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Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24
DELIVERABLE 1.3
AUTHORS
Rosá io Oli ei a – ICS ULisboa
in collabo a ion wi h he E hics Ad iso y Commi ee
28.04.2023
ETHICS
HANDBOOK
Re . A es(2024)4358829 - 17/06/2024
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Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24
PROJECT ACRONYM: FoodCLIC
PROJECT NUMBER: 101060717
WORK PACKAGE NUMBER
AND TITLE:
WP1 De eloping me hodological,
aining and moni o ing
amewo ks
LEAD BENEFICIARY: ICS - ULisboa
WORK PACKAGE LEADER: S ich ing VU
RELEVANT TASK: T1.6
DISSEMINATION LEVEL: Public
DUE DATE (MONTH): 28.04.2023 (M8)
VERSION: Upda ed e sion a e e iew RP1
17.06.2024
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EXECUTIVE SUMMARY
Deli e able “D1.3 E hics Handbook” desc ibes he FoodCLIC e hical guidelines o dealing wi h
s akeholde s and he pe sonal da a ga he ed h ough hei pa icipa ion in he p ojec ini ia i es,
assu ing compliance wi h he e hical alues and p inciples o scien i ic esea ch acco ding o hei
human igh s. I desc ibes he p ocedu es ha mus be ollowed o he p o ec ion o he e hical
igh s o all in ol ed pa icipan s o gua an ee ha he con iden iali y o he p o ided in o ma ion
and he iden i y o he pa icipan s in ol ed is main ained.
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TABLE OF CONTENTS
1. INTRODUCTION ................................................................................................................................ 7
2. THE ETHICS ADVISORY COMMITTEE ESTABLISHMENT AND FUNCTION ..................................... 9
3. PRACTICAL AND ETHICAL DILEMMAS IN COLLABORATIVE RESEARCH.....................................11
3.1 Gene al S akeholde s ...............................................................................................................11
3.2 The ulne abili y pe spec i e ....................................................................................................12
3.3 The esea ch pe spec i e .........................................................................................................15
4. ETHICAL GUIDELINES ....................................................................................................................16
4.1 Gene al amewo k ...................................................................................................................16
4.2 In o med Consen /In o med Assen ........................................................................................17
4.3 Indi idual Da a P o ec ion and P i acy ....................................................................................19
5. COMMUNICATION..........................................................................................................................21
6. RELEVANT REGULATIONS AND SCIENTIFIC STANDARDS............................................................23
7. REFERENCES ..................................................................................................................................25
ANNEXES ...........................................................................................................................................26
ANNEX I - PROJECT INFORMATION SHEET ...............................................................................27
ANNEX II - CERTIFICATE OF CONSENT FOR ADULTS.................................................................30
ANNEX III - CERTIFICATE OF CONSENT FOR PARENTS/GUARDIANS .......................................31
ANNEX IV - CERTIFICATE OF ASSENT FOR CHILDREN ..............................................................32
ANNEX V - CONFIDENTIALITY AGREEMENT..............................................................................33
ANNEX VI – MEDIA WAIVER .......................................................................................................34
ANNEX VII – SURVEY..................................................................................................................34
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HISTORY OF CHANGES
Numbe
Page
Change
1 8,9
The EAC comp ises a chai and wo ep esen a i es o he conso ium.
In he fi s yea o he p ojec EAC membe ship was as ollow:
Chai - P o esso Ma ia do Céu Pa ão Ne es, as ex e nal e hics expe
Conso ium membe 1 – D . Pim Klaassen, as VU ep esen a i e and e hics
expe
Conso ium membe 2 – D . Monika Ru , as ICLEI ep esen a i e.
Due o se e al impedimen s o hose membe s, in he second yea a
enomina ion p ocess ook place and he new membe s a e now pe o ming
hei oles and esponsibili ies on ad ising and suppo ing he conso ium:
Chai - Eme . P o . D . Tja d de Cock Buning, as ex e nal expe
Conso ium membe 1 – D . Os aldo San os, as conso ium ep esen a i e
(FM-ULisboa)
Conso ium membe 2 – MsC Anna B uen, as conso ium ep esen a i e
(ICLEI-Eu ope)
2 12
To accomplish wi h gende balance when dealing wi h ulne able
communi ies we mus conside he g ea a ia ions on he social and cul u al
con ex in wha conce ns he ole o women and hei main esponsibili y o
he p epa a ion o ood. Howe e , mos esea ch on ood p oduc ion ha
inco po a es he gende dimension is concen a ed on he Global Sou h,
whe e woman and gi ls ea he leas , especially in ha d imes.
O en his esea ch explo es how inequali ies in powe ela ions be ween men
and women ega ding p ope y igh s o land, educa ion, access o echnical
equipmen , e ilize s and ypes o seeds de e mine he p oduc ion, ade and
consump ion o ood. Typically, his esea ch is ini ia ed by he Uni ed Na ions
wi h he aim o imp o ing woman a me s’ access o esou ces, he eby
helping o end hunge . In he Global No h, gende -di e en ia ed s a is ics
abou p ope ies in fishe ies, land owne ship, ype o c ops being cul i a ed,
e c. a e a ailable. Gende is also one o se e al a iables in na ional die and
nu i ion su eys. Gende -
di e en ia ed s a is ics may o m he basis o
u he gende analysis o ood p oduc ion and consump ion. Possible
esea ch ques ions may be:
• Wha a e he causes o he s ong gende imbalance in he p oduc ion
and consump ion o ood?
