Are positive experiences of children in non-therapeutic research justifiable research benefits?
BackgroundConducting non-therapeutic research is ethically challenging because participation conveys risks and burden and no health benefit. In this paper, we report the positive experiences of a diverse group of healthy and ill children (6–18 years) who participated in non-therapeutic research stud...
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| Veröffentlicht in: | Journal of medical ethics 2017-08, Vol.43 (8), p.530-534 |
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| creator | Staphorst, Mira S Hunfeld, Joke A M van de Vathorst, Suzanne |
| description | BackgroundConducting non-therapeutic research is ethically challenging because participation conveys risks and burden and no health benefit. In this paper, we report the positive experiences of a diverse group of healthy and ill children (6–18 years) who participated in non-therapeutic research studies and discuss whether these positive experiences can justifiably be viewed as benefits.MethodsWe used semistructured interviews from an earlier study about children's experiences in clinical research and did a secondary analysis on the positive experiences of the children in the non-therapeutic studies (N=30). Interviews were analysed using ‘thematic’ analysis.ResultsThe interviewed children most frequently mentioned as positive experiences of non-therapeutic research participation helping others and the gratification that comes with it, possible health benefits in the future, having fun and new/increased knowledge about the human body, hospitals and doing research. Less frequently mentioned were getting a present, not having to go to school and getting extra attention from healthcare staff.ConclusionsOur study shows that children participating in non-therapeutic research have various positive experiences while taking part. We argue that some of these justifiably could be taken into the risk–benefit analysis in certain situations or maybe even as a standard part of this analysis. This may help to increase the number of (crucial) non-therapeutic studies with children. |
| doi_str_mv | 10.1136/medethics-2016-103404 |
| format | Article |
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In this paper, we report the positive experiences of a diverse group of healthy and ill children (6–18 years) who participated in non-therapeutic research studies and discuss whether these positive experiences can justifiably be viewed as benefits.MethodsWe used semistructured interviews from an earlier study about children's experiences in clinical research and did a secondary analysis on the positive experiences of the children in the non-therapeutic studies (N=30). Interviews were analysed using ‘thematic’ analysis.ResultsThe interviewed children most frequently mentioned as positive experiences of non-therapeutic research participation helping others and the gratification that comes with it, possible health benefits in the future, having fun and new/increased knowledge about the human body, hospitals and doing research. Less frequently mentioned were getting a present, not having to go to school and getting extra attention from healthcare staff.ConclusionsOur study shows that children participating in non-therapeutic research have various positive experiences while taking part. We argue that some of these justifiably could be taken into the risk–benefit analysis in certain situations or maybe even as a standard part of this analysis. This may help to increase the number of (crucial) non-therapeutic studies with children.</description><identifier>ISSN: 0306-6800</identifier><identifier>EISSN: 1473-4257</identifier><identifier>DOI: 10.1136/medethics-2016-103404</identifier><identifier>PMID: 27934773</identifier><language>eng</language><publisher>England: BMJ Publishing Group Ltd</publisher><subject>Adolescent ; Altruism ; Analysis ; Attitude ; Beliefs, opinions and attitudes ; Bioethics ; Child ; Child Behavior ; Children ; Children & youth ; Clinical trials ; Ethics ; Ethics, Research ; Experience ; Female ; Health ; Health aspects ; Health care ; Health Status ; Humans ; Informed consent ; Interviews ; Learning ; Male ; Medical ethics ; Medical research ; Medicine, Experimental ; Methods ; Parents & parenting ; Participation ; Pediatrics ; Pleasure ; Psychiatry ; Psychology ; Qualitative research ; Research Design ; Research ethics ; Research Subjects ; Surveys and Questionnaires ; Teenagers</subject><ispartof>Journal of medical ethics, 2017-08, Vol.43 (8), p.530-534</ispartof><rights>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</rights><rights>2017 BMJ Publishing Group Ltd and the Institute of Medical Ethics</rights><rights>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/.