,,including,information,relating,to,
\nhis,or,her,health,status,,treatment,or,stay,in,a,health,
\nestablishment,is,confidential
\n\u2022 The,person,in,charge,of,a,health,establishment who,is,in,
\npossession,of,a,user\u2019s,health,records,shall,set,up,control,measures,
\nto,prevent,unauthorised,access,to,those,records,and,to,the,
\nstorage,facility,in,which,,or,system,by,which,,records,are,kept.
\n24
\nRelevant,sections,of,Nigerian,Health,Law
\n\u2022 Any,person,who\u2014
\n\u2013 (a),fails,to,perform,a,duty,imposed,on,them,under,subsection,(1);
\n\u2013 (b),falsifies,any,record,by,adding,to,or,deleting,or,changing,any,
\ninformation,contained,in,that,record;
\n\u2013 (c),creates,,changes,or,destroys,a,record,without,authority,to,do,so;
\n\u2013 (d),fails,to,create,or,change,a,record,when,properly,required,to,do,so;
\n\u2013 (e),provides,false,information,with,the,intent,that,it,be,included,in,a,
\nrecord;
\n\u2013 (f),without,authority,,copies,any,part,of,a,record;
\n25
\nRelevant,sections,of,Nigerian,Health,Law
\n\u2013 (g),without,authority,,connects,the,personal,identification,elements,of,a,
\nuser\u2019s,record,with,any,element,of,that,record,that,concerns,the,user\u2019s,
\ncondition,,treatment,or,history;
\n\u2013 (h),gains,unauthorised,access,to,a,record,or,recordBkeeping,system,,
\nincluding,intercepting,information,being,transmitted,from,one,person,,
\nor,one,part,of,a,recordBkeeping,system,,to,another;
\n\u2013 (i),without,authority,,connects,any,part,of,a,computer,or,other,
\nelectronic,system,on,which,records,are,kept,to\u2014 (i),any,other,computer,
\nor,other,electronic,system;,or (ii),any,terminal,or,other,installation,
\nconnected,to,or,forming,part,of,any,other,computer,or,other,electronic,
\nsystem;,or
\n26
\nRelevant,sections,of,Nigerian,Health,Law
\n\u2013 without,authority,,modifies,or,impairs,the,operation,of\u2014(i),any,part,
\nof,the,operating,system,of,a,computer,or,other,electronic,system,
\non,which,a,user\u2019s,records,are,kept;,or (ii),any,part,of,the,
\nprogramme,used,to,record,,store,,retrieve,or,display,information,on,
\na,computer,or,other,electronic,system,on,which,a,user\u2019s,records,are,
\nkept,,commits,an,offence,and,is,liable,on,conviction,to,
\nimprisonment,for,a,period,not,exceeding,two,years,or,to,a,fine,of,
\nN250,000.00,or,both,a,fine,and,such,imprisonment.
\n27
\nNHREC,guidance,on,biobanks,and,materials,transfer,
\nagreements,B http:\/\/nhrec.net\/nhrec\/
\n\u2022 National,code,for,health,research,ethics
\n\u2013 SubBcodes,dealing,with,other,aspects,of,health,research
\n\u2022 Forms,for,registration,of,ethics,committees,and,biobanks
\n\u2022 Prototype,documents
\n\u2022 Access,to,educational,materials,and,guidance,documents
\n28
\n29
\nAcknowledgement
\n\u2022 This,work,was,supported,by,grant,number,D43,TW007091,and,
\n3R25TW007091B06S2, from,the,Fogarty,International,Centre,and,
\nthe,National,Human,Genome,Research,Institute,of,the,United,
\nStates,National,Institutes,of,Health
\n\u2022 Mr,Michael,Igbe,(Attitude,to,Biobanking,in,Nigeria),,Mr.,Lawrence,
\nFagbemiro,(Ethics,of,Genomics,Tests,for,NCDs,in,Nigeria),,Dr.,
\nOnochie,Okoye,(Future,unspecified,use,research,in,Nigeria),,Mrs.,
\nBanke,Adeleke
\n\u2022 Supported,by,staff,and,students,of,the,West,African,Bioethics,
\nTraining,Program,Nigeria<\/p>\n"},"caption":{"rendered":"

Adebamowo-Perspectives-on-Biobanking 1 Biobanks)and)Genomics)\u2013 Perspectives)from)Africa Clement)Adebamowo) MD)FACS)FWACS) DSc Chairman)of)National)Health)Research)Ethics)Committee) of)Nigeria,)Federal)Ministry)of)Health,)Abuja,)FCT,)NigeriaJ PI)West)African)Bioethics)Training)ProgramJ) Professor)of)Cancer)Epidemiology,)Department) of)Epidemiology)and)Public)Health,) Associate)Director)(Population) Sciences))Greenebaum)Cancer)Center,)Member)of)the)Institute)of)Human)Virology,)University)of)Maryland) School)of)Medicine,)Baltimore,)MD)21201 cadebamowo@som.umaryland.edu 2 Characteristics, of,African,health,research, environment, and,their,implication,for,research \u2022 Health,indices,,resources,and,access \u2013 Poor,health,indices \u2013 Poor,health,infrastructure \u2013 Limited,access,to,good,quality,health,care \u2022 Patterns,of,diseases,and,health \u2013 Persistent,communicable,diseases \u2013 Rapidly,progressing,nonBcommunicable,diseases,epidemic 3 Characteristics,of,African,health,research,environment,and, their,implication,for,research \u2022 SocioBeconomic,parameters \u2013 Poverty,and,rapid,transformation,in,income,levels \u2013 Urbanization,\u2013 reduced,physical,activity,,changing,diet \u2013 Religion,,culture,and,practices \u2022 Education \u2013 Low,levels,of,health,professionals\u2019,knowledge,about, genomics \u2013 Low,levels,of,general,population\u2019s,knowledge,about, health,in,general,and,genomics,in,particular […]<\/p>\n"},"alt_text":"","media_type":"file","mime_type":"application\/pdf","media_details":{},"post":null,"source_url":"https:\/\/www.wma.net\/wp-content\/uploads\/2017\/01\/Adebamowo-Perspectives-on-Biobanking.pdf","_links":{"self":[{"href":"https:\/\/www.wma.net\/es\/wp-json\/wp\/v2\/media\/4039"}],"collection":[{"href":"https:\/\/www.wma.net\/es\/wp-json\/wp\/v2\/media"}],"about":[{"href":"https:\/\/www.wma.net\/es\/wp-json\/wp\/v2\/types\/attachment"}],"author":[{"embeddable":true,"href":"https:\/\/www.wma.net\/es\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.wma.net\/es\/wp-json\/wp\/v2\/comments?post=4039"}]}}