• Wha a e he impac s o he gende ed di ision o labo wi hin he
bioeconomy, including in ag icul u e and fishe ies, on local
communi ies? Wha can be done o educe he gende imbalance?
• Wha is he significance o gende in he ansi ion p ocess owa ds a
sus ainable bioeconomy? Wha can be done o make people educe
ood was e and ea less mea ?
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These ques ions may e e o he consequences o ou esea ch and
in e en ions on he eal wo ld disbalance o women in, e.g. decision bodies
and oles in he ood chain.
Ne e heless, despi e he FoodCLIC p ojec con ains indeed an explici
emancipa ion goal, bu no specified pe gende , he in e en ion me hods
(lea ning ci cles) will be good oppo uni ies o inc ease awa eness and
empowe men . In one si ua ion i will g
i e a mayo , eache s, e aile s
inspi a ion o educe ood insecu i y. The gende awa eness is s uc u ally
buil in he need assessmen analysis and will be mo e p ominen in one ci y
con ex han in ano he ci y con ex . When ega ded as ele an by he
pa icipan s i will be aken up o co-c ea ion solu ions.
3 13
Rega ding he e en ual conflic o in e es , he applied me hodology o
eflexi e moni o ing and ac ion s a s by mapping he s akeholde s ela ed o
ood insecu i y in he local con ex , conside ing ha s akeholde s o he ood
sys em a e ee o be in a o o agains he sys em ans o ma ion. A
ele an achie emen is hus o build on win-win op ions oge he . Fo his o
happen espec o all s akeholde s is he e hical alue a s ake. Conflic o
in e es will be explo ed explici ly.
The e o e, in ision o he me hodology he wo s case is “ag ee o disag ee”
which is espec ul and ha dly an e hical p oblem. To a oid his p oblem
pa icipan s will be p e iously in o med abou he lis o a endees, so hey
may decide whe he hei p esence in he pa icipa o y sessions is
com o able and adequa e ega ding e en ual conflic o in e es .
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1. INTRODUCTION
The FoodCLIC p ojec aims o build s ong science-policy-p ac ices in e aces in o de o de elop
e idence-based and in eg a ed ood policies and ende planning amewo ks ood sensi i e,
c ea ing mo e p og essi e and esilien u ban ood en i onmen s wich empowe ci izens, pa icula ly
om dep i ed and ulne able g oups, o access, a o d and choose heal hie and mo e sus ainable
oods. The backbone o such in e aces a e Food Policy Ne wo ks, which will manage eal-wo ld
expe imen als in eigh Li ing Labs (LL) h ough lea ning-in-ac ion.
This deli e able, ‘D1.3: E hics handbook’, iden ifies he e hical ques ions ha ha e o be aken in o
conside a ion o he FoodCLIC p ojec implemen a ion. I s aim is o p o ide guidelines o be
ollowed by he LL eams aking pa in di e en pa icipa o y ac i i ies when dealing wi h
s akeholde s and/o pa icipan s’ da a, ei he in p ac ical o esea ch e ms, and u nishes he layou
o he necessa y empla es o ob aining in o med consen om FoodCLIC pa icipan s. This
handbook will be pa icula ly a en i e o he inclusion o ood dep i ed and ulne able g oups and
gende aspec s. I p esen s p elimina y guidelines o he LL o se up hei pa icipa o y ini ia i es
and da a collec ion p ocess. To iden i y he e hical issues a ec ing (o likely o a ec ) he LL eams
when app oaching he s akeholde s, LL eams ha e filled in a su ey and he esul s ha e been
conside ed in he e hical p ocedu es p esen ed in he Handbook.
Howe e , as a as hei ini ia i es will go deepe , new ques ions and needs may a ise, and answe s
will be suppo ed by he E hical Ad iso y Commi ee (EAC). Thus, he Handbook will e ol e du ing
he p ojec pe iod o co e as much as possible all he e hical needs. A he end o he p ojec he
way ha e hical challenges ha e been add essed and o e come will be syn he ised and epo ed
(D1.8).
A e he in oduc ion, we s a in chap e 2 by explaining how he EAC has been es ablished and
wha i s unc ions a e. In chap e 3, he o eseen e hical dilemmas a e desc ibed based on he su ey
esponded by he LL eams, including he ulne abili y and esea ch pe spec i es. Chap e 4 gi es
a en ion o he e hical guidelines, especially in wha conce ns indi idual da a p o ec ion, p i acy and
whe e he In o med Consen and In o med Assen a e in oduced and complemen ed by se e al
annexes:
• a fi s d a o he p ojec in o ma ion shee ;
• he di e en documen s ela ed o pa icipan consen when aking pa in he di e en
FoodCLIC ac i i ies and subsequen ly o he collec ion o hei da a;
• empla es o he da a exchange o m and he confiden iali y ag eemen , o suppo he
exchange o p ima y esea ch da a which may con ain pe sonal da a o he pa icipan s
amongs he FOODCLIC p ojec pa ne s, in a icula ion wi h he Da a Managemen Plan
(T1.5; D1.2)
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Chap e 5 aims o poin ou he mos ele an aspec s o communica ion in he sense o app oaching
he s akeholde s and in chap e 6 ele an egula ions and scien ific s anda ds a e p o ided o be
ollowed by he LL eams.
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2. THE ETHICS ADVISORY COMMITTEE
ESTABLISHMENT AND FUNCTION
The FoodCLIC E hics Ad iso y Commi ee (EAC) has been es ablished h ough a p ocess ha
complies wi h he ‘E hics Ad iso s/E hics Ad iso y Boa ds in EC- unded P ojec s’ o he Eu opean
Commission (2012)1, including he p ocedu es o nomina e i s membe s, he defini ion o hei
compe ences and unc ioning. This p ocess is desc ibed in a documen s uc u ed o he
FoodCLIC’s Miles one 1.
