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◀of things that had beengoing on in this coun-
tryforyears:pharmacompaniesconductingtests
withoutproper controls,” says Irukera. “Pfizer
claimsit conductedinformedconsent,but we
have no evidenceofthat.These arepeople who
don’tspeakEnglish.”
Ina2009statementannouncingthesettlement,
inwhichPfizerdeniedanywrongdoingorliability,
thegroupsaidthat“the1996studywasconducted
withtheapprovaloftheNigeriangovernmentand
the consentof the participants’parents or guardi-
ans,andwasconsistentwithNigerianlaws”.
Commercialisationhaslongbeenafraughtsub-
jectinscientificresearch,especiallywhenitcomes
to informedconsentand compensation.Ques-
tionsoverwhetherthesubjectshouldbepaidhave
beendebatedfor years. Perhapsthe mostfamous
exampleis HenriettaLacks,the African-Ameri-
can woman whoseunique “immortal”cells were
harvestedbyresearchers withouther knowledge
beforeshe died. Theirindefiniteabilityto grow
means theyhavebeenusedinnearlyevery major
medical advanceinthe past half century,but her
descendantshaveneverreceivedcompensation.
The Lacks case is arelic of atimebefore
informedconsent.ButresearchersinAfricatoday
must figureout howtoobtain it from everyone,
includingthose who maynot yethavewords like
“DNA”or“gene”intheirnativetongue.
TheUK’sWellcomeSangerInstitutewasrecently
embroiledinacontroversyoverwhistleblowercom-
plaintsthatitplannedtomisusesamplesobtained
in Uganda and elsewhereinAfrica. These include
accusations that it was attemptingtocommercial-
ise the products of the research withoutproper
consent.Sanger,oneoftheworld’sleadinggenom-
ics institutions,has deniedthe allegations,citing
twoindependent investigations it commissioned
that found no wrongdoing. In astatement,itsaid:
“Thecauseofconcernwasapotentialcommercial-
isationproposalfromanindividualworkingatthe
Institute at the time. The Institute did not pursue
thisproposal.”
Separately,duringthe2014Ebolaepidemic,doc-
torsand researchers from around the world took
morethan 269,000 blood samples from patients
in Guinea,SierraLeone and Liberia. None gave
consentforthemtobeusedforresearch.Butthou-
sandsofsamplesweresenttoforeignlabsincluding
PublicHealthEngland,accordingto reporting by
the journalist EmmanuelFreudenthal.Beyond
thelackofpatientconsent,thisleftresearchersin
thosecountrieswithoutaccesstothesamplesthat
inmanycasestheythemselvescollected.
Christian Happi, one of Africa’s leading
scientists,was part of the team that sequenced
Ebola duringthe outbreak. The Cameroonian,
nowbasedinNigeria,tellsmeoverthephonethat
theteammadethedatapublicimmediatelysothat
it couldbe used to find treatment.“We were not
reallyinterestedintermsofstoringthesamplesor
keeping the samplesormaking the fancyNature
or Science paper,”hesays.“Andthat’swhat’s
different betweenusthat areonthe ground and
care aboutour people,and those that arecalled
‘parachutescientists’”.
Happigrowsanimatedashedescribes how
Africahas the skills,facilitiesand knowledge to
holdontoitsgeneticendowment.“We havemany,
manycentres of excellence,we have plentyof
peoplewhotrainedinthebestschoolsintheworld
thatarebackonthecontinent.Thereshouldn’t beany room for samplestokeepgoing out of Africa
any more,”hesays.“There’snopoint saying that
youmaintainandkeepallthisinEurope,andany-
timethere’s[acrisis]youparachuteinwithallthe
skillsandallthetoolsandeventuallygoback.That
isnolongeracceptable.
“Weshouldbe collaborating but...you can’tgo
to Americaand then takeDNA samplesout just
anyhow.Youcan’tgotoEuropeandtakeDNAsam-
plesorvirussamplesoutanyhow.Whyshouldthat
bedifferenthere?”
Such questionshave beenponderedinside
H3Africafor years,says JennifferMabuka,head
of the programmeat the AfricanAcademyof
Sciences. “Whatif acommercial company,for
example,camehereandrequesteddataand10,
years down the line were able to makea[block-
buster]drug out of it?” she says.“Howdothe
peoplewhocontributedthatdatabenefit?”
Optionsfor compensationcouldincludefree
accesstodiagnosticservices, discountedaccessto
thedrugs developedfromtheir geneticmaterial,
donationstolocalclinics–or, mostsimplyandfar
morecontroversially, cash.
Manyresearchers contendthat subjects
shouldn’t becompensatedasitcouldcompromise
the science.Italso takes years of analysis before
anyone can tell whetheramutationmeansany-
thing.“TheideathatIwouldlearnsomethingfrom
yourgenomeandthenexploit[it]isactuallypretty
rare,”saysLawrenceBrody, directorofthedivision
of genomicsand society at the NationalHuman
GenomeResearchInstituteatNIH.
