Ethical issues and practical barriers in internet-based suicide prevention research: a review and investigator survey.
Identifieur interne : 000421 ( Main/Exploration ); précédent : 000420; suivant : 000422Ethical issues and practical barriers in internet-based suicide prevention research: a review and investigator survey.
Auteurs : Eleanor Bailey [Australie] ; Charlotte Mühlmann [Danemark] ; Simon Rice [Australie] ; Maja Nedeljkovic [Australie] ; Mario Alvarez-Jimenez [Australie] ; Lasse Sander [Allemagne] ; Alison L. Calear [Australie] ; Philip J. Batterham [Australie] ; Jo Robinson [Australie]Source :
- BMC medical ethics [ 1472-6939 ] ; 2020.
Abstract
BACKGROUND
People who are at elevated risk of suicide stand to benefit from internet-based interventions; however, research in this area is likely impacted by a range of ethical and practical challenges. The aim of this study was to examine the ethical issues and practical barriers associated with clinical studies of internet-based interventions for suicide prevention.
METHOD
This was a mixed-methods study involving two phases. First, a systematic search was conducted to identify studies evaluating internet-based interventions for people at risk of suicide, and information pertaining to safety protocols and exclusion criteria was extracted. Second, investigators on the included studies were invited to complete an online survey comprising open-ended and forced-choice responses. Quantitative and qualitative methods were used to analyse the data.
RESULTS
The literature search identified 18 eligible studies, of which three excluded participants based on severity of suicide risk. Half of the 15 suicide researchers who participated in the survey had experienced problems obtaining ethics approval, and none had encountered adverse events attributed to their intervention. Survey respondents noted the difficulty of managing risk in online environments and the limitations associated with implementing safety protocols, although some also reported increased confidence resulting from the ethical review process. Respondents recommended researchers pursue a collaborative relationship with their research ethics committees.
CONCLUSION
There is a balance to be achieved between the need to minimise the risk of adverse events whilst also ensuring interventions are being validated on populations who may be most likely to use and benefit from them (i.e., those who prefer anonymity). Further research is required to obtain the views of research ethics committees and research participants on these issues. Dialogue between researchers and ethics committees is necessary to address the need to ensure safety while also advancing the timely development of effective interventions in this critical area.
DOI: 10.1186/s12910-020-00479-1
PubMed: 32404098
PubMed Central: PMC7222514
Affiliations:
- Allemagne, Australie, Danemark
- Bade-Wurtemberg, District de Fribourg-en-Brisgau, Hovedstaden, Victoria (État)
- Copenhague, Fribourg-en-Brisgau, Melbourne
- Université de Melbourne
Links toward previous steps (curation, corpus...)
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Calear</name><affiliation wicri:level="1"><nlm:affiliation>Centre for Mental Health Research, Research School of Population Health, The Australian National University, Canberra, ACT, 2061, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Centre for Mental Health Research, Research School of Population Health, The Australian National University, Canberra, ACT, 2061</wicri:regionArea><wicri:noRegion>2061</wicri:noRegion></affiliation></author><author><name sortKey="Batterham, Philip J" sort="Batterham, Philip J" uniqKey="Batterham P" first="Philip J" last="Batterham">Philip J. Batterham</name><affiliation wicri:level="1"><nlm:affiliation>Centre for Mental Health Research, Research School of Population Health, The Australian National University, Canberra, ACT, 2061, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Centre for Mental Health Research, Research School of Population Health, The Australian National University, Canberra, ACT, 2061</wicri:regionArea><wicri:noRegion>2061</wicri:noRegion></affiliation></author><author><name sortKey="Robinson, Jo" sort="Robinson, Jo" uniqKey="Robinson J" first="Jo" last="Robinson">Jo Robinson</name><affiliation wicri:level="1"><nlm:affiliation>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052</wicri:regionArea><wicri:noRegion>3052</wicri:noRegion></affiliation><affiliation wicri:level="4"><nlm:affiliation>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052</wicri:regionArea><orgName type="university">Université de Melbourne</orgName><placeName><settlement type="city">Melbourne</settlement><region type="état">Victoria (État)</region></placeName></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2020">2020</date><idno type="RBID">pubmed:32404098</idno><idno type="pmid">32404098</idno><idno type="doi">10.1186/s12910-020-00479-1</idno><idno type="pmc">PMC7222514</idno><idno type="wicri:Area/Main/Corpus">000303</idno><idno type="wicri:explorRef" wicri:stream="Main" wicri:step="Corpus" wicri:corpus="PubMed">000303</idno><idno type="wicri:Area/Main/Curation">000303</idno><idno type="wicri:explorRef" wicri:stream="Main" wicri:step="Curation">000303</idno><idno type="wicri:Area/Main/Exploration">000303</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Ethical issues and practical barriers in internet-based suicide prevention research: a review and investigator survey.