The EC pe cei es ‘e hics’ as including ques ions o legal and egula o y compliance as well as a
b anch o philosophy. I is pa o a p ocess o ‘go e nance’. In his ein, he EC documen “A
comp ehensi e s a egy on how o minimize esea ch misconduc and he po en ial misuse o
esea ch in EU- unded esea ch” asse s ha e hics is a “key o e sigh mechanism” o ensu e ha
EU- unded esea ch is no misused. In FOODCLIC, we hence see e hics as a cen al elemen o
esea ch ha wa an s ha commonly sha ed e hical p inciples a e no iola ed and ha , gene ally
speaking, all esea ch ac ions a e unde aken wi h app op ia e sensi i i y o he mo al dimensions
o esea ch p ocesses and p oduc s.
In gene al, wi hin he FoodCLIC p ojec , we conside he EAC as a g oup o (e hics) expe s gi ing
ad ice o esea che s, esea ch g oups o p ojec conso ium pa ne s in he con ex o his EU-
unded p ojec . The aim o he EAC is o build a ela ionship be ween he esea ch p ocess and e hics
ha is collabo a i e and cons uc i e ( a he han nega i e and inhibi i e). Fu he mo e, he wo k o
he EAC expe s is o acili a e, build upon and complemen exis ing o e sigh egimes by compe en
e hical and legal au ho i ies. This commi ee will p o ide inpu o all esea ch p o ocols and
coo dina e he e iew p ocess. The EAC will pa icula ly be a en i e o he inclusion o dep i ed and
ulne able g oups and gende aspec s.
The EAC mee s whene e ques ions o doub s eme ge ha dese e a en ion om he EAC, bu
ne e mo e o en han once a mon h. Howe e , he commi ee is always a ailable o p o ide ailo -
made suppo along he p ojec and we ensu e ha we come back o people's ques ions wi hin a
mon h, e.g. du ing he Li ing Lab suppo mee ings, in case any e hical dilemmas a ise ha pa ne s
do no immedia ely know how o handle a e ha ing consul ed he cu en E hical guidance.
The EAC comp ises a chai and wo ep esen a i es o he conso ium. In he fi s yea o he p ojec
EAC membe ship was as ollow:
• Chai - P o esso Ma ia do Céu Pa ão Ne es, as ex e nal e hics expe
• Conso ium membe 1 – D . Pim Klaassen, as VU ep esen a i e and e hics expe
1 h ps://ec.eu opa.eu/ esea ch/pa icipan s/da a/ e /h2020/o he /hi/e hics-guide-ad iso s_en.pd
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4. ETHICAL GUIDELINES
E hical aspec s a e an impo an pa o esea ch and ha e o be eflec ed on h oughou he en i e
esea ch p ocess, s a ing om he concep ual phase o he publica ion and dissemina ion o he
esea ch findings. The Eu opean Commission defines e hics as a key dimension o Responsible
Resea ch and Inno a ion (RRI) as ollows:
“Eu opean socie y is based on sha ed alues. In o de o adequa ely espond o socie al challenges,
esea ch and inno a ion mus espec undamen al igh s and he highes e hical s anda ds.
Beyond he manda o y legal aspec s, his aims o ensu e inc eased socie al ele ance and
accep abili y o esea ch and inno a ion ou comes. E hics should no be pe cei ed as a cons ain
o esea ch and inno a ion, bu a he as a way o ensu ing high quali y esul s”.
In his chap e i p esen ed he gene al e hical amewo k he FoodCLIC p ojec is ollowing and he
o ms o be used by he LL eams when p omo ing pa icipa o y ini ia i es.
4.1 GENERAL FRAMEWORK
The FoodCLIC conso ium aims o ensu e he highes s anda ds o in eg i y and p o essionalism in
he conduc o esea ch. The conso ium is commi ed o add ess all po en ial e hical issues ha
may a ise du ing he p ojec and has he e o e defined a se o p ocedu es o dealing wi h ela ed
ques ions in he mos esponsible way. E hics should no be pe cei ed as a bu den, bu a he , as a
guiding p inciple, which helps o ensu e high quali y o esea ch and he jus ifica ion o associa ed
decisions. The conso ium will ocus specifically on he ollowing h ee main e hical aspec s defined
by he Eu opean Commission (2015):
• esea ch in eg i y and good esea ch p ac ice;
• esea ch e hics o he p o ec ion o esea ch objec s;
• socie al ele ance and e hical accep abili y o esea ch and inno a ion ou comes.
Fo his eason, one o he mos impo an asks in he p ojec is o design igo ous and obus
e hical guidance ha , whe e e and whene e pe inen , will p o ec he iden i y and p i acy o he
in ol ed pa icipan s. This will conc e ely be done by:
• p o iding an in o ma ion shee abou he p ojec ’s objec i es;
• communica ing benefi s and isks o he in ol ed pa icipan s;
• ge ing consen o p ocessing p i a e da a o aking pic u es, eco ding ideos, w i ing
epo s and p esen ing s a is ics;
• managing da a esponsibly (please, see FoodCLIC’s D1.2 - Da a Managemen Plan).