Buttheissueiscomplicatedbythewest’shistory
ofplunderinAfrica.Fromdiamondstogold,
oil, bauxite,rareearths and, of course,people
–the continentis rich in resourcesbut has seen
almostno benefit from its bounty.Big Pharma’s
record is no betterthan Big Oil’s. What is to keep
Africa’s greatgeneticdiversityfrombecomingyet
anotherresourcethatisextractedandrefinedinto
multibillion-dollardrugsabroad?F
undingforH3Africawilldryupin
twoyears.Thereisnosignofany
governmentorinstitution ready
to step in, even as its research
is onlybeginning to reveal the
promisethe continent holds.Its
leaders believe theinvestments
they’ve madewill allowAfrican
scientiststobettercompeteforfundingwiththeir
globalpeers.Butthoseresearcherswillalsohaveto
getcreativeabouthowtofundtheirwork.
Sincethe HumanGenomeProject therehas
beenadramaticreduction in the costofsequenc-
ing–from$500m-$1bnintheearly2000s,tounder
$1,000 pergenome today.Thathas made Africa a
moreattractive destinationfor research dollars,
despitebeinghigherriskandlogisticallycomplex.
But the allure of African genomics,bothcommer-
ciallyand scientifically, has elevatedafamiliar
debatethatisparticularlyacuteinacontinentwith
ahistoryofexploitation:profitversuspurpose.
This became apparent in my discussionswith
Happiand,separately, AbasiEne-Obong.Hiscom-
pany,54gene,raised$4.5minventurefundinglast
yeartocreateAfrica’s firstprivatebiobankandhas
justlaunchedaprogrammetosequencetheDNAof
100,000Nigerians.
Both geneticiststrainedatworld-class insti-
tutions (Happiat Harvardand Ene-Obong atthe Universityof London),and both speak about
broadlysimilargoals:to advancescienceby tap-
ping into Africa’s potential,to give back to the
continentand bring Africansinto the genomics
revolution.ButHappi’sapproachsuggestsachoice
must be made betweenprofit and purpose; Ene-
Obongbelievesyoucanhaveitall.
This summer,Happi will open a$4m genom-
icscentreonthecampusofRedeemer’sUniversity
in Nigeria, fundedmainlybythe WorldBank.
The centrewill primarilybearesearch institu-
tion, but it will also offer consulting,sequencing
and trainingcoursesfor academicsand public
healthofficials.“Our goalistoseehowwecanuse
genomicinformationtoactuallyaddressproblems
in Africa...saving lives, makingimpact, without
thinkingabout enriching ourselvesfirst,” he says.
“It’saboutmakingitsustainable.”
Ene-Obong’s officeinLagos still bears the pop-
pingprimarycoloursof54gene’s earlyhistoryasan
AfricanversionofAncestry.com or 23andMe, the
USconsumergeneticsunicorn.Heisabigguywith
agentledispositionwhosmileseasily. Hismission
for54genehassomecrucialdifferencestoHappi’s.
“The question is,are we just building aresearch
toolorisitabusiness?”hesays.“It’sabusiness.But
we wanttobuild abetter referenceset...because
thecurrentleadingreferencesetthatisusedinthe
worlddoesn’tevencontainmytribe.”
He is referringto the 1,000 GenomesProject,
whichfollowedthe HumanGenomeProject and
wasmeanttoaddressthedearthofnon-European
populations.Infact,itincludesneitherhisfather’s
Efiktribenorhismother’s Igbo,ofwhomthereare
morethan30millioninNigeria.
The company’splanned 100,000-Nigerian
database –which it is sourcing from hospitals and
academicinstitutions–issomethingthat phar-
maceuticalcompanieswouldlikelypay heftyfees
to access.AsMatthewNelson,headofgeneticsat
GlaxoSmithKline, tells me: “If Iwas able to access
afull medical historyof 500,000 people across
fivecountriesinAfrica, and analysegeneticdata
from that,that would be afar better investment
in understanding genesand diseasethan another
500,000-personstudyinEurope.”
ButEne-Obongalsowants54genetoworkalong
the drug discovery chain,from contractresearch
for pharmacompaniestoclinicaltrials to poten-
tiallydoing drug discovery themselves. He wants
the companyto be a“precision-medicinepower-
house”sothat it can create targetedtreatments
forAfricans.
“Butthat’sasideeffectofthework,”hetellsme.
“Wewanttobeabletobuildvalue,andthatvalue
could be drugsthat treat people across the world
butwithapreferencealsofordrugsfromdiseases
thataffectAfricansdisproportionately.”
Theplanistopartnerwithpharmacompanies,
research institutions,governmentsand biotech.
“The [sheer]number of companies that have
reachedout –thereisareal interestinstudying
diseasesinthis population,and we just want to
makesurethat it’sall done sustainablyand done
well,”hetoldme,amonthafterthecompanypub-
liclylaunchedlastJuly.
Ene-Obonginsiststhecompanycancontribute
to science,give back to Africa and makeaprofit.
Happiis not convinced. “Whatarewedoing to
ensurethat thereisequity,that thereisfairness,
thatyouhaveproperlycompensatedforthegift–
Imeanitis agift –that theyhavedonated to