Impact of Open Data Policies on Consent to Participate in Human Subjects Research: Discrepancies between Participant Action and Reported Concerns
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{"title"=>"Impact of open data policies on consent to participate in human subjects research: Discrepancies between participant action and reported concerns", "type"=>"journal", "authors"=>[{"first_name"=>"Jorden A.", "last_name"=>"Cummings", "scopus_author_id"=>"39361114700"}, {"first_name"=>"Jessica M.", "last_name"=>"Zagrodney", "scopus_author_id"=>"56674672300"}, {"first_name"=>"T. Eugene", "last_name"=>"Day", "scopus_author_id"=>"56013981800"}], "year"=>2015, "source"=>"PLoS ONE", "identifiers"=>{"pui"=>"604612785", "sgr"=>"84930638975", "pmid"=>"25993308", "scopus"=>"2-s2.0-84930638975", "doi"=>"10.1371/journal.pone.0125208", "issn"=>"19326203"}, "id"=>"0a1f3b08-2356-3bae-8528-6d0e0538898f", "abstract"=>"Research outlets are increasingly adopting open data policies as a requisite for publication, including studies with human subjects data. We investigated whether open data policies influence participants' rate of consent by randomly assigning participants to view consent forms with and without discussion of open data policies. No participants declined to participate, regardless of condition, nor did rates of drop-out vs. completion vary between conditions. Furthermore, no significant change in potential consent rates was reported when participants were openly asked about the influence of open data policies on their likelihood of consent. However, follow-up analyses indicated possible poor attention to consent forms, consistent with previous research. Moreover, thematic analysis of participants' considerations of open data policy indicated multiple considerations such as concerns regarding confidentiality, anonymity, data security, and study sensitivity. The impact of open data policies on participation raises complex issues at the intersection of ethics and scientific innovation. We conclude by encouraging researchers to consider participants as stakeholders in open data policy and by providing recommendations for open data policies in human subjects research.", "link"=>"http://www.mendeley.com/research/impact-open-data-policies-consent-participate-human-subjects-research-discrepancies-between-particip", "reader_count"=>36, "reader_count_by_academic_status"=>{"Unspecified"=>1, "Professor > Associate Professor"=>3, "Librarian"=>2, "Researcher"=>5, "Student > Doctoral Student"=>3, "Student > Ph. D. Student"=>9, "Student > Postgraduate"=>1, "Other"=>4, "Student > Master"=>3, "Student > Bachelor"=>2, "Lecturer"=>1, "Lecturer > Senior Lecturer"=>1, "Professor"=>1}, "reader_count_by_user_role"=>{"Unspecified"=>1, "Professor > Associate Professor"=>3, "Librarian"=>2, "Researcher"=>5, "Student > Doctoral Student"=>3, "Student > Ph. D. Student"=>9, "Student > Postgraduate"=>1, "Other"=>4, "Student > Master"=>3, "Student > Bachelor"=>2, "Lecturer"=>1, "Lecturer > Senior Lecturer"=>1, "Professor"=>1}, "reader_count_by_subject_area"=>{"Unspecified"=>2, "Agricultural and Biological Sciences"=>1, "Arts and Humanities"=>2, "Business, Management and Accounting"=>1, "Computer Science"=>6, "Earth and Planetary Sciences"=>1, "Engineering"=>1, "Nursing and Health Professions"=>1, "Mathematics"=>1, "Medicine and Dentistry"=>4, "Physics and Astronomy"=>1, "Psychology"=>8, "Social Sciences"=>7}, "reader_count_by_subdiscipline"=>{"Medicine and Dentistry"=>{"Medicine and Dentistry"=>4}, "Social Sciences"=>{"Social Sciences"=>7}, "Physics and Astronomy"=>{"Physics and Astronomy"=>1}, "Psychology"=>{"Psychology"=>8}, "Mathematics"=>{"Mathematics"=>1}, "Unspecified"=>{"Unspecified"=>2}, "Arts and Humanities"=>{"Arts and Humanities"=>2}, "Engineering"=>{"Engineering"=>1}, "Earth and Planetary Sciences"=>{"Earth and Planetary Sciences"=>1}, "Agricultural and Biological Sciences"=>{"Agricultural and Biological Sciences"=>1}, "Computer Science"=>{"Computer Science"=>6}, "Business, Management and Accounting"=>{"Business, Management and Accounting"=>1}, "Nursing and Health Professions"=>{"Nursing and Health Professions"=>1}}, "reader_count_by_country"=>{"New Zealand"=>1, "United States"=>1, "Luxembourg"=>1, "United Kingdom"=>4, "Kenya"=>1, "Germany"=>2, "Croatia"=>1}, "group_count"=>2}

Scopus | Further Information

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  • {"unique-ip"=>"44", "full-text"=>"53", "pdf"=>"1", "scanned-summary"=>"0", "scanned-page-browse"=>"0", "figure"=>"0", "supp-data"=>"0", "cited-by"=>"0", "year"=>"2018", "month"=>"7"}
  • {"unique-ip"=>"19", "full-text"=>"18", "pdf"=>"3", "scanned-summary"=>"0", "scanned-page-browse"=>"0", "figure"=>"0", "supp-data"=>"0", "cited-by"=>"0", "year"=>"2018", "month"=>"10"}
  • {"unique-ip"=>"13", "full-text"=>"11", "pdf"=>"3", "scanned-summary"=>"0", "scanned-page-browse"=>"0", "figure"=>"0", "supp-data"=>"0", "cited-by"=>"0", "year"=>"2018", "month"=>"8"}
  • {"unique-ip"=>"11", "full-text"=>"10", "pdf"=>"1", "scanned-summary"=>"0", "scanned-page-browse"=>"0", "figure"=>"0", "supp-data"=>"0", "cited-by"=>"0", "year"=>"2018", "month"=>"12"}
  • {"unique-ip"=>"16", "full-text"=>"18", "pdf"=>"3", "scanned-summary"=>"0", "scanned-page-browse"=>"0", "figure"=>"0", "supp-data"=>"0", "cited-by"=>"0", "year"=>"2019", "month"=>"2"}
  • {"unique-ip"=>"16", "full-text"=>"15", "pdf"=>"4", "scanned-summary"=>"0", "scanned-page-browse"=>"0", "figure"=>"0", "supp-data"=>"0", "cited-by"=>"0", "year"=>"2019", "month"=>"3"}
  • {"unique-ip"=>"17", "full-text"=>"16", "pdf"=>"2", "scanned-summary"=>"0", "scanned-page-browse"=>"0", "figure"=>"0", "supp-data"=>"0", "cited-by"=>"0", "year"=>"2019", "month"=>"4"}

Relative Metric

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