Concerns of Newborn Blood Screening Advisory Committee Members Regarding Storage and Use of Residual Newborn Screening Blood Spots.
Objectives. We assessed attitudes and opinions of members of newborn blood screening (NBS) advisory committees regarding the storage and secondary research use of residual specimens from NBS. Methods. We conducted focus groups in 2008 and 2009 with NBS advisory committees (4 focus groups; n = 39 par...
| Publicado en: | American Journal of Public Health Vol. 101; no. 11; pp. 2111 - 2117 |
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| Autores principales: | , , , , , , , |
| Formato: | Journal Article |
| Publicado: |
American Public Health Association
Nov2011
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| Materias: | |
| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ssf&AN=104642024&site=ehost-live header: @attributes: shortDbName: ssf uiTerm: 104642024 longDbName: Social Sciences Full Text (H.W. Wilson) uiTag: AN controlInfo: bkinfo: jinfo: jid: 00900036 APH jtl: American Journal of Public Health issn: 00900036 maglogo: N pubinfo: dt: Nov2011 vid: 101 iid: 11 pid: 44 pub: American Public Health Association artinfo: ui: 104642024 10.2105/AJPH.2010.200485 ppf: 2111 ppct: 6 formats: tig: atl: Concerns of Newborn Blood Screening Advisory Committee Members Regarding Storage and Use of Residual Newborn Screening Blood Spots. aug: au: Rothwell, Erin W. Anderson, Rebecca A. Burbank, Matthew J. Goldenberg, Aaron J. Lewis, Michelle Huckaby Stark, Louisa A. Wong, Bob Botkin, Jeffrey R. su: United States Focus groups Legal liability Medical ethics Medical screening Parenting Privacy Research ethics Qualitative research Occupational roles Social attitudes Committees Research methodology Research funding Tissue banks Thematic analysis sug: subj: Focus groups Legal liability Medical ethics Medical screening Parenting Privacy Research ethics Qualitative research Occupational roles Social attitudes United States All Other Miscellaneous Ambulatory Health Care Services Blood and Organ Banks Committees Research methodology Research funding Tissue banks Thematic analysis ab: Objectives. We assessed attitudes and opinions of members of newborn blood screening (NBS) advisory committees regarding the storage and secondary research use of residual specimens from NBS. Methods. We conducted focus groups in 2008 and 2009 with NBS advisory committees (4 focus groups; n = 39 participants) in the Mountain States region (i.e., AZ, CO, MT, NM, NV, TX, UT, and WY). Results. Participants identified several challenges to implementing policies for storage of and research on residual newborn blood specimens. Themes that emerged from the data were public health relevancy; improvement of parental knowledge; impact of enhanced parental involvement; concerns over ownership, privacy, and confidentiality; identification of secondary research uses; and role of advisory committees. Conclusions. Participants indicated that secondary uses of residual specimens entailed opportunities for improvements in NBS programs but also carried significant risks for their programs. Addressing concerns from stakeholders will be necessary for state-level adoption of national recommendations. pubtype: Academic Journal doctype: Journal Article src: R language: English refInfo: copyright: @attributes: flag: N holdings: @attributes: islocal: N |
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