schliessen

Filtern

 

Bibliotheken

Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents

BackgroundThe rise in genomic and biobanking research worldwide has led to the development of different informed consent models for use in such research. This study analyses consent documents used by investigators in the H3Africa (Human Heredity and Health in Africa) Consortium.MethodsA qualitative... Full description

Journal Title: Journal of Medical Ethics 2016-02, Vol.42 (2), p.132-137
Main Author: Munung, Nchangwi Syntia
Other Authors: Marshall, Patricia , Campbell, Megan , Littler, Katherine , Masiye, Francis , Ouwe-Missi-Oukem-Boyer, Odile , Seeley, Janet , Stein, D J , Tindana, Paulina , de Vries, Jantina
Format: Electronic Article Electronic Article
Language: English
Subjects:
Quelle: Alma/SFX Local Collection
Publisher: England: Institute of Medical Ethics and BMJ Publishing Group Ltd
ID: ISSN: 0306-6800
Link: https://www.ncbi.nlm.nih.gov/pubmed/26644426
Zum Text:
SendSend as email Add to Book BagAdd to Book Bag
Staff View
recordid: cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_4752624
title: Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents
format: Article
creator:
  • Munung, Nchangwi Syntia
  • Marshall, Patricia
  • Campbell, Megan
  • Littler, Katherine
  • Masiye, Francis
  • Ouwe-Missi-Oukem-Boyer, Odile
  • Seeley, Janet
  • Stein, D J
  • Tindana, Paulina
  • de Vries, Jantina
subjects:
  • 1506
  • Africa
  • African Continental Ancestry Group - genetics
  • Analysis
  • Bioethics
  • Biological specimen banks
  • Biological Specimen Banks - ethics
  • Community-Based Participatory Research - ethics
  • Consent forms
  • Consent Forms - ethics
  • Ethical aspects
  • Ethics committees
  • Genetic inheritance
  • Genetic research
  • Genetic Research - ethics
  • Genetic Research - legislation & jurisprudence
  • Genomics
  • humanities
  • Humans
  • Information Dissemination - ethics
  • Information Dissemination - legislation & jurisprudence
  • Information sharing
  • Informed Consent
  • Informed consent (Medical law)
  • Informed Consent - ethics
  • Informed Consent - legislation & jurisprudence
  • Medical genetics
  • Medical research
  • Research Ethics
ispartof: Journal of Medical Ethics, 2016-02, Vol.42 (2), p.132-137
description: BackgroundThe rise in genomic and biobanking research worldwide has led to the development of different informed consent models for use in such research. This study analyses consent documents used by investigators in the H3Africa (Human Heredity and Health in Africa) Consortium.MethodsA qualitative method for text analysis was used to analyse consent documents used in the collection of samples and data in H3Africa projects. Thematic domains included type of consent model, explanations of genetics/genomics, data sharing and feedback of test results.ResultsInformed consent documents for 13 of the 19 H3Africa projects were analysed. Seven projects used broad consent, five projects used tiered consent and one used specific consent. Genetics was mostly explained in terms of inherited characteristics, heredity and health, genes and disease causation, or disease susceptibility. Only one project made provisions for the feedback of individual genetic results.ConclusionH3Africa research makes use of three consent models—specific, tiered and broad consent. We outlined different strategies used by H3Africa investigators to explain concepts in genomics to potential research participants. To further ensure that the decision to participate in genomic research is informed and meaningful, we recommend that innovative approaches to the informed consent process be developed, preferably in consultation with research participants, research ethics committees and researchers in Africa.