</rights><rights>Copyright: 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</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-b368t-1af42fa427dbfc5da9464796c7ab67eb7a656989e15ff23684370cd873a8793f3</citedby><cites>FETCH-LOGICAL-b368t-1af42fa427dbfc5da9464796c7ab67eb7a656989e15ff23684370cd873a8793f3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.jstor.org/stable/pdf/44606617$$EPDF$$P50$$Gjstor$$H</linktopdf><linktohtml>$$Uhttps://www.jstor.org/stable/44606617$$EHTML$$P50$$Gjstor$$H</linktohtml><link.rule.ids>314,776,780,799,27903,27904,57995,58228</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/27934773$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Staphorst, Mira S</creatorcontrib><creatorcontrib>Hunfeld, Joke A M</creatorcontrib><creatorcontrib>van de Vathorst, Suzanne</creatorcontrib><title>Are positive experiences of children in non-therapeutic research justifiable research benefits?</title><title>Journal of medical ethics</title><addtitle>J Med Ethics</addtitle><description>BackgroundConducting non-therapeutic research is ethically challenging because participation conveys risks and burden and no health benefit. In this paper, we report the positive experiences of a diverse group of healthy and ill children (6–18 years) who participated in non-therapeutic research studies and discuss whether these positive experiences can justifiably be viewed as benefits.MethodsWe used semistructured interviews from an earlier study about children's experiences in clinical research and did a secondary analysis on the positive experiences of the children in the non-therapeutic studies (N=30). Interviews were analysed using ‘thematic’ analysis.ResultsThe interviewed children most frequently mentioned as positive experiences of non-therapeutic research participation helping others and the gratification that comes with it, possible health benefits in the future, having fun and new/increased knowledge about the human body, hospitals and doing research. Less frequently mentioned were getting a present, not having to go to school and getting extra attention from healthcare staff.ConclusionsOur study shows that children participating in non-therapeutic research have various positive experiences while taking part. We argue that some of these justifiably could be taken into the risk–benefit analysis in certain situations or maybe even as a standard part of this analysis. This may help to increase the number of (crucial) non-therapeutic studies with children.</description><subject>Adolescent</subject><subject>Altruism</subject><subject>Analysis</subject><subject>Attitude</subject><subject>Beliefs, opinions and attitudes</subject><subject>Bioethics</subject><subject>Child</subject><subject>Child Behavior</subject><subject>Children</subject><subject>Children & youth</subject><subject>Clinical trials</subject><subject>Ethics</subject><subject>Ethics, Research</subject><subject>Experience</subject><subject>Female</subject><subject>Health</subject><subject>Health aspects</subject><subject>Health care</subject><subject>Health Status</subject><subject>Humans</subject><subject>Informed consent</subject><subject>Interviews</subject><subject>Learning</subject><subject>Male</subject><subject>Medical ethics</subject><subject>Medical research</subject><subject>Medicine, Experimental</subject><subject>Methods</subject><subject>Parents & parenting</subject><subject>Participation</subject><subject>Pediatrics</subject><subject>Pleasure</subject><subject>Psychiatry</subject><subject>Psychology</subject><subject>Qualitative research</subject><subject>Research Design</subject><subject>Research ethics</subject><subject>Research Subjects</subject><subject>Surveys and Questionnaires</subject><subject>Teenagers</subject><issn>0306-6800</issn><issn>1473-4257</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2017</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>8G5</sourceid><sourceid>AVQMV</sourceid><sourceid>BENPR</sourceid><sourceid>GUQSH</sourceid><sourceid>K50</sourceid><sourceid>M1D</sourceid><sourceid>M2O</sourceid><recordid>eNqNkU-L1TAUxYMoznP0I4wU3Lip5l-TdCWPh47CwGx0HdL0Zl5KX1KTVMZvb4bOPMGV2QRyfufeEw5CVwR_IISJjycYoRy9zS3FRLQEM475M7QjXLKW004-RzvMsGiFwvgCvcp5wvVQ1b9EF1T2jEvJdkjvEzRLzL74X9DA_QLJQ7CQm-gae_TzmCA0PjQhhrYcIZkF1uJtkyCDSfbYTGsu3nkzzPD3cYAAzpf86TV64cyc4c3jfYl-fPn8_fC1vbm9_nbY37QDE6q0xDhOneFUjoOz3Wh6LrjshZVmEBIGaUQnetUD6Zyj1cKZxHZUkhlV_-LYJXq_zV1S_LlCLvrks4V5NgHimjVRXKqeEswr-u4fdIprCjWdJn2djZVUtFLtRt2ZGbQPNoYC98XGeYY70DX84VbvO8xqUkxU5buNtynmnMDpJfmTSb81wfqhMX1uTD80prfGqu_tY5p1qMTZ9VRRBa42YMolprPO61ohiKw63vThNP3nzj8YzKyv</recordid><startdate>201708</startdate><enddate>201708</enddate><creator>Staphorst, Mira S</creator><creator>Hunfeld, Joke A M</creator><creator>van de Vathorst, Suzanne</creator><general>BMJ Publishing Group Ltd</general><general>BMJ Publishing Group LTD</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>0-V</scope><scope>3V.</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88I</scope><scope>88J</scope><scope>8AF</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>8G5</scope><scope>AABKS</scope><scope>ABSDQ</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ALSLI</scope><scope>AVQMV</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>BTHHO</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>GUQSH</scope><scope>HCIFZ</scope><scope>K50</scope><scope>K9.