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8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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Lijjalthig, stirfka, prilasshgk, fgn usa
ic `uefg ohijikhlfj sfepjas= t`a sphrht
ic t`a jfws
@fl`aeh Fyfn
^rfhghgk Liursa hg \axufj fgn _aprinulthva @afjt` _asafrl`Kagavf, ? Efrl` ?448
KCEA_ sl`ijfrs`hp
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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^`a \pjaag
[`i Lfea hgcrie t`a Lijn
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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Ht wfs hg Fjfsbf.
Ft t`a oakhgghgk ic 68;3.
Fg agkhgaar wirbhgk ig phpajhgas wfs git caajhgk varywajj.
Fs f rafsigfoja efg, `a chgfjjy wagt ti saa f niltir.
Fctar eanhlfj axfehgfthigs fgn jfoirftiry tasts, t`a
nhfkgishs wfs orutfj= t`hs efg wfs succarhgk crie f rfrafgn nafnjy nhsafsa, f `fhry-lajj jaubfaehf.
^`a igjy l`fgla ti sjiw niwg ir stip t`a nhsafsaprikrasshig saaean ti oa ti raeiva t`a pfthagts spjaag.
F surkhlfj iparfthig wfs sullasscujjy lfrrhan iut ig ?4Iltioar 68;3. ^`ag t`a pfthagt ligthguan ti eaat `hsNiltir avary shx eigt`s, cir eanhlfj axfehgfthigs.
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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F caw yafrs jftar, t`a pfthagt nhslivaran t`ft=
siea ^ lajj sfepjas hssuan crie `hs raeivanspjaag wara usan wht`iut `hs ligsagt oy t`a
niltir ti navajip f vary prichtfoja lajj jhga
bgiwg fs Ei,
t`a iutliea ic t`hs wirb wfs pftagtan
(680
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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\i, nujy agliurfkan oy `hs jfwyar, t`hs efgnalhnan ti chja f jfwsuht si fs ti iotfhg=
f li-iwgars`hp rhk`t ig t`a pftagt >>
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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Oatwaag 680> fgn 6884, t`hs jfw lfsa wfs axfehgan oyt`raa liurts fgn ajavag munkas. \hx yafrs ic prilaanhgks
jftar =- t`a liepjfhgfgts raquast wfs chgfjjy naghan cir `hsfjjakan iwgars`hp oit` ig t`a pftagt (`a wfs git t`ahgvagtir) fgn t`a lajjs axtrfltan crie `hs raeivan
spjaag (t`a liurt cafran t`ft axtagnhgk priparty rhk`tsti hgljuna irkfgs ir lajjs nasthgan cir nastrulthig wiujn`fva f l`hjjhgk accalt ig eanhlfj rasafrl`).
- `iwavar, t`a pfthagt sullaanan hg `hs raquast cirvhijfthig oy t`a niltir ic `hs pricasshigfj nuthas oalfusat`a p`yshlhfg cfhjan ti hgcire `hs pfthagt foiut t`aaligiehl fgn parsigfj hgtarast `a liujn `fva hgstunyhgk fgn ushgk t`a pfthagts lajjs.
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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^`hs wfs t`a cfeius lfsa bgiwg fs Mi`g
Eiiras lfsa, priofojy t`a chrst `flban efg hg
t`a ohital` `hstiry. Ivar t`a yafrs, t`a shtufthig `fs parlapthojy
l`fgkan fgn giw f prijhcarfthig ic at`hls
lieehttaas, ohiat`hlhsts, ligsagt cires,hgsthtuthigfj ravhaw oifrns, rajhkhius fgn
p`hjisip`hlfj kriups, pijhthlfj pfrthas,
kivareagts fgn hgtargfthigfj hgsthtuthigs try ti
rakujfta t`asa pfrthlujfr flthvhthas w`hl` ligshst
hg t`a lijjalthig, stirfka, prilasshgk, fgn usa ic
`uefg ohijikhlfj sfepjas.