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Al hough Da a Managemen is no co e ed in he cu en E hics Handbook, he e a e some
in e connec ions and o e laps ha dese e o be conside ed. We conside he FoodCLIC esea ch
eam will collec da a om indi iduals in a numbe o ways h ough i ual pla o ms as well as in-
pe son o on-si e. Thus, we expec a leas he ollowing me hods o da a collec ion will be used:
• ace- o- ace o online in e iews and wo kshops;
• au oma ically logged use da a om online pla o ms, such as MS Teams (Sha epoin ) and
Zenodo.
Da a collec ed h ough hese di e en me hods a e essen ial o he assessmen o he p ojec ’s
ou pu s, ou comes and impac . Da a s o age (loca ion, du a ion), findabili y, accessibili y,
in e ope abili y and eusabili y a e all de ailed in deli e able D1.2 – Da a Managemen Plan.
FoodCLIC also suppo s social jus ice and inclusion, by ollowing an inclusi e app oach, whe e also
he elde ly and isually impai ed people a e enabled o pa icipa e in he p ojec ’s ac i i ies. This is
specifically accomplished by ensu ing ha he asks o he ci izen scien is s wi hin he eigh
FOODCLIC demons a o cases include ac i i ies ha a e accessible o di e en a ge g oups,
dese ing special a en ion o ulne able g oups.
In he social sciences, he concep o “ ulne abili y” has been used o de ine people who lack he
capaci y o make decisions, due o physiological o psychological ac o s o s a us inequali ies,
and/o people who expe ience impai ing condi ions ha migh cons ain o diminish hei physical
and cogni i e au onomy. This ca ego y includes g oups ha a e adi ionally ma ginalized,
ins i u ionalized g oups, g oups wi hou he men al capaci y o consen , g oups ha engage in isky
beha io o ha e con ac wi h/li e in en i onmen s conside ed dange ous o impo e ished (Hilá io
and Augus o, 2020). “Vulne abili y” is o be con as ed wi h he concep o “sensi i e opics”, which
has been used o desc ibe hemes ha migh be conside ed in usi e and/o ha m ul o esea ch
subjec s and/o o he esea che . Al hough sensi i i y is ela ional — i.e., is nego ia ed and sha ed
in he ela ionship wi h o he s — i is possible o an icipa e sensi i i y in ce ain opics, based on pas
expe iences, and on a kind o es ablished and sha ed knowledge a ound ce ain hemes and
subjec s ha migh lead o nega i e emo ions. Gene ally speaking, hese opics conce n issues ha
a e conside ed aboo o s igma izing, issues ela ed o illegal o c iminal p ac ices and pe sonal
issues ha can cause discom o . The e is a e y close ela ionship be ween he concep o
ulne abili y and sensi i i y, since he esea ch on g oups conside ed ulne able can lead o
add essing opics conside ed sensi i e, and ice e sa.
4.2 INFORMED CONSENT/INFORMED ASSENT
Fo he pu pose o p o ec ing he da a and p i a e in o ma ion an in o med consen needs o be
gua en eed in all he ini ia i es unde aken by he FoodCLIC p ojec ha in ol e any kind o
s akeholde o pa icipan . An in o med consen is he p ocess h ough which a esea che ob ains,
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as well as main ains, he pe mission o a pe son o a pe son's au ho ized ep esen a i e o
pa icipa e in a esea ch s udy. In o med consen is achie ed when pa icipan s [a.k.a., "human
subjec s"] in a s udy ecei e ull disclosu e o he esea ch plan and i s in en , unde s ands all he
in o ma ion ha is disclosed o hem, olun a ily consen s o pa icipa e in he s udy and is
compe en o do so, and unde s ands ha hey may wi hd aw om he s udy a any ime.
Fo his o happen he ollowing s a egies will be pu sued:
• The FoodCLIC pa icipan s will be comp ehensi ely b ie ed o be able o exe cise in o med
consen ega ding hei pa icipa ion in di e en p ojec ac i i ies, including hei
pa icipa ion in su eys. The pu poses o he esea ch, as well he p ocedu es and he
handling o pa icipan da a, will be explained o hose pa icipan s in he p ojec offline
in e en ions bo h e bally and in w i ing h ough he p ojec ’s in o ma ion shee . Especially
o he ace- o- ace in e en ions (in e iews, wo kshops o e en s) hese explana ions a e
c ucial and will be pa o he ini ial b iefing o he FoodCLIC pa icipan s. Fo people only
in e es ed in aking pa in he p ojec online ac i i ies, his in o ma ion will be p o ided in
w i en o m. Pa icipa ion in he di e en su eys and da a-collec ion me hods implemen ed
wi hin he ac i i ies o he FoodCLIC p ojec will be olun a y and da a will only be collec ed
wi h he in o med consen o he pa icipan s. The p ocess o ob aining in o med consen
om he pa icipan s in he p ojec comp ises o he p ojec in o ma ion shee (see Annex I)
oge he wi h a e bal explana ion o ace- o- ace e en s and, o adul pa icipan s, he
confi ma ion o pa icipa ion in he di e en ac i i ies as well as he au ho isa ion o he use
o da a collec ed wi hin hese ac i i ies by signing bo h ce ifica es o consen (Annex II and
III). The in o med consen mus clea ly s a e he pu poses o which da a will be used,
including ha (i possible, o anonymize) i will be made accessible o hi d pa ies o
possible e-use, ollowing he EU's open science policy.
