Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples
Discussions about disclosing individual genetic research results include calls to consider participants’ preferences. In this study, parents of Boston Children’s Hospital patients set preferences for disclosure based on disease preventability and severity, and could exclude mental health, developmen...
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| Veröffentlicht in: | Journal of empirical research on human research ethics 2017-04, Vol.12 (2), p.97-106 |
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| container_title | Journal of empirical research on human research ethics |
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| creator | Christensen, Kurt D. Savage, Sarah K. Huntington, Noelle L. Weitzman, Elissa R. Ziniel, Sonja I. Bacon, Phoebe L. Cacioppo, Cara N. Green, Robert C. Holm, Ingrid A. |
| description | Discussions about disclosing individual genetic research results include calls to consider participants’ preferences. In this study, parents of Boston Children’s Hospital patients set preferences for disclosure based on disease preventability and severity, and could exclude mental health, developmental, childhood degenerative, and adult-onset disorders. Participants reviewed hypothetical reports and reset preferences, if desired. Among 661 participants who initially wanted all results (64%), 1% reset preferences. Among 336 participants who initially excluded at least one category (36%), 38% reset preferences. Participants who reset preferences added 0.9 categories, on average; and their mean satisfaction on 0 to 10 scales increased from 4.7 to 7.2 (p < .001). Only 2% reduced the number of categories they wanted disclosed. Findings demonstrate the benefits of providing examples of preference options and the tendency of participants to want results disclosed. Findings also suggest that preference-setting models that do not provide specific examples of results could underestimate participants’ desires for information. |
| doi_str_mv | 10.1177/1556264617697839 |
| format | Article |
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In this study, parents of Boston Children’s Hospital patients set preferences for disclosure based on disease preventability and severity, and could exclude mental health, developmental, childhood degenerative, and adult-onset disorders. Participants reviewed hypothetical reports and reset preferences, if desired. Among 661 participants who initially wanted all results (64%), 1% reset preferences. Among 336 participants who initially excluded at least one category (36%), 38% reset preferences. Participants who reset preferences added 0.9 categories, on average; and their mean satisfaction on 0 to 10 scales increased from 4.7 to 7.2 (p < .001). Only 2% reduced the number of categories they wanted disclosed. Findings demonstrate the benefits of providing examples of preference options and the tendency of participants to want results disclosed. Findings also suggest that preference-setting models that do not provide specific examples of results could underestimate participants’ desires for information.</description><identifier>ISSN: 1556-2646</identifier><identifier>EISSN: 1556-2654</identifier><identifier>DOI: 10.1177/1556264617697839</identifier><identifier>PMID: 28421887</identifier><language>eng</language><publisher>Los Angeles, CA: Sage Publications, Ltd</publisher><subject>Adult ; Biological Specimen Banks ; Comprehension ; Disclosure ; Ethical Issues in Research with Children ; Female ; Genetic Predisposition to Disease ; Genetic Research ; Genetic Testing ; Genomics ; Hospitals ; Humans ; Informed consent ; Male ; Massachusetts ; Medical ethics ; Medical records ; Middle Aged ; Parents - psychology ; Patient Preference - psychology ; Patient Satisfaction ; Patients rights ; Pediatrics</subject><ispartof>Journal of empirical research on human research ethics, 2017-04, Vol.12 (2), p.97-106</ispartof><rights>The Author(s) 2017</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c484t-68e5e181088c959d92e69c94a6ce0ea6778e58a01490ec82060690e92af0c853</citedby><cites>FETCH-LOGICAL-c484t-68e5e181088c959d92e69c94a6ce0ea6778e58a01490ec82060690e92af0c853</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.jstor.org/stable/pdf/90012285$$EPDF$$P50$$Gjstor$$H</linktopdf><linktohtml>$$Uhttps://www.jstor.org/stable/90012285$$EHTML$$P50$$Gjstor$$H</linktohtml><link.rule.ids>230,315,782,786,805,887,21826,27931,27932,43628,43629,58024,58257</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/28421887$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Christensen, Kurt D.