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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Nias t`hs eafg t`ft, jhba hg t`a cfeius Lfgnhna icSijtfhra (f gahk`oiur ic Kagavf hg t`a ijn nfys) fjj hs
cir t`a oast hg t`a oast ic fjj pisshoja wirjns9
Git`hgk hs jass lartfhg fgn ti fgswar t`hs quasthig hg fusacuj wfy, wa giw gaan ti sfy f caw wirns foiut =
- t`a liepjax fgn `atarikagaius lurragt girefthva
crfeawirb ic t`a lijjalthig, stirfka, prilasshgk fgn usaic `uefg ohijikhlfj sfepjas (H)
- t`a urkagt gaan ti efba fvfhjfoja ti slhagthsts fgnprflththigars f bhgn ic prflthlfj efgufj cir lfrryhgk iutt`asa flthvhthas ig t`a ofshs ic liglargs (t`a sphrht ict`a jfws) lieeig ti nhccaragt fgn `atarikagaius rujaslurragtjy hg cirla (HH)
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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- H -
^`a liepjax fgn `atarikagaius lurragt
girefthva crfeawirb w`hl` efy fppjy tit`a lijjalthig, stirfka, prilasshgk, fgn usa ic
`uefg ohijikhlfj sfepja
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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6.6. Hgtargfthigfj rujas6.6.6. Hgtargfthigfj taxts fgn trafthas
688;/4>/4>, A\ - Ivhani - Ligvagthig cir t`aTritalthig ic @uefg _hk`ts fgn Nhkghty ic t`a@uefg Oahgk wht` rakfrn ti t`a Fppjhlfthig icOhijiky fgn Eanhlhga (Ligvagthig piur jf pritalthig nasNrihts na j'@ieea at na jf nhkght na j'tra `uefhg j'kfrn nasfppjhlfthigs na jf ohijikha at na jf enalhga)
688;/66/66, C_ -Tfrhs, QGA\LI - QghvarsfjNaljfrfthig ig t`a @uefg Kagiea fgn @uefg
_hk`ts (Nljfrfthig ughvarsajja sur ja kgiea `uefhg at jas nrihts naj'`ieea)
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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6880/46/6?, C_ -Tfrhs, Liuglhj ic Auripa -FnnhthigfjTritilij ti t`a Ligvagthig cir t`a Tritalthig ic@uefg _hk`ts fgn Nhkghty ic t`a @uefg Oahgk wht`
rakfrn ti t`a Fppjhlfthig ic Ohijiky fgn Eanhlhga, igt`a Tri`hohthig ic Ljighgk @uefg Oahgks (Tritilijafnnhthiggaj jf Ligvagthig piur jf pritalthig nas Nrihts na j'@ieea atna jf nhkght na j'tra `uefhg j'kfrn nas fppjhlfthigs na jf ohijikha at najf enalhga, pirtfgt hgtarnhlthig nu ljigfka n'tras `uefhgs)
?44?/46/?>, C_ -\trfsoiurk, Liuglhj ic Auripa -Fnnhthigfj Tritilij ti t`a Ligvagthig ig @uefg_hk`ts fgn Ohieanhlhga, ig ^rfgspjfgtfthig ic Irkfgsfgn ^hssuas ic @uefg Irhkhg (Tritilija fnnhthiggaj jf
Ligvagthig sur jas Nrihts na j'@ieea at jf Ohienalhga rajfthc jftrfgspjfgtfthig n'irkfgas at na thssus n'irhkhga `uefhga)
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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?44
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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?443/4
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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?441/64/68, C_-Tfrhs, QGA\LI - QghvarsfjNaljfrfthig ig Ohiat`hls fgn @uefg _hk`ts
(Nljfrfthig ughvarsajja sur jf ohit`hqua at jas nrihts na j'`ieea)
?440/41/4?, ^_-Hstfgouj - Naljfrfthig ic Hstfgoujig Irkfg ^rfcchlbhgk fgn ^rfgspjfgt ^iurhse
Tfrthlhpfgts hg t`a Hgtargfthigfj \ueeht ig^rfgspjfgt ^iurhse fgn Irkfg ^rfcchlbhgkligvagan oy ^`a ^rfgspjfgtfthig \ilhaty fgnHgtargfthigfj \ilhaty ic Gap`rijiky hg Hstfgouj,
^urbay, Fprhj
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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?440/66/?;, C_-\trfsoiurk, Liuglhj ic
Auripa -Fnnhthigfj Tritilij ti t`a
Ligvagthig ig @uefg _hk`ts fgn
Ohieanhlhga, liglarghgk Kagathl ^asthgk cir
@afjt` Turpisas (Tritilija fnnhthiggaj jf Ligvagthig sur jas
Nrihts na j@ieea at jf ohienalhga rajfthc fux tasts kgthquas naschgs enhlfjas)
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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6.6.?. Auripafg Qghig ?44>/4
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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6.?. Gfthigfj rujas
Efgy liugtrhas `fva wfgtan ti navajip jakfj
rakujfthig cir ohital`gijiky flthvhthas, out t`asa
rakujfthigs fra cfr crie ughcire ligshstagly ir
oahgk afsy ti hepjaeagt.