</title><author><name sortKey="Bailey, Eleanor" sort="Bailey, Eleanor" uniqKey="Bailey E" first="Eleanor" last="Bailey">Eleanor Bailey</name><affiliation wicri:level="1"><nlm:affiliation>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052, Australia. eleanor.bailey@orygen.org.au.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052</wicri:regionArea><wicri:noRegion>3052</wicri:noRegion></affiliation><affiliation wicri:level="4"><nlm:affiliation>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052, Australia. eleanor.bailey@orygen.org.au.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052</wicri:regionArea><orgName type="university">Université de Melbourne</orgName><placeName><settlement type="city">Melbourne</settlement><region type="état">Victoria (État)</region></placeName></affiliation><affiliation wicri:level="1"><nlm:affiliation>Centre for Mental Health, Swinburne University of Technology, John St, Hawthorn, VIC, 3122, Australia. eleanor.bailey@orygen.org.au.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Centre for Mental Health, Swinburne University of Technology, John St, Hawthorn, VIC, 3122</wicri:regionArea><wicri:noRegion>3122</wicri:noRegion></affiliation></author><author><name sortKey="Muhlmann, Charlotte" sort="Muhlmann, Charlotte" uniqKey="Muhlmann C" first="Charlotte" last="Mühlmann">Charlotte Mühlmann</name><affiliation wicri:level="1"><nlm:affiliation>Danish Research Institute for Suicide Prevention, Mental Health Centre Copenhagen, Gentofte Hospitalsvej 15, 4. Sal, 2900, Hellerup, Denmark.</nlm:affiliation><country xml:lang="fr">Danemark</country><wicri:regionArea>Danish Research Institute for Suicide Prevention, Mental Health Centre Copenhagen, Gentofte Hospitalsvej 15, 4. Sal, 2900, Hellerup</wicri:regionArea><wicri:noRegion>Hellerup</wicri:noRegion></affiliation><affiliation wicri:level="3"><nlm:affiliation>University of Copenhagen, Nørregade 10, 1165, København, Denmark.</nlm:affiliation><country xml:lang="fr">Danemark</country><wicri:regionArea>University of Copenhagen, Nørregade 10, 1165, København</wicri:regionArea><placeName><settlement type="city">Copenhague</settlement><region type="région" nuts="2">Hovedstaden</region></placeName></affiliation></author><author><name sortKey="Rice, Simon" sort="Rice, Simon" uniqKey="Rice S" first="Simon" last="Rice">Simon Rice</name><affiliation wicri:level="1"><nlm:affiliation>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052</wicri:regionArea><wicri:noRegion>3052</wicri:noRegion></affiliation><affiliation wicri:level="4"><nlm:affiliation>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052</wicri:regionArea><orgName type="university">Université de Melbourne</orgName><placeName><settlement type="city">Melbourne</settlement><region type="état">Victoria (État)</region></placeName></affiliation></author><author><name sortKey="Nedeljkovic, Maja" sort="Nedeljkovic, Maja" uniqKey="Nedeljkovic M" first="Maja" last="Nedeljkovic">Maja Nedeljkovic</name><affiliation wicri:level="1"><nlm:affiliation>Centre for Mental Health, Swinburne University of Technology, John St, Hawthorn, VIC, 3122, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Centre for Mental Health, Swinburne University of Technology, John St, Hawthorn, VIC, 3122</wicri:regionArea><wicri:noRegion>3122</wicri:noRegion></affiliation></author><author><name sortKey="Alvarez Jimenez, Mario" sort="Alvarez Jimenez, Mario" uniqKey="Alvarez Jimenez M" first="Mario" last="Alvarez-Jimenez">Mario Alvarez-Jimenez</name><affiliation wicri:level="1"><nlm:affiliation>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052</wicri:regionArea><wicri:noRegion>3052</wicri:noRegion></affiliation><affiliation wicri:level="4"><nlm:affiliation>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052</wicri:regionArea><orgName type="university">Université de Melbourne</orgName><placeName><settlement type="city">Melbourne</settlement><region type="état">Victoria (État)</region></placeName></affiliation></author><author><name sortKey="Sander, Lasse" sort="Sander, Lasse" uniqKey="Sander L" first="Lasse" last="Sander">Lasse Sander</name><affiliation wicri:level="3"><nlm:affiliation>Department of Rehabilitation Psychology and Psychotherapy, Albert-Ludwigs-University Freiburg, Engelbergerstr. 41, D-79085, Freiburg, Germany.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Rehabilitation Psychology and Psychotherapy, Albert-Ludwigs-University Freiburg, Engelbergerstr. 