</scope><scope>KB0</scope><scope>M0S</scope><scope>M1D</scope><scope>M1P</scope><scope>M2O</scope><scope>M2P</scope><scope>M2R</scope><scope>MBDVC</scope><scope>NAPCQ</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>Q9U</scope><scope>7X8</scope></search><sort><creationdate>201708</creationdate><title>Are positive experiences of children in non-therapeutic research justifiable research benefits?</title><author>Staphorst, Mira S ; Hunfeld, Joke A M ; van de Vathorst, Suzanne</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-b368t-1af42fa427dbfc5da9464796c7ab67eb7a656989e15ff23684370cd873a8793f3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2017</creationdate><topic>Adolescent</topic><topic>Altruism</topic><topic>Analysis</topic><topic>Attitude</topic><topic>Beliefs, opinions and attitudes</topic><topic>Bioethics</topic><topic>Child</topic><topic>Child Behavior</topic><topic>Children</topic><topic>Children & youth</topic><topic>Clinical trials</topic><topic>Ethics</topic><topic>Ethics, Research</topic><topic>Experience</topic><topic>Female</topic><topic>Health</topic><topic>Health aspects</topic><topic>Health care</topic><topic>Health Status</topic><topic>Humans</topic><topic>Informed consent</topic><topic>Interviews</topic><topic>Learning</topic><topic>Male</topic><topic>Medical ethics</topic><topic>Medical research</topic><topic>Medicine, Experimental</topic><topic>Methods</topic><topic>Parents & parenting</topic><topic>Participation</topic><topic>Pediatrics</topic><topic>Pleasure</topic><topic>Psychiatry</topic><topic>Psychology</topic><topic>Qualitative research</topic><topic>Research Design</topic><topic>Research ethics</topic><topic>Research Subjects</topic><topic>Surveys and Questionnaires</topic><topic>Teenagers</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Staphorst, Mira S</creatorcontrib><creatorcontrib>Hunfeld, Joke A M</creatorcontrib><creatorcontrib>van de Vathorst, Suzanne</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE 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experiences of children in non-therapeutic research justifiable research benefits?</atitle><jtitle>Journal of medical ethics</jtitle><addtitle>J Med Ethics</addtitle><date>2017-08</date><risdate>2017</risdate><volume>43</volume><issue>8</issue><spage>530</spage><epage>534</epage><pages>530-534</pages><issn>0306-6800</issn><eissn>1473-4257</eissn><abstract>BackgroundConducting non-therapeutic research is ethically challenging because participation conveys risks and burden and no health benefit. In this paper, we report the positive experiences of a diverse group of healthy and ill children (6–18 years) who participated in non-therapeutic research studies and discuss whether these positive experiences can justifiably be viewed as benefits.MethodsWe used semistructured interviews from an earlier study about children's experiences in clinical research and did a secondary analysis on the positive experiences of the children in the non-therapeutic studies (N=30). Interviews were analysed using ‘thematic’ analysis.ResultsThe interviewed children most frequently mentioned as positive experiences of non-therapeutic research participation helping others and the gratification that comes with it, possible health benefits in the future, having fun and new/increased knowledge about the human body, hospitals and doing research. Less frequently mentioned were getting a present, not having to go to school and getting extra attention from healthcare staff.ConclusionsOur study shows that children participating in non-therapeutic research have various positive experiences while taking part. We argue that some of these justifiably could be taken into the risk–benefit analysis in certain situations or maybe even as a standard part of this analysis. This may help to increase the number of (crucial) non-therapeutic studies with children.</abstract><cop>England</cop><pub>BMJ Publishing Group Ltd</pub><pmid>27934773</pmid><doi>10.1136/medethics-2016-103404</doi><tpages>5</tpages></addata></record> |
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| subjects | Adolescent Altruism Analysis Attitude Beliefs, opinions and attitudes Bioethics Child Child Behavior Children Children & youth Clinical trials Ethics Ethics, Research Experience Female Health Health aspects Health care Health Status Humans Informed consent Interviews Learning Male Medical ethics Medical research Medicine, Experimental Methods Parents & parenting Participation Pediatrics Pleasure Psychiatry Psychology Qualitative research Research Design Research ethics Research Subjects Surveys and Questionnaires Teenagers |
| title | Are positive experiences of children in non-therapeutic research justifiable research benefits? |
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