language: eng
source: Alma/SFX Local Collection
identifier: ISSN: 0306-6800
fulltext: fulltext
issn:
  • 0306-6800
  • 1473-4257
url: Link


@attributes
NO1
SEARCH_ENGINEprimo_central_multiple_fe
SEARCH_ENGINE_TYPEPrimo Central Search Engine
RANK2.5150335
LOCALfalse
PrimoNMBib
record
control
sourceidgale_pubme
recordidTN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_4752624
sourceformatXML
sourcesystemPC
galeidA448568334
jstor_id44014320
sourcerecordidA448568334
originalsourceidFETCH-LOGICAL-1633t-246625576c2a84d9149272bff9325b8270b3cf359cd527361faa991275c66e013
addsrcrecordideNqNkk2P0zAQhiMEYsvCT1gUiQscsvjbCYeVqgp2kSp6gbPlOOPUVWoXOwH23-OSpaKIA8khjud5Z-yZtyiuMLrGmIq3e-hg3DqTKoIwrzAishGPigVmklaMcPm4WCCKRCVqhC6KZyntUH5I3TwtLogQjDEiFkW7aUftvPN96bwNMactTfAJ_Fjm37IHH_a5ShkhgY5mm7FyaaMz-l2pvR7uk0tlsOUdnXdP6i6YaZ8X6XnxxOohwYuH72Xx5cP7z6u7ar25_bharissKB0rwoQgnEthiK5Z12DWEElaaxtKeFsTiVpqLOWN6TiRVGCrddNgIrkRAhCml8XNnPcwtfkaJteOelCH6PY63qugnTqPeLdVffimmOREEJYTfJoThAN47SKcaTsPo-qgmw7qu1UIYQWUdwJJ2WmwTBBbc641CKiN1AaoyAlfP5wohq8TpFHtXTIwDNpDmJLCUqAGMcp5Rl_9he7CFHN_j1SNEceMHk94PVO9HkAdB5YvYvLbQR5S8GBd3l8yVnNR01-CN2eCzIzwY-z1lJKqb9fnbPUv1oRhgB5UntVqc87zmTcxpBTBntqFkTp6VJ08qo4eVbNHs-7ln3M6qX6bMgNXM7BLY4inOGMoN4GgHEdzvN3v_rPmT8Dj-xg
sourcetypeOpen Access Repository
isCDItrue
recordtypearticle
pqid1781051434
display
typearticle
titleObtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents
sourceAlma/SFX Local Collection
creatorMunung, Nchangwi Syntia ; Marshall, Patricia ; Campbell, Megan ; Littler, Katherine ; Masiye, Francis ; Ouwe-Missi-Oukem-Boyer, Odile ; Seeley, Janet ; Stein, D J ; Tindana, Paulina ; de Vries, Jantina
creatorcontribMunung, Nchangwi Syntia ; Marshall, Patricia ; Campbell, Megan ; Littler, Katherine ; Masiye, Francis ; Ouwe-Missi-Oukem-Boyer, Odile ; Seeley, Janet ; Stein, D J ; Tindana, Paulina ; de Vries, Jantina
descriptionBackgroundThe rise in genomic and biobanking research worldwide has led to the development of different informed consent models for use in such research. This study analyses consent documents used by investigators in the H3Africa (Human Heredity and Health in Africa) Consortium.MethodsA qualitative method for text analysis was used to analyse consent documents used in the collection of samples and data in H3Africa projects. Thematic domains included type of consent model, explanations of genetics/genomics, data sharing and feedback of test results.ResultsInformed consent documents for 13 of the 19 H3Africa projects were analysed. Seven projects used broad consent, five projects used tiered consent and one used specific consent. Genetics was mostly explained in terms of inherited characteristics, heredity and health, genes and disease causation, or disease susceptibility. Only one project made provisions for the feedback of individual genetic results.ConclusionH3Africa research makes use of three consent models—specific, tiered and broad consent. We outlined different strategies used by H3Africa investigators to explain concepts in genomics to potential research participants. To further ensure that the decision to participate in genomic research is informed and meaningful, we recommend that innovative approaches to the informed consent process be developed, preferably in consultation with research participants, research ethics committees and researchers in Africa.