41, D-79085, Freiburg</wicri:regionArea><placeName><region type="land" nuts="1">Bade-Wurtemberg</region><region type="district" nuts="2">District de Fribourg-en-Brisgau</region><settlement type="city">Fribourg-en-Brisgau</settlement></placeName></affiliation></author><author><name sortKey="Calear, Alison L" sort="Calear, Alison L" uniqKey="Calear A" first="Alison L" last="Calear">Alison L. Calear</name><affiliation wicri:level="1"><nlm:affiliation>Centre for Mental Health Research, Research School of Population Health, The Australian National University, Canberra, ACT, 2061, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Centre for Mental Health Research, Research School of Population Health, The Australian National University, Canberra, ACT, 2061</wicri:regionArea><wicri:noRegion>2061</wicri:noRegion></affiliation></author><author><name sortKey="Batterham, Philip J" sort="Batterham, Philip J" uniqKey="Batterham P" first="Philip J" last="Batterham">Philip J. Batterham</name><affiliation wicri:level="1"><nlm:affiliation>Centre for Mental Health Research, Research School of Population Health, The Australian National University, Canberra, ACT, 2061, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Centre for Mental Health Research, Research School of Population Health, The Australian National University, Canberra, ACT, 2061</wicri:regionArea><wicri:noRegion>2061</wicri:noRegion></affiliation></author><author><name sortKey="Robinson, Jo" sort="Robinson, Jo" uniqKey="Robinson J" first="Jo" last="Robinson">Jo Robinson</name><affiliation wicri:level="1"><nlm:affiliation>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052</wicri:regionArea><wicri:noRegion>3052</wicri:noRegion></affiliation><affiliation wicri:level="4"><nlm:affiliation>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052</wicri:regionArea><orgName type="university">Université de Melbourne</orgName><placeName><settlement type="city">Melbourne</settlement><region type="état">Victoria (État)</region></placeName></affiliation></author></analytic><series><title level="j">BMC medical ethics</title><idno type="eISSN">1472-6939</idno><imprint><date when="2020" type="published">2020</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p><b>BACKGROUND</b></p><p>People who are at elevated risk of suicide stand to benefit from internet-based interventions; however, research in this area is likely impacted by a range of ethical and practical challenges. The aim of this study was to examine the ethical issues and practical barriers associated with clinical studies of internet-based interventions for suicide prevention.</p></div><div type="abstract" xml:lang="en"><p><b>METHOD</b></p><p>This was a mixed-methods study involving two phases. First, a systematic search was conducted to identify studies evaluating internet-based interventions for people at risk of suicide, and information pertaining to safety protocols and exclusion criteria was extracted. Second, investigators on the included studies were invited to complete an online survey comprising open-ended and forced-choice responses. Quantitative and qualitative methods were used to analyse the data.</p></div><div type="abstract" xml:lang="en"><p><b>RESULTS</b></p><p>The literature search identified 18 eligible studies, of which three excluded participants based on severity of suicide risk. Half of the 15 suicide researchers who participated in the survey had experienced problems obtaining ethics approval, and none had encountered adverse events attributed to their intervention. Survey respondents noted the difficulty of managing risk in online environments and the limitations associated with implementing safety protocols, although some also reported increased confidence resulting from the ethical review process. Respondents recommended researchers pursue a collaborative relationship with their research ethics committees.</p></div><div type="abstract" xml:lang="en"><p><b>CONCLUSION</b></p><p>There is a balance to be achieved between the need to minimise the risk of adverse events whilst also ensuring interventions are being validated on populations who may be most likely to use and benefit from them (i.e., those who prefer anonymity). Further research is required to obtain the views of research ethics committees and research participants on these issues. Dialogue between researchers and ethics committees is necessary to address the need to ensure safety while also advancing the timely development of effective interventions in this critical area.</p></div></front></TEI><pubmed><MedlineCitation Status="In-Process" Owner="NLM"><PMID Version="1">32404098</PMID><DateRevised><Year>2020</Year><Month>08</Month><Day>31</Day></DateRevised><Article PubModel="Electronic"><Journal><ISSN IssnType="Electronic">1472-6939</ISSN><JournalIssue CitedMedium="Internet"><Volume>21</Volume><Issue>1</Issue><PubDate><Year>2020</Year><Month>05</Month><Day>13</Day></PubDate></JournalIssue><Title>BMC medical ethics</Title><ISOAbbreviation>BMC Med Ethics</ISOAbbreviation></Journal><ArticleTitle>Ethical issues and practical barriers in internet-based suicide prevention research: a review and investigator survey.</ArticleTitle><Pagination><MedlinePgn>37</MedlinePgn></Pagination><ELocationID EIdType="doi" ValidYN="Y">10.1186/s12910-020-00479-1</ELocationID><Abstract><AbstractText Label="BACKGROUND">People who are at elevated risk of suicide stand to benefit from internet-based interventions; however, research in this area is likely impacted by a range of ethical and practical challenges. The aim of this study was to examine the ethical issues and practical barriers associated with clinical studies of internet-based interventions for suicide prevention.