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Jansen e al. BMC Medical E hics (2024) 25:25
h ps://doi.o g/10.1186/s12910-024-01012-4 BMC Medical E hics
*Co espondence:
Sammie N. G. Jansen
sammie.jansen@wu .nl
1Cen e o Sus ainabili y, En i onmen and Heal h, Na ional Ins i u e o
Public Heal h and he En i onmen , RIVM, P.O. Box 1, Bil ho en
3720 BA, The Ne he lands
2Depa men o Social Sciences, Wageningen Uni e si y & Resea ch,
Hollandseweg 1, Wageningen 6706 KN, The Ne he lands
3In e na ional Ne wo k on Child en’s Heal h, En i onmen & Sa e y
(INCHES), Ellecom, he Ne he lands
4E hics Ins i u e, U ech Uni e si y, Janske kho 13a, U ech
3512 BL, The Ne he lands
Abs ac
Backg ound Scien i ic and echnological ad ancemen s in mapping and unde s anding he in e ela ed pa hways
h ough which biological and en i onmen al exposu es a ec disease de elopmen c ea e new possibili ies o
de ec ing disease isk ac o s. Ea ly de ec ion o such isk ac o s may help p e en disease onse o mode a e
he disease cou se, he eby dec easing associa ed disease bu den, mo bidi y, and mo ali y. Howe e , he e hical
implica ions o sc eening o disease isk ac o s a e unclea and he cu en li e a u e p o ides a agmen ed and
case-by-case pic u e.
Me hods To iden i y key e hical conside a ions a ising om he ea ly de ec ion o disease isk ac o s, we pe o med
a sys ema ic scoping e iew. The Scopus, Embase, and Philosophe ’s Index da abases we e sea ched o pee -
e iewed, academic eco ds, which we e included i hey we e w i en in English o Du ch and conce ned he e hics
o (1) ea ly de ec ion o (2) disease isk ac o s o (3) disease caused by en i onmen al ac o s o gene-en i onmen
in e ac ions. All eco ds we e e iewed independen ly by a leas wo esea che s.
Resul s A e sc eening 2034 i les and abs ac s, and 112 ull pape s, 55 a icles we e included in he hema ic
syn hesis o he esul s. We iden i ied eigh common e hical hemes: (1) Reliabili y and unce ain y in ea ly de ec ion,
(2) au onomy, (3) p i acy, (4) bene icence and non-male icence, (5) downs eam bu dens on o he s, (6) esponsibili y,
(7) jus ice, and (8) medicaliza ion and concep ual dis up ion. We iden i ied se e al gaps in he li e a u e, including a
ela i e sca ci y o esea ch on e hical conside a ions associa ed wi h en i onmen al p e en i e heal h in e en ions, a
dea h o p ac ical sugges ions on how o add ess exp essed conce ns abou o e es ima ing heal h capaci ies, and a
lack o insigh s in o p e en ing undue a ibu ion o heal h esponsibili y o indi iduals.
Conclusions The e hical conce ns a ising wi h he ea ly de ec ion o isk ac o s a e o en in e ela ed and complex.
Comp ehensi e e hical analyses a e needed ha a e be e embedded in no ma i e amewo ks and also assess
and weigh he expec ed bene i s o ea ly isk ac o de ec ion. Such esea ch is necessa y o de eloping and
implemen ing esponsible and ai p e en i e heal h policies.
Keywo ds Ea ly de ec ion, Sc eening, Risk ac o s, P e en ion, E hics, Scoping e iew, En i onmen al heal h, Public
heal h
E hics o ea ly de ec ion o disease isk ac o s:
A scoping e iew
Sammie N. G.Jansen1,2*, Ba A.Kampho s 2, Bob C.Mulde 2, I ene anKamp1, Sand aBoekhold1,
Pe e an denHazel3 and Ma cel F.Ve weij4
Page 2 o 16Jansen e al. BMC Medical E hics (2024) 25:25
Backg ound
Ea ly de ec ion o disease isk ac o s con ibu es o iden-
i ying pa hways o p e en disease onse o mode a e
disease cou se and he eby dec ease associa ed disease
bu den, mo bidi y, and mo ali y [1, 2]. Making disease
p edic ions based on ea ly isk ac o s has p o en no o-
iously di icul since mos diseases de elop h ough a
complex in e play be ween an indi idual’s suscep ibil-
i y o p edisposi ion o a ce ain disease o diso de and
speci ic en i onmen al exposu es o e ime [3, 4]. New
esea ch is pushing he bounda ies o unde s anding
he pa hways and mechanisms by which a ious ac o s
in e ac by u ilizing ecen ad ances in compu a ional
and biomedical sciences ha allow o measu ing, mod-
elling, and analyzing inc easingly la ge clus e s o en i-
onmen al ac o s and linking hese o disease ou comes.
Ini ia i es o map he human exposome, i.e. “e e y expo-
su e o which an indi idual is subjec ed om concep ion
o dea h” [5], aim o unco e new (clus e s o ) isk ac-
o s and co esponding pa hways o disease. An exam-
ple is he Equal-Li e p ojec ha s udies he long- e m
e ec s o physical and psychosocial isk ac o s on chil-
d en’s men al heal h and cogni i e de elopmen [6]. One
majo p ac ical aim o such ini ia i es is o enable and
s eng hen p e en i e s a egies by imp o ing he p eci-
sion and accu acy o de ec ing ea ly isk ac o s and iden-
i ying (g oups o ) people a isk o u u e disease.