identifier
0ISSN: 0306-6800
1EISSN: 1473-4257
2DOI: 10.1136/medethics-2015-102796
3PMID: 26644426
4CODEN: JMETDR
languageeng
publisherEngland: Institute of Medical Ethics and BMJ Publishing Group Ltd
subject1506 ; Africa ; African Continental Ancestry Group - genetics ; Analysis ; Bioethics ; Biological specimen banks ; Biological Specimen Banks - ethics ; Community-Based Participatory Research - ethics ; Consent forms ; Consent Forms - ethics ; Ethical aspects ; Ethics committees ; Genetic inheritance ; Genetic research ; Genetic Research - ethics ; Genetic Research - legislation & jurisprudence ; Genomics ; humanities ; Humans ; Information Dissemination - ethics ; Information Dissemination - legislation & jurisprudence ; Information sharing ; Informed Consent ; Informed consent (Medical law) ; Informed Consent - ethics ; Informed Consent - legislation & jurisprudence ; Medical genetics ; Medical research ; Research Ethics
ispartofJournal of Medical Ethics, 2016-02, Vol.42 (2), p.132-137
rights
0Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing
12016 BMJ Publishing Group Ltd and the Institute of Medical Ethics
2Copyright: 2016 Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing
3Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/ 2016
lds50peer_reviewed
oafree_for_read
citesFETCH-LOGICAL-1633t-246625576c2a84d9149272bff9325b8270b3cf359cd527361faa991275c66e013
links
openurl$$Topenurl_article
openurlfulltext$$Topenurlfull_article
thumbnail$$Usyndetics_thumb_exl
backlink$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/26644426$$D View this record in MEDLINE/PubMed
search
creatorcontrib
0Munung, Nchangwi Syntia
1Marshall, Patricia
2Campbell, Megan
3Littler, Katherine
4Masiye, Francis
5Ouwe-Missi-Oukem-Boyer, Odile
6Seeley, Janet
7Stein, D J
8Tindana, Paulina
9de Vries, Jantina
title
0Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents
1Journal of Medical Ethics
addtitleJ Med Ethics
descriptionBackgroundThe rise in genomic and biobanking research worldwide has led to the development of different informed consent models for use in such research. This study analyses consent documents used by investigators in the H3Africa (Human Heredity and Health in Africa) Consortium.MethodsA qualitative method for text analysis was used to analyse consent documents used in the collection of samples and data in H3Africa projects. Thematic domains included type of consent model, explanations of genetics/genomics, data sharing and feedback of test results.ResultsInformed consent documents for 13 of the 19 H3Africa projects were analysed. Seven projects used broad consent, five projects used tiered consent and one used specific consent. Genetics was mostly explained in terms of inherited characteristics, heredity and health, genes and disease causation, or disease susceptibility. Only one project made provisions for the feedback of individual genetic results.ConclusionH3Africa research makes use of three consent models—specific, tiered and broad consent. We outlined different strategies used by H3Africa investigators to explain concepts in genomics to potential research participants. To further ensure that the decision to participate in genomic research is informed and meaningful, we recommend that innovative approaches to the informed consent process be developed, preferably in consultation with research participants, research ethics committees and researchers in Africa.
subject
01506
1Africa
2African Continental Ancestry Group - genetics
3Analysis
4Bioethics
5Biological specimen banks
6Biological Specimen Banks - ethics
7Community-Based Participatory Research - ethics
8Consent forms
9Consent Forms - ethics