</creatorcontrib><creatorcontrib>Savage, Sarah K.</creatorcontrib><creatorcontrib>Huntington, Noelle L.</creatorcontrib><creatorcontrib>Weitzman, Elissa R.</creatorcontrib><creatorcontrib>Ziniel, Sonja I.</creatorcontrib><creatorcontrib>Bacon, Phoebe L.</creatorcontrib><creatorcontrib>Cacioppo, Cara N.</creatorcontrib><creatorcontrib>Green, Robert C.</creatorcontrib><creatorcontrib>Holm, Ingrid A.</creatorcontrib><title>Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples</title><title>Journal of empirical research on human research ethics</title><addtitle>J Empir Res Hum Res Ethics</addtitle><description>Discussions about disclosing individual genetic research results include calls to consider participants’ preferences. In this study, parents of Boston Children’s Hospital patients set preferences for disclosure based on disease preventability and severity, and could exclude mental health, developmental, childhood degenerative, and adult-onset disorders. Participants reviewed hypothetical reports and reset preferences, if desired. Among 661 participants who initially wanted all results (64%), 1% reset preferences. Among 336 participants who initially excluded at least one category (36%), 38% reset preferences. Participants who reset preferences added 0.9 categories, on average; and their mean satisfaction on 0 to 10 scales increased from 4.7 to 7.2 (p < .001). Only 2% reduced the number of categories they wanted disclosed. Findings demonstrate the benefits of providing examples of preference options and the tendency of participants to want results disclosed. Findings also suggest that preference-setting models that do not provide specific examples of results could underestimate participants’ desires for information.</description><subject>Adult</subject><subject>Biological Specimen Banks</subject><subject>Comprehension</subject><subject>Disclosure</subject><subject>Ethical Issues in Research with Children</subject><subject>Female</subject><subject>Genetic Predisposition to Disease</subject><subject>Genetic Research</subject><subject>Genetic Testing</subject><subject>Genomics</subject><subject>Hospitals</subject><subject>Humans</subject><subject>Informed consent</subject><subject>Male</subject><subject>Massachusetts</subject><subject>Medical ethics</subject><subject>Medical records</subject><subject>Middle Aged</subject><subject>Parents - psychology</subject><subject>Patient Preference - psychology</subject><subject>Patient Satisfaction</subject><subject>Patients rights</subject><subject>Pediatrics</subject><issn>1556-2646</issn><issn>1556-2654</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2017</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp1kU1PGzEQhi1EBZT2zgVkqZdettiOPy9ILSItEhKocOvBcryzxGF3HexdpP57HCVENFJPHo-feT3zDkInlHyjVKlzKoRkkkuqpFF6YvbQ0SpVMSn4_jbm8hB9zHlBCBcTyg_QIdOcUa3VEfpzl6CBBL2HjJuY8DAH_BuGMfU4Nvi6r8NLqEfXlmQe2yHjaYrd6gIu-TmOPb6DOrghBY9_hDhz_RO-d92yhfwJfWhcm-Hz5jxGD9Orh8tf1c3tz-vL7zeV55oPldQggGpKtPZGmNowkMYb7qQHAk4qVQDtCOWGgNeMSCJLZJhriNdicowu1rLLcdZB7aEfkmvtMoXOpb82umD_fenD3D7GFys4UcyYIvB1I5Di8wh5sF3IHtrW9RDHbItTRkldGinolx10EYtVZbpCGSqZoHJSKLKmfIo5F4O3zVBiV4uzu4srJWfvh9gWvG2qANUayO4R3v36f8HTNb_IQ0xbPUMIZay49gqyQ6mF</recordid><startdate>20170401</startdate><enddate>20170401</enddate><creator>Christensen, Kurt D.</creator><creator>Savage, Sarah K.</creator><creator>Huntington, Noelle L.</creator><creator>Weitzman, Elissa R.</creator><creator>Ziniel, Sonja I.</creator><creator>Bacon, Phoebe L.</creator><creator>Cacioppo, Cara N.</creator><creator>Green, Robert C.</creator><creator>Holm, Ingrid A.