The po en ial bene i s o a oiding disease onse and
co esponding disease bu den may be signi ican . How-
e e , p e en ion o disease by ea ly de ec ion o isk
ac o s also aises e hical conce ns. Fo example, alse
posi i e esul s can lead o unnecessa y medical ea -
men (e.g. biopsies), and, de ec ion echniques can hem-
sel es in ol e isks, as is he case wi h, e.g., colonoscopies
[7]. Mo eo e , he me e o e ing o medical p e en i e
in e en ions can bu den people wi h wo ies and unce -
ain ies abou hei heal h [8]. And labeling en i onmen s
such as neighbo hoods as ‘high- isk’ can ha e s igma iz-
ing e ec s ha may, o example, a ec school ca ee s [9,
10]. E en o many p e en i e ac ions ha ha e an ob i-
ous posi i e impac on public heal h, such as accina ion,
only small bene i is expec ed o each pa icipa ing indi-
idual as mos o he pa icipan s would ne e de elop
he disease o se e e complica ions in hei li e ime [11].1
Ea ly de ec ion o disease isk ac o s likewise in okes
e hical conce ns. Howe e , he cu en li e a u e on his
subjec p o ides a agmen ed and case-by-case pic u e,
and no sys ema ic e o s ha e been aken o cap u e
he o e a ching e hical conside a ions o ea ly de ec ion
o disease isk [12–15]. To imp o e his si ua ion, he
1 This is also known as he P e en ion Pa adox: “a measu e ha b ings la ge
bene i s o he communi y o e s li le o each pa icipa ing indi idual.”
(Rose, 1981, p. 1850).
p esen pape p esen s a scoping e iew conduc ed wi h
he dual aim o (1) p o iding an o e iew o he ele an
e hical hemes ela ed o he ea ly de ec ion o disease
isk ac o s, and (2) iden i ying po en ial gaps in he li -
e a u e. The scoping e iew me hod allows o add essing
a b oad esea ch ques ion and including li e a u e om
di e en s udy domains and designs. In addi ion, he
scoping e iew me hodology allows o he b oad map-
ping and hema ically syn hesizing o in o ma ion, a he
han solely summa izing he esul s [16], which makes i
sui able o ou aims.
This scoping e iew esul s in a summa y o he cha -
ac e is ics o he included s udies and an o e iew o
common e hical hemes as discussed in he li e a u e,
ollowed by a discussion o gaps in he li e a u e. These
esul s aim o guide u u e ini ia i es in o de ec ing ea ly
isk ac o s and migh hus be use ul o e hicis s, heal h
p ac i ione s and policymake s wo king in p e en i e
medicine.
Me hods
A scoping e iew o he e hics li e a u e was pe o med
acco ding o A ksey & O’Malley’s me hodological ame-
wo k [16], using he upda e by Le ac e al. [17]. This
e iew amewo k includes i e main s ages ha a e
desc ibed below. Fu he mo e, he PRISMA-ScR guide-
lines es ablished by T icco e al. [18] and he PAGER
epo ing guidelines by B adbu y-Jones e al. we e con-
sul ed [19].
Iden i ying he esea ch ques ion
The aim o his s udy was o analyze he e hics li e a u e
on ea ly de ec ion o disease isk ac o s, and o de ine
p ominen e hical hemes. Ou assump ion was ha
iden i ying such e hical hemes could guide new de el-
opmen s in p e en ion such as exposome esea ch and
policies.
Iden i ying ele an s udies
Be o e conduc ing he sys ema ic sea ches, Google
Schola was used o ga he in o ma ion o de e min-
ing he app op ia e scope, sea ch e ms, and easibil-
i y o he sea ch s a egy. Two sea ches we e conduc ed,
in Scopus and Embase. Scopus was chosen o i s wide
ange o li e a u e in a wide ange o domains. Embase
was chosen o i s comp ehensi e co e age o biomedi-
cal li e a u e. These sea ches we e pe o med on Ap il
5, 2022. A hi d sea ch in he Philosophe ’s Index was
pe o med o he same ime pe iod in Decembe 2023.
Philosophe ’s Index was chosen o i s disciplina y ocus
on philosophy and e hics li e a u e. Keywo ds ela ed o
he domain o ea ly de ec ion (e.g. “Ea ly de ec ion” OR
“P eclinical de ec ion” OR “P edic *”) we e combined
wi h keywo ds ela ing o isk ac o s (e.g. “Risk ac o ”
Page 3 o 16Jansen e al. BMC Medical E hics (2024) 25:25
OR “P o ec i e ac o ” OR “De e minan ”) o he domain
o exposome (e.g. “Exposom*” OR “Mul i-expos*” OR
“*omic”) and combined wi h he gene al domain o e hics
(“e hic*”). Fo he ull sea ch s a egy, see he supplemen-
a y ma e ials.
S udy selec ion
A icles we e included i hey (1)discussed e hics o ea ly
de ec ion o disease isks, (2)conce ned human heal h,
(3)we e pee - e iewed and published in academic jou -
nals, (4)we e w i en in English o Du ch. A icles we e
excluded i hey (1)discussed a disease isk ha is solely
gene ic (no en i onmen al componen ), (2) p ima ily
discussed de ec ion o clinical symp oms o p edic ing
ea men esponse ( a he han discussing isk ac o s
ha could lead o he de elopmen o disease). Al hough
ou ocus was on ea ly de ec ion o disease isks, pape s
discussing de ec ion o p esymp oma ic disease we e also
included gi en ha he dis inc ion is no clea cu . Fi s ,
wo e iewe s (SJ and IVK) sc eened all a icles o mee -
ing he inclusion and exclusion c i e ia based on i les
and abs ac s. All a icles we e independen ly (blindly)
e iewed; con lic s we e esol ed by a hi d e iewe
(BK). The emaining a icles we e sc eened based on he
ull ex s and independen ly e iewed o mee ing he c i-
e ia by a leas wo e iewe s (SJ, BK, and BM). Con lic s
we e esol ed by delibe a ion be ween he h ee e iew-
e s. Finally, he e e ence lis s o he included a icles
we e consul ed o addi ional li e a u e.
