One thing leads to another: the cascade of obligations when researchers report genetic research results to study participants
Even as debate continues about the putative obligation to proactively report genetic research results to study participants, there is an increasing need to attend to the obligations that might cascade from any initial report. We conducted an international, quasi-experimental survey of researchers in...
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| Veröffentlicht in: | European journal of human genetics : EJHG 2012-08, Vol.20 (8), p.837-843 |
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| creator | ALICE MILLER, Fiona ZOE HAYEEMS, Robin LI LI PEACE BYTAUTAS, Jessica |
| description | Even as debate continues about the putative obligation to proactively report genetic research results to study participants, there is an increasing need to attend to the obligations that might cascade from any initial report. We conducted an international, quasi-experimental survey of researchers involved in autism spectrum disorders (ASD) and cystic fibrosis (CF) genetics to explore perceived obligations to ensure updated information or relevant clinical care subsequent to any initial communication of research results, and factors influencing these attitudes. 5-point Likert scales of dis/agreement were analyzed using descriptive and multivariate statistics. Of the 343 respondents (44% response rate), large majorities agreed that in general and in a variety of hypothetical research contexts, research teams that report results should ensure that participants gain subsequent access to updated information (74-83%) and implicated clinical services (79-87%). At the same time, researchers perceived barriers restricting access to relevant clinical care, though this was significantly more pronounced (P |
| doi_str_mv | 10.1038/ejhg.2012.24 |
| format | Article |
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We conducted an international, quasi-experimental survey of researchers involved in autism spectrum disorders (ASD) and cystic fibrosis (CF) genetics to explore perceived obligations to ensure updated information or relevant clinical care subsequent to any initial communication of research results, and factors influencing these attitudes. 5-point Likert scales of dis/agreement were analyzed using descriptive and multivariate statistics. Of the 343 respondents (44% response rate), large majorities agreed that in general and in a variety of hypothetical research contexts, research teams that report results should ensure that participants gain subsequent access to updated information (74-83%) and implicated clinical services (79-87%). At the same time, researchers perceived barriers restricting access to relevant clinical care, though this was significantly more pronounced (P<0.001) for ASD (64%) than CF (34%). In the multivariate model, endorsement of cascading obligations was positively associated with researcher characteristics (eg, clinical role/training) and attitudes (eg, perceived initial reporting obligation), and negatively associated with the initial report of less scientifically robust hypothetical results, but unaffected by perceived or hypothetical barriers to care. These results suggest that researchers strongly endorse information and care-based obligations that cascade from the initial report of research results to study participants. In addition, they raise challenging questions about how any cascading obligations are to be met, especially where access challenges are already prevalent.</description><identifier>ISSN: 1018-4813</identifier><identifier>EISSN: 1476-5438</identifier><identifier>DOI: 10.1038/ejhg.2012.24</identifier><identifier>PMID: 22333903</identifier><language>eng</language><publisher>Basingstoke: Nature Publishing Group</publisher><subject>Attitude of Health Personnel ; Autism ; Biological and medical sciences ; Child abuse & neglect ; Child clinical studies ; Communication ; Cystic fibrosis ; Cystic Fibrosis - genetics ; Developmental disorders ; Ethics ; Female ; Fibrosis ; Fundamental and applied biological sciences. Psychology ; Genetic research ; Genetic Research - ethics ; Genetics of eukaryotes. Biological and molecular evolution ; Health care policy ; Humans ; Infantile autism ; Male ; Medical genetics ; Medical research ; Medical sciences ; Molecular and cellular biology ; Moral Obligations ; Multivariate analysis ; Psychology. Psychoanalysis. Psychiatry ; Psychopathology. Psychiatry ; Research Personnel - ethics ; Research Report ; Researchers ; Social Perception ; Statistics ; Studies ; Surveys and Questionnaires ; Truth Disclosure - ethics</subject><ispartof>European journal of human genetics : EJHG, 2012-08, Vol.20 (8), p.837-843</ispartof><rights>2015 INIST-CNRS</rights><rights>Copyright Nature Publishing Group Aug 2012</rights><rights>Copyright © 2012 Macmillan Publishers Limited 2012 Macmillan Publishers Limited</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c475t-8c937d3f1b9b69c78795586cb3c775651424b6cded38becf5418bbcb7f7cbdbb3</citedby><cites>FETCH-LOGICAL-c475t-8c937d3f1b9b69c78795586cb3c775651424b6cded38becf5418bbcb7f7cbdbb3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3400736/pdf/$$EPDF$$P50$$Gpubmedcentral$$H</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3400736/$$EHTML$$P50$$Gpubmedcentral$$H</linktohtml><link.rule.ids>230,314,727,780,784,885,27924,27925,53791,53793</link.rule.ids><backlink>$$Uhttp://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&idt=26141858$$DView record in Pascal Francis$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/22333903$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>ALICE