</creator><general>Sage Publications, Ltd</general><general>SAGE Publications</general><general>Sage Publications 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>K9.</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>20170401</creationdate><title>Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples</title><author>Christensen, Kurt D. ; Savage, Sarah K. ; Huntington, Noelle L. ; Weitzman, Elissa R. ; Ziniel, Sonja I. ; Bacon, Phoebe L. ; Cacioppo, Cara N. ; Green, Robert C. ; Holm, Ingrid A.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c484t-68e5e181088c959d92e69c94a6ce0ea6778e58a01490ec82060690e92af0c853</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2017</creationdate><topic>Adult</topic><topic>Biological Specimen Banks</topic><topic>Comprehension</topic><topic>Disclosure</topic><topic>Ethical Issues in Research with Children</topic><topic>Female</topic><topic>Genetic Predisposition to Disease</topic><topic>Genetic Research</topic><topic>Genetic Testing</topic><topic>Genomics</topic><topic>Hospitals</topic><topic>Humans</topic><topic>Informed consent</topic><topic>Male</topic><topic>Massachusetts</topic><topic>Medical ethics</topic><topic>Medical records</topic><topic>Middle Aged</topic><topic>Parents - psychology</topic><topic>Patient Preference - psychology</topic><topic>Patient Satisfaction</topic><topic>Patients rights</topic><topic>Pediatrics</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Christensen, Kurt D.</creatorcontrib><creatorcontrib>Savage, Sarah K.</creatorcontrib><creatorcontrib>Huntington, Noelle L.</creatorcontrib><creatorcontrib>Weitzman, Elissa R.</creatorcontrib><creatorcontrib>Ziniel, Sonja I.</creatorcontrib><creatorcontrib>Bacon, Phoebe L.</creatorcontrib><creatorcontrib>Cacioppo, Cara N.</creatorcontrib><creatorcontrib>Green, Robert C.</creatorcontrib><creatorcontrib>Holm, Ingrid A.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Journal of empirical research on human research ethics</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Christensen, Kurt D.</au><au>Savage, Sarah K.</au><au>Huntington, Noelle L.</au><au>Weitzman, Elissa R.</au><au>Ziniel, Sonja I.</au><au>Bacon, Phoebe L.</au><au>Cacioppo, Cara N.</au><au>Green, Robert C.</au><au>Holm, Ingrid A.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples</atitle><jtitle>Journal of empirical research on human research ethics</jtitle><addtitle>J Empir Res Hum Res Ethics</addtitle><date>2017-04-01</date><risdate>2017</risdate><volume>12</volume><issue>2</issue><spage>97</spage><epage>106</epage><pages>97-106</pages><issn>1556-2646</issn><eissn>1556-2654</eissn><abstract>Discussions about disclosing individual genetic research results include calls to consider participants’ preferences. In this study, parents of Boston Children’s Hospital patients set preferences for disclosure based on disease preventability and severity, and could exclude mental health, developmental, childhood degenerative, and adult-onset disorders. Participants reviewed hypothetical reports and reset preferences, if desired. Among 661 participants who initially wanted all results (64%), 1% reset preferences. Among 336 participants who initially excluded at least one category (36%), 38% reset preferences. Participants who reset preferences added 0.9 categories, on average; and their mean satisfaction on 0 to 10 scales increased from 4.7 to 7.2 (p < .001). Only 2% reduced the number of categories they wanted disclosed. Findings demonstrate the benefits of providing examples of preference options and the tendency of participants to want results disclosed. 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| subjects | Adult Biological Specimen Banks Comprehension Disclosure Ethical Issues in Research with Children Female Genetic Predisposition to Disease Genetic Research Genetic Testing Genomics Hospitals Humans Informed consent Male Massachusetts Medical ethics Medical records Middle Aged Parents - psychology Patient Preference - psychology Patient Satisfaction Patients rights Pediatrics |
| title | Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples |
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