Cha ing he da a
Fo all ele an a icles, in o ma ion was ex ac ed by wo
au ho s independen ly om each o he (SJ all a icles, BK
and BM bo h hal o he a icles). The ollowing in o ma-
ion ela ing o he ype o a icle was ex ac ed using a
sp eadshee : he aim o he a icle, he me hod (empi ical
o non-empi ical), he discussed ype o isk ac o and
measu emen me hod, a ge popula ion, con ex (e.g.
clinical p ac ice, public heal h, occupa ional se ing), he
disease, and he ac ion pe spec i e o de ec ing he isk
ac o (e.g. ea men o o he in e en ion a ailable). Fo
all ele an a icles he e hical issues ha we e discussed
subs an ially we e ex ac ed and ca ego ized in o ei he a
class o issues ela ed o he indi idual o amilial sphe e
(e.g. pa ien in o med consen and he du y o sha e ele-
an es esul s wi h amily membe s), o a class o issues
ela ing o a b oade popula ion o socie al le el (e.g. he
issue o medicaliza ion). E hical issues ha we e men-
ioned bu no u he elabo a ed o analyzed we e no ed
in a sepa a e column.
Colla ing, summa izing, and epo ing he esul s
We p esen ou esul s in a hema ic na a i e o m
[16], suppo ed by an o e iew o he main hemes and
sub hemes in Table1, and he main hemes pe a icle in
Table2. Fo he desc ip i e analysis, in o ma ion abou
he coun y o he i s au ho , da e o publica ion, he
discussed heal h domain, he b oade con ex o he ea ly
de ec ion o isk ac o s, and he me hods we e cap u ed.
Fo he hema ic analysis, a con en ional con en analy-
sis app oach was used [20]. The desc ip i e e hical issues
ex ac ed om he included a icles we e induc i ely
coded by SJ. Recu en coding pa e ns we e iden i ied
and g ouped in o hemes and sub hemes. In an i e a-
i e p ocess, he codes and de eloping (sub) hemes we e
discussed by he h ee au ho s un il concep ual s abili y
was eached o he hemes. Al hough he iden i ied (sub)
hemes p esumably ha e dis inc impo ance and appli-
ca ions o di e en diseases and in speci ic si ua ions,
he aim was o ca ego ize he mos discussed issues and
iden i y he b oade e hical hemes ha a ise ou o he
compa ison o hese issues. Finally, om he iden i ied
hemes, li e a u e gaps we e iden i ied.
Resul s
Desc ip i e analy ics
The sea ches esul ed in N = 1201 a icles om Scopus,
N = 1121 a icles om Embase, and N = 118 a icles om
Philosophe ’s Index. Addi ionally, p omising a icles
iden i ied in he e iew’s p epa a ional phase we e added
(N = 37). A e emo al o duplica es, N = 2034 a icles
we e included o sc eening based on i le and abs ac .
Abs ac and i le sc eening esul ed in N = 112 a icles
ha we e ound eligible o ull- ex e iewing. Full- ex
sc eening esul ed in N = 48 a icles ul illing he c i e ia.
Following he sea ches, we ound u he ele an a icles
(N = 7) by consul ing he ele an a icles’ e e ences lis s.
A inal sample o N = 55 was included in he analysis. See
Fig.1.
The included a icles we e published by au ho s in
Eu ope (N = 31), he Uni ed S a es and Canada (N = 21),
and Aus alia (N = 3). The a icles we e published
be ween 1990 and 2021, wi h a peak be ween 2015 and
2019 (N = 18). A la ge pa o he a icles discussed he
e hics o ea ly de ec ion o isk ac o s wi hou ocus-
ing on a pa icula disease (N = 20) and many had a ocus
on men al heal h and neu ological diseases (N = 25), ol-
lowed by cance s (N = 8), nu i ion (N = 2), and i al in ec-
ion (N = 1). The a icles discussed ea ly de ec ion o isk
ac o s in he con ex o public heal h (N = 18), clinical
heal h (N = 10), bo h public and clinical heal h (N = 15),
occupa ional (N = 8) and o ensic se ings (N = 4). The
majo i y o he included a icles u ilized me hods com-
mon in applied e hics, including concep ual analysis and
c i ical e lec ion on and engagemen wi h he empi i-
cal li e a u e, ins ead o conduc ing empi ical esea ch.
The a icles using empi ical me hods (N = 5) made use o
Page 4 o 16Jansen e al. BMC Medical E hics (2024) 25:25
ocus g oup discussions [21, 22], in e iews [23], e hno-
g aphic ieldwo k [24], and expe wo kshops [14].
