Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking
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{"title"=>"Fair shares and sharing fairly: A survey of public views on open science, informed consent and participatory research in biobanking", "type"=>"journal", "authors"=>[{"first_name"=>"Yann", "last_name"=>"Joly", "scopus_author_id"=>"6701677392"}, {"first_name"=>"Gratien", "last_name"=>"Dalpé", "scopus_author_id"=>"6602925923"}, {"first_name"=>"Derek", "last_name"=>"So", "scopus_author_id"=>"55936011000"}, {"first_name"=>"Stanislav", "last_name"=>"Birko", "scopus_author_id"=>"56711299800"}], "year"=>2015, "source"=>"PLoS ONE", "identifiers"=>{"isbn"=>"1932-6203", "pmid"=>"26154134", "doi"=>"10.1371/journal.pone.0129893", "pui"=>"605952315", "issn"=>"19326203", "sgr"=>"84941357083", "scopus"=>"2-s2.0-84941357083"}, "id"=>"d9553b5a-f3d2-36f1-b869-0d58425bc3a3", "abstract"=>"CONTEXT: Biobanks are important resources which enable large-scale genomic research with human samples and data, raising significant ethical concerns about how participants' information is managed and shared. Three previous studies of the Canadian public's opinion about these topics have been conducted. Building on those results, an online survey representing the first study of public perceptions about biobanking spanning all Canadian provinces was conducted. Specifically, this study examined qualitative views about biobank objectives, governance structure, control and ownership of samples and data, benefit sharing, consent practices and data sharing norms, as well as additional questions and ethical concerns expressed by the public. RESULTS: Over half the respondents preferred to give a one-time general consent for the future sharing of their samples among researchers. Most expressed willingness for their data to be shared with the international scientific community rather than used by one or more Canadian institutions. Whereas more respondents indicated a preference for one-time general consent than any other model of consent, they constituted less than half of the total responses, revealing a lack of consensus among survey respondents regarding this question. Respondents identified biobank objectives, governance structure and accountability as the most important information to provide participants. Respondents' concerns about biobanking generally centred around the control and ownership of biological samples and data, especially with respect to potential misuse by insurers, the government and other third parties. Although almost half the respondents suggested that these should be managed by the researchers' institutions, results indicate that the public is interested in being well-informed about these projects and suggest the importance of increased involvement from participants. In conclusion, the study discusses the viability of several proposed models for informed consent, including e-governance, independent trustees and the use of exclusion clauses, in the context of these new findings about the views of the Canadian public.", "link"=>"http://www.mendeley.com/research/fair-shares-sharing-fairly-survey-public-views-open-science-informed-consent-participatory-research", "reader_count"=>35, "reader_count_by_academic_status"=>{"Unspecified"=>1, "Researcher"=>7, "Student > Doctoral Student"=>3, "Student > Ph. D. Student"=>8, "Student > Postgraduate"=>1, "Student > Master"=>9, "Other"=>1, "Student > Bachelor"=>4, "Professor"=>1}, "reader_count_by_user_role"=>{"Unspecified"=>1, "Researcher"=>7, "Student > Doctoral Student"=>3, "Student > Ph. D. Student"=>8, "Student > Postgraduate"=>1, "Student > Master"=>9, "Other"=>1, "Student > Bachelor"=>4, "Professor"=>1}, "reader_count_by_subject_area"=>{"Unspecified"=>3, "Engineering"=>1, "Biochemistry, Genetics and Molecular Biology"=>2, "Nursing and Health Professions"=>3, "Medicine and Dentistry"=>11, "Agricultural and Biological Sciences"=>2, "Philosophy"=>1, "Neuroscience"=>1, "Business, Management and Accounting"=>2, "Psychology"=>1, "Social Sciences"=>8}, "reader_count_by_subdiscipline"=>{"Engineering"=>{"Engineering"=>1}, "Medicine and Dentistry"=>{"Medicine and Dentistry"=>11}, "Neuroscience"=>{"Neuroscience"=>1}, "Social Sciences"=>{"Social Sciences"=>8}, "Psychology"=>{"Psychology"=>1}, "Agricultural and Biological Sciences"=>{"Agricultural and Biological Sciences"=>2}, "Nursing and Health Professions"=>{"Nursing and Health Professions"=>3}, "Business, Management and Accounting"=>{"Business, Management and Accounting"=>2}, "Biochemistry, Genetics and Molecular Biology"=>{"Biochemistry, Genetics and Molecular Biology"=>2}, "Unspecified"=>{"Unspecified"=>3}, "Philosophy"=>{"Philosophy"=>1}}, "reader_count_by_country"=>{"Canada"=>2, "Netherlands"=>1}, "group_count"=>5}