MILLER, Fiona</creatorcontrib><creatorcontrib>ZOE HAYEEMS, Robin</creatorcontrib><creatorcontrib>LI LI</creatorcontrib><creatorcontrib>PEACE BYTAUTAS, Jessica</creatorcontrib><title>One thing leads to another: the cascade of obligations when researchers report genetic research results to study participants</title><title>European journal of human genetics : EJHG</title><addtitle>Eur J Hum Genet</addtitle><description>Even as debate continues about the putative obligation to proactively report genetic research results to study participants, there is an increasing need to attend to the obligations that might cascade from any initial report. We conducted an international, quasi-experimental survey of researchers involved in autism spectrum disorders (ASD) and cystic fibrosis (CF) genetics to explore perceived obligations to ensure updated information or relevant clinical care subsequent to any initial communication of research results, and factors influencing these attitudes. 5-point Likert scales of dis/agreement were analyzed using descriptive and multivariate statistics. Of the 343 respondents (44% response rate), large majorities agreed that in general and in a variety of hypothetical research contexts, research teams that report results should ensure that participants gain subsequent access to updated information (74-83%) and implicated clinical services (79-87%). At the same time, researchers perceived barriers restricting access to relevant clinical care, though this was significantly more pronounced (P<0.001) for ASD (64%) than CF (34%). In the multivariate model, endorsement of cascading obligations was positively associated with researcher characteristics (eg, clinical role/training) and attitudes (eg, perceived initial reporting obligation), and negatively associated with the initial report of less scientifically robust hypothetical results, but unaffected by perceived or hypothetical barriers to care. These results suggest that researchers strongly endorse information and care-based obligations that cascade from the initial report of research results to study participants. In addition, they raise challenging questions about how any cascading obligations are to be met, especially where access challenges are already prevalent.</description><subject>Attitude of Health Personnel</subject><subject>Autism</subject><subject>Biological and medical sciences</subject><subject>Child abuse & neglect</subject><subject>Child clinical studies</subject><subject>Communication</subject><subject>Cystic fibrosis</subject><subject>Cystic Fibrosis - genetics</subject><subject>Developmental disorders</subject><subject>Ethics</subject><subject>Female</subject><subject>Fibrosis</subject><subject>Fundamental and applied biological sciences. Psychology</subject><subject>Genetic research</subject><subject>Genetic Research - ethics</subject><subject>Genetics of eukaryotes. 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Psychology</topic><topic>Genetic research</topic><topic>Genetic Research - ethics</topic><topic>Genetics of eukaryotes. Biological and molecular evolution</topic><topic>Health care policy</topic><topic>Humans</topic><topic>Infantile autism</topic><topic>Male</topic><topic>Medical genetics</topic><topic>Medical research</topic><topic>Medical sciences</topic><topic>Molecular and cellular biology</topic><topic>Moral Obligations</topic><topic>Multivariate analysis</topic><topic>Psychology. Psychoanalysis. Psychiatry</topic><topic>Psychopathology. 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In the multivariate model, endorsement of cascading obligations was positively associated with researcher characteristics (eg, clinical role/training) and attitudes (eg, perceived initial reporting obligation), and negatively associated with the initial report of less scientifically robust hypothetical results, but unaffected by perceived or hypothetical barriers to care. These results suggest that researchers strongly endorse information and care-based obligations that cascade from the initial report of research results to study participants. In addition, they raise challenging questions about how any cascading obligations are to be met, especially where access challenges are already prevalent.</abstract><cop>Basingstoke</cop><pub>Nature Publishing Group</pub><pmid>22333903</pmid><doi>10.1038/ejhg.2012.24</doi><tpages>7</tpages><oa>free_for_read</oa></addata></record> |
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| identifier | ISSN: 1018-4813 |
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| issn | 1018-4813 1476-5438 |
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| subjects | Attitude of Health Personnel Autism Biological and medical sciences Child abuse & neglect Child clinical studies Communication Cystic fibrosis Cystic Fibrosis - genetics Developmental disorders Ethics Female Fibrosis Fundamental and applied biological sciences. Psychology Genetic research Genetic Research - ethics Genetics of eukaryotes. Biological and molecular evolution Health care policy Humans Infantile autism Male Medical genetics Medical research Medical sciences Molecular and cellular biology Moral Obligations Multivariate analysis Psychology. Psychoanalysis. Psychiatry Psychopathology. Psychiatry Research Personnel - ethics Research Report Researchers Social Perception Statistics Studies Surveys and Questionnaires Truth Disclosure - ethics |
| title | One thing leads to another: the cascade of obligations when researchers report genetic research results to study participants |
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