• Fo child en who will be in ol ed in he FoodCLIC ac i i ies, addi ionally o hem and hei
pa en s/gua dians being p o ided wi h he p ojec in o ma ion shee (de ails o hei
in ol emen will also be e bally explained du ing ace- o- ace ac i i ies), he
pa en s/gua dians o child en unde he age o 16 o 18, depending on he egula ion in each
coun y2, will be equi ed o confi m hei app o al o hei child o pa icipa e in he
FoodCLIC ac i i ies and o au ho ise he collec ion and analysis o hei child’s da a o he
pu pose o esea ch wi hin he p ojec , by signing he ce ifica e o consen o pa en s
(Annex III). In addi ion o he ce ifica e o consen o pa en s, he child en hemsel es will
be equi ed o sign he ce ifica e o assen o child en (Annex IV) o confi m ha hey ag ee
o ake pa in he FoodCLIC ac i i ies. When ob aining in o med consen du ing he ace- o-
ace e en s, a membe o s a o he FoodCLIC pa ne o ganisa ion ha would ha e
explained he ele an in o ma ion o consen o he pa icipan s will also sign and da e he
di e en documen s.
2 h p:// a.eu opa.eu/en/publica ion/2019/child-pa icipa ion- esea ch
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Table 1 - O e iew o he o ms/ empla es o In o m Consen
WHO?
WHAT?
TARGET GROUP
TEMPLATE
PARTICIPANTS
P ojec in o ma ion
shee
Po en ial pa icipan s and o po en ial
pa icipan s unde he age o 16, also hei
pa en s/gua dians
Annex I
Ce ifica e o consen
o pa icipan s
Pa icipan s
Annex II
Ce ifica e o consen
o pa en s/gua dians
Pa en s/legal gua dians o unde age
(16 o 18,
depending he coun y) pa icipan s
Annex III
Ce ifica e o assen
o child en
Unde age pa icipan s
Annex IV
RESEARCH
PARTNER
Confiden iali y
ag eemen
FoodCLIC p ojec pa ne in ol ed wi h
pa icipan s da a
Annex V
ALL
Media wai e
Pa icipan s o ace- o- ace e en s
Annex VI
4.3 INDIVIDUAL DATA PROTECTION AND
PRIVACY
Only s ic ly ele an and necessa y da a will be collec ed, s o ed and analysed. To ensu e indi idual
da a p o ec ion and p i acy, da a will be s o ed on a passwo d-p o ec ed se e o he pa ne
ins i u ion ha has ga he ed he da a h ough ques ionnai es, in e iews, wo kshops o e en s.
Whene e possible, da a should be collec ed al eady in an anonymized way (i.e., no con aining any
names, add esses o o he in o ma ion ha may lead o he iden ifica ion o a pa icipan ). When no
possible (e.g., o longi udinal analysis), a e da a collec ion, all pe sonal da a (e.g., use da a, da a
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om ques ionnai es, in e iews, wo kshops o any o he engagemen and awa eness ac i i ies), will
be anonymised o pseudo anonymized o ensu e ha indi iduals canno be iden ified. Da a should
hen be s o ed so ha he iden i y o esponden s is only accessible o he FoodCLIC p ojec pa ne
di ec ly in ol ed in he da a collec ion. In e iew and wo kshop ma e ials, which may e eal he
iden i y o he indi idual FoodCLIC pa icipan s, will no be sha ed wi h any hi d pa y, including hei
o ganisa ions, schools o ins i u ions.
Only anonymized da a is deemed adequa e o sha ing wi h o he FoodCLIC pa ne s ( h ough
Sha epoin /MS Teams), and o openly sha ing h ough he Zenodo eposi o y (as o eseen in he
Da a Managemen Plan), and such sha ing is only possible i consen has been gi en.
The esul ing epo s and publica ions will only p o ide agg ega ed da a and anonymised quo a ions
o ensu e ha he da a canno be aced back o he indi idual pa icipan s.
In addi ion o he p esen guidelines, he FoodCLIC’s Da a Managemen Plan (D1.2), and he G an
Ag eemen , he p ojec pa ne s, including he eigh Li ing Labs, will ensu e ha he da a collec ion,
s o age and usage a e in line wi h he EU egula ions and na ional laws on da a p o ec ion.
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5. COMMUNICATION
Du ing he p ojec , he FoodCLIC esea ch pa ne s will communica e o he in ol ed pa icipan s
he po en ial isks and benefi s o hei engagemen in FoodCLIC ac i i ies.
The p ojec in o ma ion shee (Annex I) will:
• illus a e he pu pose and objec i es o he p ojec ;
• desc imina e wha is expec ed om he pa icipan s h ough hei in ol emen in he s udy
(e.g., filling in a ques ionnai e ha akes a ound 15 minu es)
• explain he possibili y o e use, join o wi hd aw om he ac i i ies o he p ojec a any ime
wi hou gi ing eason and wi h no consequences;
• communica e he po en ial benefi s and isks o pa icipa ion; con ac s o he in ol ed
esea che s
The in o med consen (Annex II- Annex IV) will:
• equi e explici confi ma ion ha he pa icipan has ead, go answe s o any doub s abou
he s udy, and comp ehended all in o ma ion laid ou in he p ojec in o ma ion shee
• be signed as an ag eemen by bo h he pa icipan s and he FoodCLIC esea che s; and
• be deli e ed o he pa icipan (a copy) and kep and documen ed by he esponsible
esea che s.
Each pa icipan will be in o med o he expec a ions ega ding hei pa icipa ion in he FoodCLIC
p ojec ac i i ies in ad ance h ough he p ojec in o ma ion shee (Annex I) and can ag ee o ake
pa by signing he in o med consen o m (Annex II – Annex IV), which is w i en in a sui able
language o he specific a ge g oups. In he ac i i ies whe e younge child en a e in ol ed, sui able
ways o communica ion should be used o ensu e hey unde s and wha is communica ed o asked,
o e en o e alua e hei commi men and how hey eel abou pa icipa ing in he p ojec , e.g., using
figu es. Fo he ace- o- ace e en s he consen o ms will also be ansla ed in o he na ional
language o ensu e comp ehension. In case o he pa icipa ion o child en, he esponsible
FoodCLIC esea che has o ob ain he consen o in ol ed child en (Annex IV) as well as pa en al
consen (Annex III).