Cir axfepja =
\whtzarjfgn
Crfgla
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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6.?.6. Lurragtjy, hg \whtzarjfgn, t`a canarfj rujas t`ft rakujftarasafrl` ig `uefg oahgks axhst igjy hg pfrthfj frafs, wht` slfttaranprivhshigs, w`hl` lfg oa ciugn hg savarfj taxts=
f) rakujfthig ic ljhghlfj trhfjs wht` eanhlhgas fgn eanhlfj prinults _\ 06?.?6 Canarfj Jfw ic 61 Nalaeoar ?444 ig eanhlhgfj prinults
fgn eanhlfj navhlas (Jfw ig ^`arfpauthl Trinults, JT^@)
\_ 06?.?6>.? Irniggfgla ic 6; Iltioar ?446 ig ljhghlfj trhfjs ict`arfpauthl prinults (ILjhg)
o) rakujfthig ic ljhghlfj trhfjs hg trfgspjfgtfthig eanhlhga _\ 064.?6 Canarfj Jfw ic 0 Iltioar ?44> ig t`a trfgspjfgtfthig ic
irkfgs, thssuas fgn lajjs (Jfw ig trfgspjfgtfthig)
l) rakujfthig ic pricasshigfj salraly cir rasafrl` hg eanhlhga fgnpuojhl afjt`
\_
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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Hg \whtzarjfgn, cir t`a eieagt eist ic t`a rakujfthig hsic lfgtigfj liepatagla, kagarfjjy axprassan hg t`a
`afjt` jfws ic afl` Lfgtig. ^`a axfehgfthig ic t`asajilfj jfws s`iws t`ft stftutiry privhshigs lfg vfry kraftjycrie iga lfgtig ti fgit`ar. ^`hs hs priofojy t`a rafsigw`y twi hepirtfgt jakfj wirbs fra lurragtjy oahgk nigaft Ligcanarfthig javaj=
f primalt ic ligsthtuthigfj frthlja ig t`a rasafrl` ig`uefg oahgks, w`hl` whjj feagn t`a \whss Ligsthtuthigt`riuk` fg frthlja 660f agthtjan "_asafrl` ig `uefgoahgks", si fs ti hgljuna fg axtagnan murhsnhlthig cir t`a
Ligcanarfthig ti jakhsjfta hg t`hs fraf2 f primalt ic canarfj jfw ig rasafrl` ig `uefg oahgks,
nashkgan ti liepjaeagt fgn ughcy t`a rakujfthig ic sul`flthvhthas fjj ivar \whtzarjfgn.
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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6.?.?. Hg Crfgla, wa jiva ti prinula jfws ft fg
hgnustrhfj taepi, f sirt ic parefgagt
jakhsjfthva hgcjfthig, wht` taxts w`hl` fra ictag
hgfppjhlfoja ir iosijata oacira t`ay lfg oa
accalthvajy fppjhan.
Hg t`hs liugtry, fppjhlfoja rujas fra fs cijjiws
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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f) Hssuas rajftan ti ohital`gijiky fra lurragtjy hg =
- t`a Jfw Gi. ?44>-044 ic 3 Fukust ?44> (ic w`hl` t`ara hs fg
irhkhgfj varshig fgn fgit`ar feagnan ig ?4 Nalaeoar ?440)
- fgn, cir giw, hts cijjiwhgk fppjhlfthig nalraas = Nlrat g?44>-64?> nu ?0/48/?44>, Nlrat g?441-6? nu ?;/64/?441, Nlrat g?441-
6/?441, Nlrat g?441->?4 nu >/41/?441, Nlrat g?441->>8 nu 4?/40/?441, Nlrat g?443-6?6 nu
43/4?/?443, Nlrat g?443-613< nu 0/6?/?443, Nlrat g?443-63?4 nu
60/6?/?443, Nlrat g?443-6334 nu ??/6?/?443, Nlrat g?443-6336 nu
??/6?/?443, Nlrat g?443-3?3 nu ?8/41/?443, Nlrat g?44;-6664 nu
6;/4;/?44;, Nlrat g?44;-6??4 nu 64/40/?44;, Nlrat g?44;-168 nu
41/4>/?44;, Nlrat g?440-/4?/?448.
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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- HH -
^`a urkagt gaan ti efba fvfhjfoja ti slhagthsts
fgn prflththigars f prflthlfj efgufj cir
lfrryhgk iut flthvhthas rajfthgk ti t`a
lijjalthig, stirfka, prilasshgk, fgn usa ic
`uefg ohijikhlfj sfepjas ig t`a ofshs ic
liglargs lieeig ti `atarikagaius rujas
lurragtjy hg cirla.