Scopus | Further Information

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Figshare

  • {"files"=>["https://ndownloader.figshare.com/files/2167432"], "description"=>"<p><sup>†</sup>Data are: mean±SD (range)</p><p>*The assumptions for the Chi Square test used were not satisfied [<a href=\"http://www.plosone.org/article/info:doi/10.1371/journal.pone.0129893#pone.0129893.ref032\" target=\"_blank\">32</a>, <a href=\"http://www.plosone.org/article/info:doi/10.1371/journal.pone.0129893#pone.0129893.ref033\" target=\"_blank\">33</a>].</p><p>Data and Sample Sharing Model Preferences versus Demographic Characteristics of Survey Respondents.</p>", "links"=>[], "tags"=>["consent", "biobanking", "half", "biobank objectives", "concern", "governance structure", "survey", "respondent", "researcher", "institution", "sample", "information", "participant", "respondents", "ownership", "data", "model"], "article_id"=>1477237, "categories"=>["Biological Sciences", "Science Policy"], "users"=>["Yann Joly", "Gratien Dalpé", "Derek So", "Stanislav Birko"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0129893.t005", "stats"=>{"downloads"=>1, "page_views"=>3, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Data_and_Sample_Sharing_Model_Preferences_versus_Demographic_Characteristics_of_Survey_Respondents_/1477237", "title"=>"Data and Sample Sharing Model Preferences versus Demographic Characteristics of Survey Respondents.", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2015-07-08 03:04:48"}
  • {"files"=>["https://ndownloader.figshare.com/files/2167431"], "description"=>"<p>Top 10 Themes in Respondents’ Desired Information about Biobank Projects.</p>", "links"=>[], "tags"=>["consent", "biobanking", "half", "biobank objectives", "concern", "governance structure", "survey", "respondent", "researcher", "institution", "sample", "information", "participant", "respondents", "ownership", "data", "model"], "article_id"=>1477236, "categories"=>["Biological Sciences", "Science Policy"], "users"=>["Yann Joly", "Gratien Dalpé", "Derek So", "Stanislav Birko"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0129893.t004", "stats"=>{"downloads"=>1, "page_views"=>4, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Top_10_Themes_in_Respondents_8217_Desired_Information_about_Biobank_Projects_/1477236", "title"=>"Top 10 Themes in Respondents’ Desired Information about Biobank Projects.", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2015-07-08 03:04:48"}
  • {"files"=>["https://ndownloader.figshare.com/files/2167428"], "description"=>"<p>Respondents selected from among the listed options their preferred type of consent (A), scope of data sharing (B), use of any profits from the research (C), control over samples and data (D). All graphics display the percentages of participants opting for provided multiple choices. In order to reflect the fact that some participants used the “other” box to select more than one of the listed options, those answers were reassigned to the categories in question, resulting in percentages summing to over 100% in (C) and (D).</p>", "links"=>[], "tags"=>["consent", "biobanking", "half", "biobank objectives", "concern", "governance structure", "survey", "respondent", "researcher", "institution", "sample", "information", "participant", "respondents", "ownership", "data", "model"], "article_id"=>1477233, "categories"=>["Biological Sciences", "Science Policy"], "users"=>["Yann Joly", "Gratien Dalpé", "Derek So", "Stanislav Birko"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0129893.g001", "stats"=>{"downloads"=>2, "page_views"=>16, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Preferences_for_consent_models_data_sharing_allocation_of_profits_and_ownership_of_samples_and_data_/1477233", "title"=>"Preferences for consent models, data sharing, allocation of profits and ownership of samples and data.", "pos_in_sequence"=>0, "defined_type"=>1, "published_date"=>"2015-07-08 03:04:48"}
  • {"files"=>["https://ndownloader.figshare.com/files/2167434", "https://ndownloader.figshare.com/files/2167435", "https://ndownloader.figshare.com/files/2167436", "https://ndownloader.figshare.com/files/2167437", "https://ndownloader.figshare.com/files/2167438"], "description"=>"<div><p>Context</p><p>Biobanks are important resources which enable large-scale genomic research with human samples and data, raising significant ethical concerns about how participants’ information is managed and shared. Three previous studies of the Canadian public’s opinion about these topics have been conducted. Building on those results, an online survey representing the first study of public perceptions about biobanking spanning all Canadian provinces was conducted. Specifically, this study examined qualitative views about biobank objectives, governance structure, control and ownership of samples and data, benefit sharing, consent practices and data sharing norms, as well as additional questions and ethical concerns expressed by the public.