Wi h ega ds o media ma e ial p oduced du ing e en s and wo kshops, he FoodCLIC p ojec eam
will dis ibu e a media wai e (see Annex VI) o he pa icipan s o make su e ha hey a e in o med
o he plans o p oduce such ma e ial and gi e hem he possibili y o ag ee o disag ee wi h hei
p oduc ion and use o he FoodCLIC p ojec ’s pu poses.
As al eady men ioned abo e, he signed ce ifica es o consen o assen (see Annex II - Annex IV)
will be collec ed om he pa icipan s and s o ed oge he wi h he collec ed da a by he esponsible
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FoodCLIC esea che . The pa icipan s ha e he possibili y o wi hd aw hei consen , assen and
pa icipa ion a any ime o he p ojec wi hou gi ing eason and wi h no consequences. The
p ocedu e o how hese comple ed empla es will be implemen ed and s o ed a he FoodCLIC
esea che s’ o ganisa ions will be discussed in he conso ium du ing he egula Gene al Assembly
mee ings. The empla es Annex I - Annex VI will be sha ed wi h he p ojec pa ne s on he in e nal
p ojec po al in ad ance unde he ollowing link: h p:// oodclic.eu.
All FoodCLIC p ojec pa ne s ha e access o hese documen s in o de o make sugges ions o
adap a ion wi h he goal o ensu ing ha he in o ma ion p o ided can be easily unde s ood by he
a ge g oups. These sugges ions will esul in an adap a ion loop o he ins umen s a e which
FoodCLIC p ojec pa ne s can ansla e hem in o hei na ional languages o hei specific
FoodCLIC ac i i ies and a ge g oups.
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6. RELEVANT REGULATIONS AND
SCIENTIFIC STANDARDS
The conso ium ollows he Eu opean egula ions and scien ific s anda ds o he collec ion and
p ocessing o pa icipan da a. Some basic egula ions and guidelines a e lis ed as ollows.
The FoodCLIC p ojec will ully espec he ci izens’ igh s as epo ed by EGE (Eu opean G oup on
E hics in Science and New Technologies3) and as p oclaimed in he Cha e o Fundamen al Righ s
o he Eu opean Union (2000/C 364/01), i.e. enhancing and os e ing he pa icipa ion o Eu opean
ci izens in educa ion, ega dless o cul u al, linguis ic o social backg ounds. Rega ding he pe sonal
da a collec ed du ing he li e ime o he p ojec o esea ch pu poses, he p ojec will make e e y
e o o heed o he ules o he p o ec ion o pe sonal da a as desc ibed in Di ec i e 95/46/EC5 o
he Eu opean Commission.
In addi ion, he conso ium ollows he basic Eu opean Regula ions and Guidelines:
● The Cha e o Fundamen al Righ s o he Eu opean Union:
h ps://www.eu opa l.eu opa.eu/cha e /de aul _en.h m
Eu opean Con en ion on Human Righ s:
h p://www.ech .coe.in /Documen s/Con en ion_ENG.pd
● Ho izon 2020 e hics sel -assessmen :
h p://ec.eu opa.eu/ esea ch/pa icipan s/po al/doc/call/h2020/h2020-msca-i n-
2015/1620147-h2020_-_guidance_e hics_sel _assess_en.pd
● EU Code o E hics: h p://www. espec p ojec .o g/e hics/412e hics.pd
● Eu opean Tex book on E hics in Resea ch: h ps://ec.eu opa.eu/ esea ch/science-
socie y/documen _lib a y/pd _06/ ex book-on-e hics- epo _en.pd
● Eu opean da a p o ec ion legisla ion: h ps://gdp -in o.eu/
● RESPECT Code o P ac ice o Socio-Economic Resea ch:
h p://www. espec p ojec .o g/code/ espec _code.pd
● Code o E hics o he In e na ional Sociological Associa ion (ISA): h ps://www.isa-
sociology.o g/en/abou -isa/execu i e-commi ee/code-o -conduc
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● A P elimina y Opinion on da a p o ec ion and scien ific esea ch:
h ps://edps.eu opa.eu/si es/edp/files/publica ion/20-01-06_opinion_ esea ch_en.pd
• Adap a ion o he guidance o he Ho izon Eu ope e hics app aisal p ocess and
e minology: h ps://ec.eu opa.eu/in o/ unding- ende s/oppo uni ies/docs/2021-
2027/ho izon/guidance/ oles-and- unc ions-o -e hics-ad iso y-e hics-ad iso y-boa ds-
in-ec- unded-p ojec s_he_en.pd
In addi ion o he gene al EU-wide guidelines, he FoodCLIC conso ium also has o conside and
espec he na ional egula ions and laws as well as he in ol ed esea ch o ganisa ions’ own e hical
egula ions. In egula mee ings o he FoodCLIC p ojec ’s e hics commi ee as well as hose o he
conso ium, such issues will be discussed o ensu e ha he in ol ed pa ies a e no only awa e o
hei esponsibili ies, bu also ollow he espec i e guidelines.