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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?.6. Nhcchlujthas
Hg cflt, oayign t`asa hghthfthvas iga priojae raefhgs, wht` savarfjjavajs fgn fspalts=
i Hgtargfthigfj taxts prieujkftan ni git `fva t`a sfea jakfj vfjua, fgnictag fra git flliepfghan oy t`a sfglthig t`ft l`frfltarhzas f jfwruja. ^`ara fra trafthas, kuhnajhgas, ralieeagnfthigs fgnnaljfrfthigs ic kiin hgtagthigs t`ft `fva git t`a sfea ohgnhgk cirla2
i Gfthigfj jakhsjfthig (hc fgy) hs git ughcire, ehsugnarstiin ir
ehsfppjhan fgn lfg lfusa sarhius prflthlfj priojaes cir rasafrl` fgneanhlfj liiparfthig w`hl` tagns ti hgtargfthigfjhza2
i oayign t`a priojaes ic jakhsjfthva liepfthohjhty oatwaag rakhigs fgnliugtrhas, wa eust fjsi tfba hgti ligshnarfthig t`a efgy bhgns iclujturfj fgn rajhkhius fwfragass, w`hl` lartfhgjy lfggit oa hkgiran hcwa wfgt ti sarhiusjy pfrthlhpfta hg t`a hgtargfthigfj eanhlfj fgn
slhagthchl liiparfthig hg f wirjn t`ft hs fgn whjj raefhg l`frfltarhzanoy nhvarshty, fgn w`hl` avaryiga eust raspalt fgn `fs kraft hgtarasttfbhgk hgti flliugt, aspalhfjjy hg parhins ic pijhthlfj fgn hnaijikhlfjtagshigs.
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_asafrl`ars fgn niltirs `fva ti ni
wht` f pjat`irf ic taxts fgnnilueagts ft t`ahr nhspisfj.
Ic liursa, t`ay lfg try ti zhkzfk
oatwaag efgy liepjax stfgnfrns,
prilanuras cir sieatheas
Bfcbfasquafnehghstrfthva parehts,hg irnar ti chgn t`a oast wfy ti
liepjy wht` t`a jfw hg t`ahr flthvhthas.
8/10/2019 Collection, storage, processing, and use of human biological samples: the spirit of the laws, Hachemi Ayad, Geneva 2009
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Lartfhgjy, eat`ins ic jakfj wirb efy priva
usacuj `ara.
Out hs ht rafjjy t`a mio ic niltirs fgn
rasafrl`ars ti agkfka hg t`hs typa ic wirb9
@fva t`ay agiuk` thea ti ni t`hs9 @fva t`ay
avar fccirnan ti `hra jfwyars ti ni t`hs wirboacira efbhgk fgy sfepjhgk9
Niltirs fgn rasafrl`ars mio hs ti cilus t`ahr
fttagthig ig `afjt` fgn rasafrl`, git ti katjist hg t`a jakfj efza t`ft efgy jfwyars fra
strukkjhgk ti ugnarstfgn t`aesajvas.
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HH.?. Trflthlfj sijuthig
Tagnhgk f `ypit`athlfj wirjn jakhsjfthig ir lina
ic hgtargfthigfj prflthla, ljafr fgn ughcire hgsul` sagshthva fraf fs t`a lijjalthig, stirfka,prilasshgk, fgn usa ic `uefg ohijikhlfj sfepjas,ht efy oa vary usacuj ti lrafta fgn navajip f bhgnic prilanuras `fgnoiib t`ft wiujn privhna fehgheue ic jakfj lartfhgty hg t`a flthvhty icniltirs fgn rasafrl`ars.
Ht hs pralhsajy t`a primalt t`ft H wiujn jhba ti lfrryiut hg t`a ligtaxt ic ey lijjfoirfthig wht` t`a
KCEA_.
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^`a feiugt ic wirb hs hepirtfgt out git hgsureiugtfoja= fjj
taxts eira ir jass hgtagnan ti kivarg t`a lijjalthig ic eftarhfjs
ic `uefg irhkhg `fva f gueoar ic lieeig liglargs=
Tfthagt ligsagt wht` cujj hgcirefthig,
@hk` qufjhty stirfka fgn prilasshgk si fs ti agsura `hk`
stfgnfrn ic qufjhty fgn sfcaty ic thssuas fgn lajjs,
Qsa (hg t`a axljushva hgtarast ic t`a pfthagt, cir purpisas ic
slhagthchl rasafrl` fgn axl`fgka flriss t`a slhagthchl
lieeughty),
^`a lignhthigs cir lieearlhfjhzfthig ic t`a rasujts (rasujts ic
stunhas ir p`freflauthlfj prinults narhvan crie `uefglajjs).
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^`asa lieeig liglargs lfg oa lfjjan "^`a
\phrht ic Jfws", hg racaragla ti t`a efmir wirb
ic Eigtasquhau, puojhs`an hg Kagavf hg 6;>0,
fctar ?4 yafrs ic wirb.
Out t`hs hs igjy fg fjjushva axprasshig= H'e git
Eigtasquhau fgn H `ipa t`a iutliea ic ey
primalt whjj oa eira quhlbjy fvfhjfoja ti t`a
prflththigars fgn rasafrl`ars w`i gaan ht.
^`fgb yiu cir yiur bhgn fttagthig.