</p><p>Results</p><p>Over half the respondents preferred to give a one-time general consent for the future sharing of their samples among researchers. Most expressed willingness for their data to be shared with the international scientific community rather than used by one or more Canadian institutions. Whereas more respondents indicated a preference for one-time general consent than any other model of consent, they constituted less than half of the total responses, revealing a lack of consensus among survey respondents regarding this question. Respondents identified biobank objectives, governance structure and accountability as the most important information to provide participants. Respondents’ concerns about biobanking generally centred around the control and ownership of biological samples and data, especially with respect to potential misuse by insurers, the government and other third parties. Although almost half the respondents suggested that these should be managed by the researchers’ institutions, results indicate that the public is interested in being well-informed about these projects and suggest the importance of increased involvement from participants. In conclusion, the study discusses the viability of several proposed models for informed consent, including e-governance, independent trustees and the use of exclusion clauses, in the context of these new findings about the views of the Canadian public.</p></div>", "links"=>[], "tags"=>["consent", "biobanking", "half", "biobank objectives", "concern", "governance structure", "survey", "respondent", "researcher", "institution", "sample", "information", "participant", "respondents", "ownership", "data", "model"], "article_id"=>1477239, "categories"=>["Biological Sciences", "Science Policy"], "users"=>["Yann Joly", "Gratien Dalpé", "Derek So", "Stanislav Birko"], "doi"=>["https://dx.doi.org/10.1371/journal.pone.0129893.s001", "https://dx.doi.org/10.1371/journal.pone.0129893.s002", "https://dx.doi.org/10.1371/journal.pone.0129893.s003", "https://dx.doi.org/10.1371/journal.pone.0129893.s004", "https://dx.doi.org/10.1371/journal.pone.0129893.s005"], "stats"=>{"downloads"=>24, "page_views"=>5, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Fair_Shares_and_Sharing_Fairly_A_Survey_of_Public_Views_on_Open_Science_Informed_Consent_and_Participatory_Research_in_Biobanking_/1477239", "title"=>"Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking", "pos_in_sequence"=>0, "defined_type"=>4, "published_date"=>"2015-07-08 03:04:48"}
  • {"files"=>["https://ndownloader.figshare.com/files/2167433"], "description"=>"<p>Top 10 Themes in Risks Respondents Identified with a Confidentiality Breach.</p>", "links"=>[], "tags"=>["consent", "biobanking", "half", "biobank objectives", "concern", "governance structure", "survey", "respondent", "researcher", "institution", "sample", "information", "participant", "respondents", "ownership", "data", "model"], "article_id"=>1477238, "categories"=>["Biological Sciences", "Science Policy"], "users"=>["Yann Joly", "Gratien Dalpé", "Derek So", "Stanislav Birko"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0129893.t006", "stats"=>{"downloads"=>1, "page_views"=>14, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Top_10_Themes_in_Risks_Respondents_Identified_with_a_Confidentiality_Breach_/1477238", "title"=>"Top 10 Themes in Risks Respondents Identified with a Confidentiality Breach.", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2015-07-08 03:04:48"}
  • {"files"=>["https://ndownloader.figshare.com/files/2167430"], "description"=>"<p>Pearson Chi-Square of Demographic Variable Pairs.</p>", "links"=>[], "tags"=>["consent", "biobanking", "half", "biobank objectives", "concern", "governance structure", "survey", "respondent", "researcher", "institution", "sample", "information", "participant", "respondents", "ownership", "data", "model"], "article_id"=>1477235, "categories"=>["Biological Sciences", "Science Policy"], "users"=>["Yann Joly", "Gratien Dalpé", "Derek So", "Stanislav Birko"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0129893.t002", "stats"=>{"downloads"=>2, "page_views"=>8, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Pearson_Chi_Square_of_Demographic_Variable_Pairs_/1477235", "title"=>"Pearson Chi-Square of Demographic Variable Pairs.", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2015-07-08 03:04:48"}
  • {"files"=>["https://ndownloader.figshare.com/files/2167429"], "description"=>"<p>“West” includes the provinces of British Columbia, Alberta, Saskatchewan, and Manitoba. “East” is defined as Quebec, New Brunswick, Nova Scotia, Prince Edwards Island, and Newfoundland and Labrador. Respondents that selected that they had attended “some high school”, “graduated from high school”, had attended some or graduated from “college / CEGEP / trade school” were classified under “Did not attend university”. Those that self-identified as having attended “some university” or holding a “university undergraduate degree, such as a Master’s or PhD” or a “university graduate degree, such as a Master’s or PhD” were classified as “attended university”.</p><p>Demographics of Survey Respondents.</p>", "links"=>[], "tags"=>["consent", "biobanking", "half", "biobank objectives", "concern", "governance structure", "survey", "respondent", "researcher", "institution", "sample", "information", "participant", "respondents", "ownership", "data", "model"], "article_id"=>1477234, "categories"=>["Biological Sciences", "Science Policy"], "users"=>["Yann Joly", "Gratien Dalpé", "Derek So", "Stanislav Birko"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0129893.t001", "stats"=>{"downloads"=>1, "page_views"=>4, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Demographics_of_Survey_Respondents_/1477234", "title"=>"Demographics of Survey Respondents.", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2015-07-08 03:04:48"}

PMC Usage Stats | Further Information

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Relative Metric

{"start_date"=>"2015-01-01T00:00:00Z", "end_date"=>"2015-12-31T00:00:00Z", "subject_areas"=>[]}
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