Analysis o he included a icles iden i ied eigh com-
mon e hical hemes: (1) Reliabili y and unce ain y in
ea ly de ec ion, (2) Au onomy, (3) P i acy, (4) Bene i-
cence and Non-male icence, (5) Downs eam bu dens
on o he s, (6) Responsibili y, (7) Jus ice, (8) Medicaliza-
ion and concep ual dis up ion. Fo an o e iew o hese
hemes and he co e ed sub hemes, see Table 1. The
hemes a e in many ways in e connec ed, bu o he sake
o cla i y will be discussed sepa a ely below. See Table2
o he pa e ning cha o he main hemes.
Reliabili y and unce ain y in ea ly de ec ion
Reliabili y and unce ain y o ea ly isk in o ma ion
a e equen ly discussed as impo an e hical conside -
a ions o de ec ing ea ly disease isk ac o s [see Table2,
column Reliabili y and unce ain y]. The e icacy and
accu acy o de ec ing he isk ha is in es iga ed a e, o
example, o en discussed. Whe e diagnos ic es s p o ide
bina y ou comes (a disease is p esen o no p esen ), he
ac o s de ec ed wi h me hods o de e mine and p edic
disease isk p o ide p obabilis ic ou comes om 0 o
100% isk o he disease o de elop, whe e he low and
high ex emes a e e y a e o mos diseases as many
biological and en i onmen al ac o s a ec he isk sco e
[4, 15, 25].
In isk sc eening es s, eliabili y and unce ain y a e
o en discussed in e ms o alidi y, i.e. sensi i i y and
speci ici y, o he es [26, 27]. Sensi i i y e e s o he
chance ha he es e u ns a posi i e esul in people
ha a e a isk ( ue posi i e a e) whe eas speci ici y
e e s o a nega i e esul in people ha a e no a isk
( ue nega i e a e). Tes s wi h a low alidi y, he e o e,
Fig. 1 P e e ed Repo ing I ems o Sys ema ic Re iew and Me a-Analysis (PRISMA) lowcha o a icle sc eening phases
Page 5 o 16Jansen e al. BMC Medical E hics (2024) 25:25
e u n mo e alse-posi i e and alse-nega i e esul s.
The p edic i e alue o a es also depends on he dis-
ease p e alence in he a ge popula ion. Fo example,
i he p e alence o a isk ac o is e y low, e en a es
wi h high sensi i i y and speci ici y will ha e a low posi-
i e p edic i e alue. Fu he mo e, he analy ical alid-
i y o he es does no necessa ily mean clinical alidi y
and u ili y, i.e. how well he es co ela es wi h clinical
esponses and ea men s [21]. Depending on hese la -
e wo, he numbe o a - isk people ha need o be co -
ec ly de ec ed and ea ed o p e en one pe son om
de eloping he disease (“numbe needed o ea ”) a ies
o di e en diseases and de ec ion me hods [28].
As p e en i e medicine is u ning owa ds de ec ing
and p e en ing mo e complex, mul i ac o ial diseases,
au ho s2 wa n ha he p edic i e alue and eliabili y o
he de ec ion me hods need o be ca e ully moni o ed
and balanced agains o he aspec s such as he cos -
e ec i eness and ac ionabili y o he isk in o ma ion
(see he sec ions on, espec i ely, jus ice and bene icence
& non-male icence). Fu he mo e, non-gene ic isk ac-
o s, including epigene ic ac o s [21, 29, 30], can change
o e ime and in e ac ions wi h di e en en i onmen al
2 Th oughou he manusc ip , he e m “au ho s” always e e s o he au ho s
o included a icles discussed in ha pa ag aph.
ac o s and condi ions can p oduce di e en ou comes.
This inc eases he unce ain y associa ed wi h isk p e-
dic ions [4, 25, 27, 31, 32], bu also p o ides oppo uni ies
o p e en i e in e en ions o dec ease isk disposi ions
and modi y he disease cou se [43].
Ea ly de ec ion o disease isk ac o s can be a ec ed
by, and play in o, a ious biases ha dec ease he eliabil-
i y o es esul s and inc ease unce ain y in isk p edic-
ions. F equen ly men ioned is he way in which selec ion
bias in he de elopmen and alida ion phases o de ec-
ion me hods (e.g., due o non- ep esen a i e s udy
samples) can limi he gene alizabili y o hese de ec ion
me hods [33, 34]. In he o he di ec ion, he abili y o
de ec isk ac o s and abno mali ies in inc easingly ea ly
phases can play in o lead- ime bias (whe e ea lie de ec-
ion leads o a mis aken sense o inc eased su i al ime),
leng h bias (whe e he e ec i eness o a es is o e es i-
ma ed because i o e -iden i ies slow-de eloping, less
agg essi e diseases), and o e diagnosis bias (whe e many
people a e iden i ied as high isk o a disease ha will
ne e de elop du ing hei li e ime [35]). (Fo o e diag-
nosis, also see he sec ion on medicaliza ion and concep-
ual dis up ion.)
To o e come po en ial biases and imp o e he p edic-
i e alue and eliabili y o ea ly sc eenings he use o big
da a app oaches is some imes p oposed as a solu ion.
Howe e , au ho s wa n ha “i is no always he case ha
mo e da a will lead o be e p edic i e models” [28, p.
124] as i can also inc ease he complexi y and deg ee o
unce ain y by inc easing he a iance o he esul s (and
he eby causing loss o p ecision). Mo eo e , i does no
necessa ily sol e o he issues discussed in his sec ion o
he hema ic sec ions below [24, 36, 37].