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7. REFERENCES
Hilá io, A. P., Augus o, F. R. (Eds.) (2020). P ac ical and E hical Dilemmas in Resea ching Sensi i e
Topics wi h Popula ions Conside ed Vulne able. Basel: MDPI.Special Issue published online in he
open access jou nal Socie ies (ISSN 2075-4698)
h ps:// eposi o io.ul.p /bi s eam/10451/44817/1/P ac ical_and_E hical_Dilemmas_in_Resea chin
g_Sensi i e_Topics_wi h_Popula ions_Conside ed_Vulne able.pd
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ANNEX IV - CERTIFICATE OF ASSENT FOR CHILDREN
The p ojec FoodCLIC is p omo ing mo e sus ainable, a o dable and heal hy ood o all.
• I unde s and my in ol emen in he p ojec
• I ha e ead he p ojec in o ma ion (o had he in o ma ion ead o me). I ha e had my ques ions
answe ed and know ha I can also ake ques ions la e i I ha e hem
• I ag ee o ake pa in he esea ch.
Name o he child___________________________________
Signa u e o he child ________________________________
Da e (Day/Mon h/Yea ) ______________
• I ha e cu en ly ead ou he in o ma ion shee o he po en ial pa icipan and o he bes o my abili y
made su e ha he child unde s ands he p ocess she/he will be in ol ed in wi hin he amewo k o
he FoodCLIC p ojec .
• I con i m ha he child was gi en an oppo uni y o ask ques ions abou he p ojec and all he
ques ions asked by he /him we e answe ed co ec ly and o he bes o my abili y. I con i m ha he
child has no been coe ced in o gi ing consen and he consen has been gi en eely and olun a ily.
• A copy o he assen o m and been p o ided o he pa icipan and hei pa en s/gua dian
Name o he p ojec eam membe /pe son aking assen ___________________
Signa u e o he p ojec eam membe /pe son aking assen ________________
Da e (Day/Mon h/Yea ) ______________________________________________
Pa en s/gua dian has/ha e signed he ce i ica e o consen : Yes o No
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ANNEX V - CONFIDENTIALITY AGREEMENT
The use da a sha ed be ween he esea che s in he FoodCLIC p ojec con ains pe sonal iden ifiable
in o ma ion (PII) which is p o ec ed by law. To comply wi h his law, usage and sha ing o da a is es ic ed
and you mus ollow he ules o guidelines desc ibed in he e hical guidelines defined o FoodCLIC o
collec ing, p ocessing, sha ing and s o ing o da a.
In addi ion o his you a e obliged o comply wi h he ollowing e ms:
• I will no sha e he pa icipan da a, collec ed by he p ojec eam, I ecei e wi h any hi d pa ies, o
o he membe s o he conso ium o he FoodCLIC p ojec wi hou explici , w i en consen om he
pe son(s) who p o ided he da a.
• Whe e ele an , I will ins uc he people lis ed below who ha e access o he da a o he ele an
e hical p o ocols and ensu e ha hey ollow he guidelines defined o he p ojec
• I will dele e he da a a leas _____ mon hs a e he p ojec ou comes ha e been published
( ecommended ime is 3 mon hs)
Decla a ion: I he eby decla e my consen wi h he ules ou lined abo e:
Da e: _____________________________________________________________________________________________
Name & O ganisa ion: _____________________________________________________________________________
Signa u e: _________________________________________________________________________________________
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ANNEX VI – MEDIA WAIVER
I he eby g an [name o he o ganisa ion] pe mission o use my image, likeness and sound o my oice as
eco ded on a pho og aph, ideo o o he digi al media in any and all o i s publica ions, including web-based
publica ions, wi hou paymen s o o he conside a ion.
I unde s and and ag ee ha all pho os will become he p ope y o [name o he o ganisa ion] o edi , al e ,
copy, exhibi , publish o dis ibu e hese pho os o any law ul pu pose. In addi ion, I wai e any igh o inspec
o app o e he finished p oduc whe ein my likeness appea s. Addi ionally, I wai e any igh o oyal ies o o he
compensa ion a ising o ela ed o he use o he pho o.
I he eby hold ha mless, elease and o e e discha ge [name o he o ganisa ion] om all claims. Demand and
causes o ac ion which I, my hei s, ep esen a i es, execu o s, adminis a o s o any o he pe sons ac ing on
my behal o on behal o my es a e ha e o may ha e by eason o his au ho iza ion.
By signing his o m, I acknowledge ha I ha e ead and ully unde s ood he abo e elease and ag ee o be
bound he eby. I affi m ha I am a leas 18 yea s old, o i I am unde 18 yea s old, I ha e ob ained he equi ed
consen o my pa en s/legal gua dians as e idenced by he signa u e below.
Name ______________________________________________________________
Signa u e ___________________________________________________________
Da e ________________________________________________________________
I I am unde 18 yea s old, a pa en /legal gua dian mus sign:
Pa en /legal gua dian signa u e____________________________________
Da e: ___________________________________________________________
ANNEX VII – SURVEY
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Su ey o LL eams (coo dina o s and esea che s)
Objec i e o he su ey
To iden i y e hical dilemmas ha each LL may o esee when dealing wi h ulne able g oups. The esul s a e
mean o be conside ed in he E hical Handbook and he defini ion o he In o med Consen Fo ms.
Wha is an e hical dilemma?
An e hical dilemma (e hical pa adox o mo al dilemma) is a p oblem in he decision-making p ocess be ween
wo possible op ions, nei he o which is absolu ely accep able om an e hical pe spec i e.
