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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...

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Published in:American Journal of Public Health Vol. 101; no. 11; pp. 2111 - 2117
Main Authors: Rothwell, Erin W., Anderson, Rebecca A., Burbank, Matthew J., Goldenberg, Aaron J., Lewis, Michelle Huckaby, Stark, Louisa A., Wong, Bob, Botkin, Jeffrey R.
Format: Journal Article
Published: American Public Health Association Nov2011
Subjects:
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
Online Access:View this record in EBSCOhost
Summary: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.