Au onomy
A commonly men ioned se o issues cen e s a ound
he no ion o pe sonal au onomy [see Table2, column
Au onomy], which we unde s and he e in he b oad
sense o being able o “lead one’s li e in a way ha acco ds
wi h wha one genuinely ca es abou ” [38, p. 5]. In he
su eyed pape s, au onomy conside a ions abou ha -
ing he capaci ies and oppo uni ies o make one’s own
choices a e mos ly discussed in he con ex o in o med
consen . The e is b oad consensus among au ho s ha
in o med consen should con ain in o ma ion abou he
expec ed bene i s and possible medical and psychosocial
isks [39], abou who can use and access he da a (e.g.
seconda y uses by hi d pa ies [40]), and abou he pos-
sibili y o inciden al indings ha may be sensi i e as hey
migh un eil en i onmen al and li es yle exposu es [21].
The ex ensi e and complex na u e o he in o ma ion
equi ed o uly in o med consen , howe e , equi es a
le el o heal h li e acy ha o many indi iduals may no
be a ainable [23]. Fo example, wo ies a e exp essed
Table 1 Key e hical hemes and sub hemes o he ea ly
de ec ion o disease isk ac o s
Main hemes Sub hemes
Reliabili y and
unce ain y in ea ly
de ec ion
Validi y, sensi i i y, and speci ici y o he de ec-
ion me hods
P edic i e alue and eliabili y o he de ec ion
me hods
Da a biases
The complexi y o big da a
Au onomy In o med consen
Heal h compe encies
Empowe men and esponsibili y o heal h
P i acy Da a p o ec ion
Con iden iali y
Bene icence and
non-male icence
Ha m ul psychological e ec s
False-posi i e and alse-nega i e esul s
Ac ionabili y o es esul s
Beha io and li es yle change
Risk communica ion
Downs eam bu -
dens on o he s
Changing pe cep ions o “a - isk indi iduals”
Di ec and indi ec implica ions o amily and
signi ican o he s
Responsibili y Indi idual esponsibili ies o heal h
Collec i e and socie al esponsibili ies o heal h
Jus ice S igma iza ion and disc imina ion
Heal h inequi ies
Equi able and e icien use o inancial esou ces
Medicaliza ion
and concep ual
dis up ion
Reconcep ualiza ion o heal h and disease
O e diagnosis and o e ea men
Page 6 o 16Jansen e al. BMC Medical E hics (2024) 25:25
Themes in he E hics o Ea ly De ec ion o Disease Risk Fac o s
Pape ID Reliabili y &
unce ain y
Au onomy P i acy Bene icence &
non-male icence
Down-
s eam
ha ms o
o he s
Responsibili y Jus ice Medical-
iza ion &
concep ual
dis up ion
Ahlg im e al. 2019 x x x x x x
Almond 2006 x x x x x x x
Bol e al. 2021 x x x x x
Bunnik & Bol 2021 x x x x x x
CalzÃe al., 2015 x x x x
Chowdhu y e al. 2013 x x x x x
Ch is iani e al. 2001 x x x x x
Co co an e al. 2005 x x x x x x
DeCamp & Suga man
2004
x x x x x
Dhond 2010 x x x x x x
F ank 1996 x x
F ank 2001 x x x x x
Ge shon & Alliey-Rod i-
guez 2013
x x x x x x
Glenn 2019 x x x x x
G een & Hille sdal 2021 x x x x x
G een & Vog 2016 x x x x x x x
Hall e al. 2014 x x x x x x x
Hall e al. 2004 x x x x
Hall e al. 2008 x x x x x
Hoge & Appelbaum 2012 x x x x x x x
Holzman 1996 x x x x
Ho s kö e e al., 2021 x x x x
Hu limann e al. 2017 x x x x x
Illes e al. 2007 x x x x x x x
Jenkins e al. 2008 x x x x
Ju jako e al. 2019 x x x x x x
Law ie e al. 2019 x x x x x
Lewis 2018 x x x x
Meage e al. 2017 x x x x x x
McKeown e al. 2021 x x x x x x
Paul e al. 2014 x x x x x x
Plu ynski 2012 x x x x x x
P ainsack 2019 x x x x x
P ess e al. 2000 x x x
Qua occhi e al. 2019 x x x
Rawbone 1999 x x x x x
Robe s e al. 2013 x x x
Salamanca-Buen ello e
al. 2020
x x x x
Sche me & Richa d 2019 x x x x
Schick anz e al. 2014 x x x x x x x
Singh & Rose 2009 x x x x x x
Specke & Sche me
2021
x x x x
Specke & Sche me
2017
x x x x x
Sp iggs e al. 2008 x x x x x x
S ol e al. 2016 x x x x x x
Table 2 Key e hical hemes and pa e ning cha
Page 7 o 16Jansen e al. BMC Medical E hics (2024) 25:25
ha complex heal h in o ma ion can o e whelm people
and comp omise hei capaci y o au onomous decision
making [41], ha i is di icul o many people o unde -
s and he di e ence be ween absolu e and ela i e isk
[35], and ha people migh ha e un ealis ic ideas abou
he explana o y powe o ea ly disease isk ac o s [42].
Conce ns abou (lack o ) heal h- ela ed compe en-
cies a e especially p ominen in he su eyed li e a u e.
Dilemmas can a ise when ea ly de ec ion akes place
ea ly in li e and consen had o be gi en by legal p oxies
(pa en s o legal gua dians). One issue he e is ha p e-
en i e es ing in child en migh dep i e hem o hei
‘ igh no o know’, in which case i could be p e e able
o pos pone es ing un il he young pe son has de el-
oped su icien compe ency o make hei own decision.