10Ethical aspects
11Ethics committees
12Genetic inheritance
13Genetic research
14Genetic Research - ethics
15Genetic Research - legislation & jurisprudence
16Genomics
17humanities
18Humans
19Information Dissemination - ethics
20Information Dissemination - legislation & jurisprudence
21Information sharing
22Informed Consent
23Informed consent (Medical law)
24Informed Consent - ethics
25Informed Consent - legislation & jurisprudence
26Medical genetics
27Medical research
28Research Ethics
issn
00306-6800
11473-4257
fulltexttrue
rsrctypearticle
creationdate2016
recordtypearticle
recordideNqNkk2P0zAQhiMEYsvCT1gUiQscsvjbCYeVqgp2kSp6gbPlOOPUVWoXOwH23-OSpaKIA8khjud5Z-yZtyiuMLrGmIq3e-hg3DqTKoIwrzAishGPigVmklaMcPm4WCCKRCVqhC6KZyntUH5I3TwtLogQjDEiFkW7aUftvPN96bwNMactTfAJ_Fjm37IHH_a5ShkhgY5mm7FyaaMz-l2pvR7uk0tlsOUdnXdP6i6YaZ8X6XnxxOohwYuH72Xx5cP7z6u7ar25_bharissKB0rwoQgnEthiK5Z12DWEElaaxtKeFsTiVpqLOWN6TiRVGCrddNgIrkRAhCml8XNnPcwtfkaJteOelCH6PY63qugnTqPeLdVffimmOREEJYTfJoThAN47SKcaTsPo-qgmw7qu1UIYQWUdwJJ2WmwTBBbc641CKiN1AaoyAlfP5wohq8TpFHtXTIwDNpDmJLCUqAGMcp5Rl_9he7CFHN_j1SNEceMHk94PVO9HkAdB5YvYvLbQR5S8GBd3l8yVnNR01-CN2eCzIzwY-z1lJKqb9fnbPUv1oRhgB5UntVqc87zmTcxpBTBntqFkTp6VJ08qo4eVbNHs-7ln3M6qX6bMgNXM7BLY4inOGMoN4GgHEdzvN3v_rPmT8Dj-xg
startdate201602
enddate201602
creator
0Munung, Nchangwi Syntia
1Marshall, Patricia
2Campbell, Megan
3Littler, Katherine
4Masiye, Francis
5Ouwe-Missi-Oukem-Boyer, Odile
6Seeley, Janet
7Stein, D J
8Tindana, Paulina
9de Vries, Jantina
general
0Institute of Medical Ethics and BMJ Publishing Group Ltd
1BMJ Publishing Group Ltd
2BMJ Publishing Group LTD
3BMJ Publishing Group
scope
09YT
1ACMMV
2CGR
3CUY
4CVF
5ECM
6EIF
7NPM
8AAYXX
9CITATION
10BSHEE
110-V
123V.
137RV
147X7
157XB
1688E
1788I
1888J
198AF
208FI
218FJ
228FK
238G5
24AABKS
25ABSDQ
26ABUWG
27ALSLI
28AVQMV
29AZQEC
30BENPR
31BTHHO
32DWQXO
33FYUFA
34GHDGH
35GNUQQ
36GUQSH
37HCIFZ
38K50
39K9.
40KB0
41M0S
42M1D
43M1P
44M2O
45M2P
46M2R
47MBDVC
48NAPCQ
49PADUT
50PQEST
51PQQKQ
52PQUKI
53PRINS
54Q9U
557X8
56BOBZL
57CLFQK
585PM
sort
creationdate201602
titleObtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents
authorMunung, Nchangwi Syntia ; Marshall, Patricia ; Campbell, Megan ; Littler, Katherine ; Masiye, Francis ; Ouwe-Missi-Oukem-Boyer, Odile ; Seeley, Janet ; Stein, D J ; Tindana, Paulina ; de Vries, Jantina
facets
frbrtype5
frbrgroupidcdi_FETCH-LOGICAL-1633t-246625576c2a84d9149272bff9325b8270b3cf359cd527361faa991275c66e013
rsrctypearticles
prefilterarticles
languageeng
creationdate2016
topic
01506
1Africa
2African Continental Ancestry Group - genetics
3Analysis
4Bioethics
5Biological specimen banks
6Biological Specimen Banks - ethics
7Community-Based Participatory Research - ethics
8Consent forms
9Consent Forms - ethics
10Ethical aspects
11Ethics committees
12Genetic inheritance
13Genetic research
14Genetic Research - ethics
15Genetic Research - legislation & jurisprudence
16Genomics
17humanities
18Humans
19Information Dissemination - ethics
20Information Dissemination - legislation & jurisprudence
21Information sharing
22Informed Consent
23Informed consent (Medical law)
24Informed Consent - ethics
25Informed Consent - legislation & jurisprudence
26Medical genetics
27Medical research
28Research Ethics
toplevel
0peer_reviewed
1online_resources
creatorcontrib
0Munung, Nchangwi Syntia
1Marshall, Patricia
2Campbell, Megan
3Littler, Katherine
4Masiye, Francis
5Ouwe-Missi-Oukem-Boyer, Odile
6Seeley, Janet
7Stein, D J
8Tindana, Paulina
9de Vries, Jantina
collection
0BMJ Open Access Journals
1BMJ Journals:Open Access
2Medline
3MEDLINE
4MEDLINE (Ovid)
5MEDLINE
6MEDLINE
7PubMed
8CrossRef
9Academic OneFile (A&I only)
10ProQuest Social Sciences Premium Collection