</AbstractText><AbstractText Label="METHOD">This was a mixed-methods study involving two phases. First, a systematic search was conducted to identify studies evaluating internet-based interventions for people at risk of suicide, and information pertaining to safety protocols and exclusion criteria was extracted. Second, investigators on the included studies were invited to complete an online survey comprising open-ended and forced-choice responses. Quantitative and qualitative methods were used to analyse the data.</AbstractText><AbstractText Label="RESULTS">The literature search identified 18 eligible studies, of which three excluded participants based on severity of suicide risk. Half of the 15 suicide researchers who participated in the survey had experienced problems obtaining ethics approval, and none had encountered adverse events attributed to their intervention. Survey respondents noted the difficulty of managing risk in online environments and the limitations associated with implementing safety protocols, although some also reported increased confidence resulting from the ethical review process. Respondents recommended researchers pursue a collaborative relationship with their research ethics committees.</AbstractText><AbstractText Label="CONCLUSION">There is a balance to be achieved between the need to minimise the risk of adverse events whilst also ensuring interventions are being validated on populations who may be most likely to use and benefit from them (i.e., those who prefer anonymity). Further research is required to obtain the views of research ethics committees and research participants on these issues. Dialogue between researchers and ethics committees is necessary to address the need to ensure safety while also advancing the timely development of effective interventions in this critical area.</AbstractText></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Bailey</LastName><ForeName>Eleanor</ForeName><Initials>E</Initials><Identifier Source="ORCID">0000-0003-4918-1618</Identifier><AffiliationInfo><Affiliation>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052, Australia. eleanor.bailey@orygen.org.au.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052, Australia. eleanor.bailey@orygen.org.au.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>Centre for Mental Health, Swinburne University of Technology, John St, Hawthorn, VIC, 3122, Australia. eleanor.bailey@orygen.org.au.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Mühlmann</LastName><ForeName>Charlotte</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>Danish Research Institute for Suicide Prevention, Mental Health Centre Copenhagen, Gentofte Hospitalsvej 15, 4. Sal, 2900, Hellerup, Denmark.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>University of Copenhagen, Nørregade 10, 1165, København, Denmark.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Rice</LastName><ForeName>Simon</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052, Australia.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052, Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Nedeljkovic</LastName><ForeName>Maja</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Centre for Mental Health, Swinburne University of Technology, John St, Hawthorn, VIC, 3122, Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Alvarez-Jimenez</LastName><ForeName>Mario</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052, Australia.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052, Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Sander</LastName><ForeName>Lasse</ForeName><Initials>L</Initials><AffiliationInfo><Affiliation>Department of Rehabilitation Psychology and Psychotherapy, Albert-Ludwigs-University Freiburg, Engelbergerstr. 41, D-79085, Freiburg, Germany.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Calear</LastName><ForeName>Alison L</ForeName><Initials>AL</Initials><AffiliationInfo><Affiliation>Centre for Mental Health Research, Research School of Population Health, The Australian National University, Canberra, ACT, 2061, Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Batterham</LastName><ForeName>Philip J</ForeName><Initials>PJ</Initials><AffiliationInfo><Affiliation>Centre for Mental Health Research, Research School of Population Health, The Australian National University, Canberra, ACT, 2061, Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Robinson</LastName><ForeName>Jo</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Orygen, Locked Bag 10, 35 Poplar Road, Parkville, VIC, 3052, Australia.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>Centre for Youth Mental Health, University of Melbourne, 35 Poplar Road, Parkville, VIC, 3052, Australia.</Affiliation></AffiliationInfo></Author></AuthorList><Language>eng</Language><PublicationTypeList><PublicationType UI="D016428">Journal Article</PublicationType><PublicationType UI="D013485">Research Support, Non-U.S. 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