Howe e , wai ing can also dep i e he same pe son o
he oppo uni y o make choices ha can a ec hei
disease isk, o comp omise hei heal h and po en ially
he de elopmen o necessa y compe encies by allowing
he disease o de elop [13, 15, 30, 39, 43–45]. Compe en-
cies o in o med consen in adul s is mos ly discussed
o indi iduals a isk o men al heal h diso de s [39, 46].
De eloping men al disease symp oms can inc easingly
comp omise he equi ed compe encies such ha “a ully
compe en and au onomous pa ien a he beginning o a
s udy may p og ess o a poin o diminished capaci y and
au onomy” [12, p. 7].
Ano he sub heme ela ed o au onomy ha se e al
au ho s c i ically discuss is empowe men , in pa icu-
la he idea ha ea ly de ec ion can empowe people o
ake con ol o hei heal h and o plan hei u u e. I
is also discussed ha he e is a isk ha he unde lying
assump ion is ha indi iduals “can (and should) be held
mo ally esponsible o hei heal h ou comes” [47, p.
77]. As social and mo al no ms p omo ing esponsibil-
i y o heal h can pu p essu e on indi iduals and g oups
o con o m, se e al au ho s wo y ha he na a i e o
empowe men migh comp omise he olun a iness
o he decision o ake an ea ly de ec ion es [28, 29,
48–51], as well as downs eam decisions abou li es yle
choices [32].
P i acy
Ea ly de ec ion o heal h- ela ed isks gene a es sensi-
i e in o ma ion abou a pe son’s suscep ibili y o a a i-
e y o diseases [see Table2, column P i acy]. Mo eo e ,
he in o ma ion ha is collec ed in he se ice o such an
assessmen can po en ially con ain indica o s o a pe -
son’s (pas ) li es yle and en i onmen al exposu es ha
also wa an p o ec ion (e.g. ia epigene ic changes) [4,
21, 29]. The e o e, con iden iali y o es s and esul s is
conside ed an impo an componen o p o ec ing sen-
si i e da a and p ese ing indi idual p i acy, bu ensu -
ing con iden iali y becomes inc easingly di icul when
a b oad ange o da a is collec ed and possibly sha ed
o linked o o he (public) da a sou ces [4, 21]. Linking
da ase s inc eases he isk o iden i ica ion o indi idu-
als in he da ase s [4, 14, 21, 22]. Pooling o agg ega ing
da a be o e sha ing educes he isk o iden i ica ion, bu
also dec eases he ichness o he da ase and i s (clinical)
u ili y [15].
Fo he in o med consen p ocedu e (also see he sec-
ion Au onomy), cla i y abou indi idual p i acy, da a
con iden iali y, and da a s o ing and sha ing a e e-
quen ly men ioned [13, 21, 33, 42, 44, 52, 53]. As indi-
iduals migh wo y abou ( u u e) disclosu e o hei isk
in o ma ion, in o ma ion abou po en ial isks o p i acy
and how ins i u ions deal wi h po en ial p i acy b eaches
a e impo an o alid in o med consen . A lack o con-
iden iali y, o a lack o us in con iden iali y, migh lead
o people no pa icipa ing in ea ly de ec ion e o s ha
can bene i hem [54, 55]. Legisla ion o p o ec sensi i e
pe sonal in o ma ion can p o ide eassu ance [33].
Themes in he E hics o Ea ly De ec ion o Disease Risk Fac o s
Pape ID Reliabili y &
unce ain y
Au onomy P i acy Bene icence &
non-male icence
Down-
s eam
ha ms o
o he s
Responsibili y Jus ice Medical-
iza ion &
concep ual
dis up ion
S ol e al. 2017 x x x x x x
S ol e al. 2018 x x x x x x
S ensson & Sandlund
1990
x x x x
Tabe y 2009 x x x x
Thomas 2015 x x x x
T omp e al., 2021 x x
Van Damme e al. 1995 x x x x x x
Vineis 1997 x x x x x
Vineis & Schul e 1995 x x x x x
Vog e al. 2019 x x x x
Table 2 (con inued)
Page 8 o 16Jansen e al. BMC Medical E hics (2024) 25:25
Some au ho s hold ha con iden iali y migh be igh -
ully b eached in ce ain cases, such as when pa en s
a e ac ing as a p oxy o hei child [15] o when he isk
in o ma ion is ele an o o he s as well, such as ( u u e)
ca e ake s and amily membe s who po en ially ca y
he same isk ac o s. Howe e , hesi ance was obse ed
in he li e a u e wi h espec o assigning a mo al du y o
physicians o a - isk indi iduals o sha e a isk s a us wi h
ele an o he s as his would ha m hei igh o au on-
omy [44, 45, 52].
B oad consensus was obse ed abou he impo ance
o p o ec ing p i acy and con iden iali y agains hi d
pa ies such as insu e s and employe s. Wo ies exis ha
hi d pa ies can misuse isk in o ma ion o disc imina e
o s igma ize indi iduals who ha e been labeled as being
high isk o disease [13, 27, 30, 35, 43, 48, 56, 57]. (See
also he sec ion on Jus ice.)
Bene icence and non-male icence
In heal hca e, he p inciples o bene icence (“do as much
good as possible”) and non-male icence (“do no ha m
beyond wha is p opo iona e”) a e impo an mo al
guiding p inciples [58] o s iking a posi i e balance
be ween an in e en ion’s bene i s and in lic ed ha ms
o he indi idual. While he p inciples hemsel es a e
men ioned ela i ely in equen ly in he su eyed li e a-
u e (bu see [27, 35, 40]), hey a e implici ly p esen in
he backg ound o many discussions abou he po en ial
bene i s and ha ms o he ea ly de ec ion o disease isks
[see Table 2, column Bene icence & non-male icence].