11ProQuest Central (Corporate)
12Nursing & Allied Health Database
13Health & Medical Collection
14ProQuest Central (purchase pre-March 2016)
15Medical Database (Alumni Edition)
16Science Database (Alumni Edition)
17Social Science Database (Alumni Edition)
18STEM Database
19Hospital Premium Collection
20Hospital Premium Collection (Alumni Edition)
21ProQuest Central (Alumni) (purchase pre-March 2016)
22Research Library (Alumni Edition)
23Philosophy Collection
24Philosophy Database
25ProQuest Central (Alumni Edition)
26Social Science Premium Collection
27Arts Premium Collection
28ProQuest Central Essentials
29ProQuest Central
30BMJ Journals
31ProQuest Central Korea
32Health Research Premium Collection
33Health Research Premium Collection (Alumni)
34ProQuest Central Student
35Research Library Prep
36SciTech Premium Collection
37Art, Design & Architecture Collection
38ProQuest Health & Medical Complete (Alumni)
39Nursing & Allied Health Database (Alumni Edition)
40Health & Medical Collection (Alumni Edition)
41Arts & Humanities Database
42Medical Database
43Research Library
44Science Database
45Social Science Database
46Research Library (Corporate)
47Nursing & Allied Health Premium
48Research Library China
49ProQuest One Academic Eastern Edition
50ProQuest One Academic
51ProQuest One Academic UKI Edition
52ProQuest Central China
53ProQuest Central Basic
54MEDLINE - Academic
55OpenAIRE (Open Access)
56OpenAIRE
57PubMed Central (Full Participant titles)
jtitleJournal of Medical Ethics
delivery
delcategoryRemote Search Resource
fulltextfulltext
addata
au
0Munung, Nchangwi Syntia
1Marshall, Patricia
2Campbell, Megan
3Littler, Katherine
4Masiye, Francis
5Ouwe-Missi-Oukem-Boyer, Odile
6Seeley, Janet
7Stein, D J
8Tindana, Paulina
9de Vries, Jantina
formatjournal
genrearticle
ristypeJOUR
atitleObtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents
jtitleJournal of Medical Ethics
addtitleJ Med Ethics
seriestitlePaper
date2016-02
risdate2016
volume42
issue2
spage132
epage137
pages132-137
issn0306-6800
eissn1473-4257
codenJMETDR
abstractBackgroundThe rise in genomic and biobanking research worldwide has led to the development of different informed consent models for use in such research. This study analyses consent documents used by investigators in the H3Africa (Human Heredity and Health in Africa) Consortium.MethodsA qualitative method for text analysis was used to analyse consent documents used in the collection of samples and data in H3Africa projects. Thematic domains included type of consent model, explanations of genetics/genomics, data sharing and feedback of test results.ResultsInformed consent documents for 13 of the 19 H3Africa projects were analysed. Seven projects used broad consent, five projects used tiered consent and one used specific consent. Genetics was mostly explained in terms of inherited characteristics, heredity and health, genes and disease causation, or disease susceptibility. Only one project made provisions for the feedback of individual genetic results.ConclusionH3Africa research makes use of three consent models—specific, tiered and broad consent. We outlined different strategies used by H3Africa investigators to explain concepts in genomics to potential research participants. To further ensure that the decision to participate in genomic research is informed and meaningful, we recommend that innovative approaches to the informed consent process be developed, preferably in consultation with research participants, research ethics committees and researchers in Africa.
copEngland
pubInstitute of Medical Ethics and BMJ Publishing Group Ltd
pmid26644426
doi10.1136/medethics-2015-102796
tpages6
oafree_for_read