Gene ally speaking, a dilemma may be seen as a conflic ha need o find a balance be ween di e en
al e na i es. I is no a p oblem, no e en a difficul one, o sol e. A p oblem has a solu ion, while a dilemma is
abou finding a balance be ween di e en al e na i es. Howe e , i should be poin ed ou ha a dilemma can
be p oblema ic in he sense ha i can be difficul o find he igh balance. A dilemma is hus a goal conflic
whe e i is a ma e o finding a balance be ween goals ha a e each desi able bu whe e hey a e in opposi ion
o each o he .
Wha is a ulne able g oup and he inhe en sensi i eness?
Wi hin he ield o social sciences, he concep o ulne abili y has been used o de ine people who lack he
capaci y o make decisions, due o physiological/psychological ac o s o s a us inequali ies, and/o who
expe ience impai ing condi ions ha migh cons ain o diminish hei physical and cogni i e au onomy. In
his ca ego y, i is possible o include g oups ha a e adi ionally ma ginalized, ins i u ionalized g oups,
g oups wi hou he men al capaci y o consen , g oups ha engage in isky beha io o ha e con ac wi h/li e
in en i onmen s conside ed dange ous o impo e ished. On he o he hand, he concep o sensi i e opics
has been used o desc ibe hemes ha migh be conside ed in usi e and/o ha m ul o esea ch subjec s
and/o o he esea che . Al hough sensi i i y is ela ional—i.e., is nego ia ed and sha ed in he ela ionship
wi h o he s —i is possible o o esee sensi i i y in ce ain opics, based on pas expe iences, and on a kind o
es ablished and sha ed knowledge a ound ce ain hemes and subjec s ha migh lead o nega i e emo ions.
Gene ally, hese opics conce n issues ha a e conside ed aboo o s igma izing, issues ela ed o illegal o
c iminal p ac ices and pe sonal issues ha can cause discom o . The e is a e y close ela ionship be ween
he concep o ulne abili y and sensi i i y, since he esea ch on g oups conside ed ulne able can lead o
add essing opics conside ed sensi i e, and ice e sa.3
Whe e o ind he su ey? DMP Su ey E hics ques ions.docx
Deadline o espond o he su ey: by he end o he 20 h o Ma ch.
3 Hilá io, A. P., Augus o, F. R. (Eds.) (2020). P ac ical and E hical Dilemmas in Resea ching Sensi i e Topics wi h Popula ions Conside ed
Vulne able. Basel: MDPI. [This is a ep in o a icles om he Special Issue published online in he open access jou nal Socie ies (ISSN 2075-
4698)
h ps:// eposi o io.ul.p /bi s eam/10451/44817/1/P ac ical_and_E hical_Dilemmas_in_Resea ching_Sensi i e_Topics_wi h_Popula ion
s_Conside ed_Vulne able.pd
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Li ing Lab: _________________________________________________
Responden :
LL coo dina ion ____________________________________________
LL Resea che _____________________________________________
QUESTIONS
1. Which g oups a e you planning o wo k wi h?
G1. Adul s
G2. You h
G3. Child en
G4. Elde ly
G5. Less a o ed (Po e y/Low income)
G6. Less educa ed
G7. Food dep i ed
G8. Heal h / Malnu i ion
G9. In e cul u al g oups
G10. Legal mig an s
G11. Undocumen ed aliens
G12 O he (s) ______________________
2. Which o hose g oups a e conside ed ulne able and in which sense?
Please iden i y he g oup(s) and he espec i e ulne abili y (social, economic, heal h, cul u al…)
3. Which kind o p oblems/conflic s do you expec o ace when app oaching hose ulne able g oups?
Please lis he g oups in ques ion 1 (numbe ) and ela e wi h he expec ed p oblems below (le e ) (e.g G3 b.
– Less educa ed g oup wi h Lack o Confidence)
a. A ailabili y o ime
b. Lack o confidence
c. Lack o in e es /mo i a ion
d. Communica ion ba ie s
. Poli ical issues
g. Cul u al/E hnical issues (e.g. Muslim women)
h. Violence
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i. T ans iden i y
j. Su e ing
l. Physical ba ie s
m. S igma iza ion
n. Reco dings and pic u es
o. O he (s) ________________________
4. Conside ing he p oblems you ha e iden ified, which ype o e hical dilemma do you o esee when
app oaching he ulne able g oups?
4.1 Which kind o e hical dilemmas do you o esee when in ol ing ac o s om he quad uple-helix
g oups? (Go e nmen and public sec o , Resea ch and educa ion, Ci il socie y, Business and
indus y) (See Figu e 2 o he D1.1)
4.2 Which kind o e hical dilemmas do you o esee when in ol ing pa icula ly ac o s om he
quin uple-helix g oups? (Na u al en i onmen ) (See Figu e 2 o he D1.1)
4.2 Which o e hical dilemmas would equi e an In o med Consen Fo m?
5. How do you expec he ulne abili ies p e iously iden ified would influence he implemen a ion o he
eal-li e in e en ions in e ms o E hics?
6. Which opics o he esea ch do you expec o be (po en ially) dealing wi h e hical dilemmas? ( o be
eponded by LL esea che )
7. To wha ex en will he opics in he esea ch be (po en ially) sensi i e? ( o be esponded by LL
esea che )
Final no e: The EAC would like o communica e an in en ion o p o ide ailo -made suppo along he p ojec ,
e.g. du ing he LL suppo mee ings, in case any e hical dilemmas a ise ha pa ne s do no immedia ely
know how o handle a e ha ing consul ed he guidance we a e p epa ing.
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PARTNERS
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CONTACT US:
www. oodclic.eu
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