Fo example, mul iple au ho s a gue ha he ‘la en
pe iod’ be ween de ec ing a isk and po en ial disease
occu ence can also be a pe iod o unce ain y and anxi-
e y. They ques ion whe he ea ly knowledge abou being
a heigh ened isk is mo e bene icial o an indi idual han
spending he in e im ime in ‘no malcy’, especially when
no p e en i e ac ions a e cu en ly a ailable [13, 32, 39].
Mos discussed a e he ways in which a high- isk clas-
si ica ion may lead o wo ies and anxie ies o de el-
oping disease [2, 13, 22, 23, 28, 32, 44–48, 59] and can
ha e nega i e e ec s on sel -image [22, 31, 32, 45, 46].
Au ho s no e ha he e ec s on sel -image migh lead o
dep ession [33] and e en suicide [12, 46], al hough hese
e ec s a e gene ally conside ed a e [49]. Ano he pos-
sible ha m ul psychological e ec migh be ha posi-
i e es esul s lead o a pe cei ed lack o con ol and
dec eased mo i a ion o a u u e ha “ h ea ens o be
aken away by illness”, possibly in luencing impo an
li e decisions such as amily planning [39, p. 6]. Knowing
one is a g ea e isk o disease can also cause eelings o
being agile o ‘de ec ed’ [4, 39, 54]. Such knowledge can
also con ibu e o a sel - ul illing p ophecy [12, 15, 31,
60] when he (an icipa ed) isk s a us leads o s ess and
anxie ies ha subsequen ly a ec s cogni i e unc ioning
[12], which in u n p omo es isk-inc easing beha io s
[15].
Ha m ul impac s o ea ly de ec ion o disease isk ac-
o s a e especially p oblema ic and unjus i ied when
esul s a e inco ec . Au ho s wa n ha alse-posi i e
esul s can lead o unnecessa y labeling and in e en-
ions [15, 27, 28, 39, 41, 44, 60]. Likewise, alse-nega i e
esul s can dep i e pa ien s om bene icial ea ly in e -
en ions and p o oke unjus i ied eelings o secu i y [27,
28, 47, 60], possibly leading o he neglec o ea ly symp-
oms (“They said e e y hing was okey”) [2, p. 278]. (Also
see he sec ion Reliabili y and unce ain y). Ad ances in
esea ch me hods, howe e , p omise o inc ease he p e-
cision o sc eening es s and he eby dec ease mis-ca e-
go iza ions [61].
In sho , i is no always bene icial o indi iduals o
pa icipa e in ea ly de ec ion p og ams and unde go
(some imes unnecessa y) ollow-up examina ions and
in e en ions [35]. Though anspa ency and u h elling
by disclosing es esul s and possible inciden al indings
a e alued as p o iding espec o au onomy, consen-
sus wi hin he medical communi y is a p esen agains
disclosu e o isk in o ma ion wi h unce ain p edic i e
alue, jus i ied by he p inciple o non-male icence [39,
49].
Many au ho s acknowledge ha i ea ly knowledge is o
be bene icial o indi iduals, he sc eening esul s should
be ‘ac ionable,’ in he sense ha hey p esen ( iable)
op ions open o indi iduals o change hei si ua ion and
heal h p ospec s. The exis ence o an “e ec i e in e en-
ion o p e en he diso de in hose who a e iden i ied
as being a isk” is e en iden i ied by some as a p e eq-
uisi e o he e hical accep abili y o ea ly sc eening es s
[57, p. 352], especially when i conce ns child en who
canno ye decide o hemsel es [45]. Apa om ea ly
in e en ions o ully p e en disease occu ence se e al
o he p e en i e ac ions a e men ioned ha can be con-
side ed impo an o bene icence, including p o iding
eassu ance when a es is nega i e [14, 15, 46, 49], o e -
ing suppo in planning one’s li e o a u u e disease [45,
46], suppo ing ep oduc i e decisions [32, 41, 43, 62,
63], and gi ing ad ice on modi ying heal h beha io s and
li es yle [15, 32, 41, 47, 51, 64].
P omo ing heal hy li es yles and heal h-posi i e beha -
io s a e men ioned in pa icula as impo an in e en-
ions o mi iga e disease isk and suppo bene icence
[12, 29, 32, 51, 59]. The assump ion ha indi iduals
can and will success ully implemen he p o ided li e-
s yle and heal h beha io ad ice is, howe e , ques ioned
and c i icized by se e al au ho s. Social science s udies
indica e ha changing heal h beha io s is di icul [28]
and he lack o di ec expe ience o symp oms, unce -
ain y abou whe he symp oms will ma e ialize, and
Page 9 o 16Jansen e al. BMC Medical E hics (2024) 25:25
unce ain y abou he e ec i eness o changing li es yle
a e men ioned as possible demo i a ing ac o s [2]. The
ha m ul psychological e ec s discussed abo e can also
be ba ie s o e ec i e beha io change [2, 4]. E en when
isk in o ma ion e ec i ely mo i a es some indi iduals
o change heal h beha io s, i should no be assumed o
mo i a e a pa icula indi idual [43]. O he ba ie s o
adop ing heal hy li es yles ha a e men ioned a e low
heal h li e acy, low socio-economic s a us, and es ic ed
access o heal hca e. The implica ions o hese inequali-
ies be ween indi iduals and social g oups a e discussed
in he heme on Jus ice.
To achie e he p oposed bene i s and minimize he
ha ms, adequa e communica ion abou isks is discussed
as c ucial. Pa icipan s o p e en i e in e en ions should
be in o med abou , among o he hings, he expec ed
bene i s and ha ms and he ac ionabili y o he isk in o -
ma ion (also see he sec ion on in o med consen wi hin
he heme Au onomy). I may be di icul , howe e , o
bo h p o essionals and laype sons o adequa ely g asp
he di e ence be ween suscep ibili y and disease, and o
unde s and p obabilis ic and ela i e isk da a [35, 39,
43, 50, 59]. Some au ho s ecommend a oiding complex
medical e minology and con ex ualizing he p o ided
in o ma ion in ela ion o he pa ien ’s si ua ion [12, 53].
Misin e p e a ion o es esul s and unsubs an ia ed
expec a ions o he explana o y powe and ac ionabili y
o he in o ma ion ( he apeu ic misconcep ion) a e widely
discussed as ha m ul implica ions o inadequa e com-
munica ion o isk in o ma ion [12, 42, 46, 47, 49, 59, 63].
An example by Sche me & Richa d [53, p. 143] is ha
“ he emo ional and social e ec s o e ms chosen o com-
munica e wi h lay-people can be conside able; being old
one is ‘a isk’ o de eloping AD [Alzheime ’s disease] is
di e en om being old one has p eclinical o asymp-
oma ic AD – al hough he si ua ions hese e ms aim
o desc ibe may be exac ly he same”. Educa ing pa ien s
using simple suppo aids [45], o e ing counseling [39,
43], and aining heal hca e p o essionals in pa ien com-
munica ion a e discussed as bene i ing isk communica-
ion [44, 49].
Downs eam bu dens on o he s
Besides he ha ms and bene i s o ea ly isk ac o de ec-
ion o he indi iduals who consen o sc eening p o-
cedu es, au ho s equen ly men ion he downs eam
e ec s ha sc eening pa icipa ion may ha e o , and
in ela ion o, iends and amily [see Table2, column
Downs eam bu dens on o he s]. Though hese down-
s eam e ec s o a ce ain ex en ela e o he bioe hical
p inciples o bene icence and non-male icence as well
(e.g., conside he social ha ms ha may be all indi idu-
als h ough s igma iza ion; see also Jus ice), we discuss
hem sepa a ely because hey also ela e o b oade
e hical ques ions abou how o s ike a balance be ween
di e ging in e es s o mul iple indi iduals.
In his con ex , au ho s men ion ha amily and o he s
a ound “a - isk indi iduals” migh hink o hem “as in
some sense al eady impai ed” [43, p. 69] and ea hem
di e en ly [42, 61, 63]. Fo example, child en migh be
ea ed di e en ly a school [39]. This does no need o be
ha m ul pe se, bu au ho s wa n ha i can ha e ad e se
impac s on ela ionships [15], cause con lic s wi h he
amily [13, 45, 52], and con ibu e o possible sel - ul ill-
ing p ophecies [15, 43, 53] (see also sec ion Bene icence
and Non-Male icence).
To p e en con lic s o misunde s andings wi hin ami-
lies and ela ionships, p o iding adequa e isk in o ma-
ion and an explana ion o wha a disease isk means o
he sc eened indi idual and ele an o he s is impo an .
Mul iple au ho s p opose ha amily counseling should
be o e ed when con lic is p obable [39, 47, 52]. Risk
in o ma ion can also ha e di ec consequences o ela-
i es when he isk is inhe i able o when pa en s need o
ake decisions on behal o hei child, o example. In e -
es s o amily o signi ican o he s can c ea e ensions
be ween he indi idual’s igh o keep isk in o ma ion
con iden ial and oppo uni ies o educe isk o o he s
( he p inciple o non-male icence). This aises ques ions
abou he du ies o he pa ien and his o he physician
owa ds o he pe sons a isk [40, 45, 52].
Responsibili y
Responsibili ies o heal h ou comes and he de elopmen
and p e en ion o illness a e discussed in he majo i y o
he included a icles [see Table2, column Responsibil-
i y]. As was ouched upon in he hemes o Au onomy
and Bene icence and Non-male icence, empowe men o
people o use isk in o ma ion o make heal h decisions
and manage hei well-being is an impo an d i e o
he ea ly de ec ion o disease isk ac o s. Al hough some
au ho s men ion he possibili y ha de ec ion o isk ac-
o s, especially biological ac o s, migh lead o asc ibing
dec eased esponsibili y o indi iduals o ill heal h [4,
31], mos au ho s discuss ha indi idual esponsibili ies
o heal h and well-being a e inc easing due o a ocus
on pe sonalized disease isks, leading o indi iduals also
inc easingly being held accoun able o hei illheal h [22,
24, 28, 29, 32, 47, 50, 51, 55, 59, 62]. Howe e , empha-
sizing indi idual esponsibili y o heal h and well-being
migh o e bu den indi iduals and sugges hey a e o
blame o ou comes ha a e no always wi hin hei con-
ol. Such lack o con ol can be caused by he amoun
and complexi y o heal h- ela ed in o ma ion [41] o he
lack o means and esou ces o be p oac i e abou heal h
[37, 42, p. 204].
Au ho s wa n ha i such esponsibili y shi s owa ds
he indi idual occu , indi iduals o pa en s who a e no
Page 16 o 16Jansen e al. BMC Medical E hics (2024) 25:25
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