Public attitudes toward the research use and storage of residual dried blood spots from newborn screening in China
Abstract Purpose To examine public attitudes in China toward storing and using residual dried blood spots (DBS) from newborn screening (NBS). Methods A self-designed questionnaire was administered to expectant or current parents using a non-probability sampling approach that combined convenience and...
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BMC
2025-07-01
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| Series: | BMC Medical Ethics |
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| Online Access: | https://doi.org/10.1186/s12910-025-01240-2 |
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| author | Xiaoshan Yin Peiyao Wang Yaru Liu Kaixing Le Ziyan Cen Qimin He Benqing Wu Xinwen Huang |
| author_facet | Xiaoshan Yin Peiyao Wang Yaru Liu Kaixing Le Ziyan Cen Qimin He Benqing Wu Xinwen Huang |
| author_sort | Xiaoshan Yin |
| collection | DOAJ |
| description | Abstract Purpose To examine public attitudes in China toward storing and using residual dried blood spots (DBS) from newborn screening (NBS). Methods A self-designed questionnaire was administered to expectant or current parents using a non-probability sampling approach that combined convenience and snowball sampling. The survey contained questions about demographics, awareness of NBS, willingness to use DBS for research with or without parental permission, willingness to store, and preferred storage duration. Multiple logistic regression was used to identify factors associated with NBS awareness and support for DBS storage. Results Among 1,490 respondents, 42.5% were aware of NBS. Awareness was higher among those with a master’s degree (vs. junior high school, OR = 4.09, 95% CI: 2.07–8.07), income above 200,000 RMB (vs. less than 50,000, OR = 2.52, 95% CI: 1.75–3.63), and two children (vs. none, OR = 2.28, 95% CI: 1.48–3.52). Support for DBS use in research was 77.5% with parental permission and 52.0% without. Parents very willing to use DBS for research were more likely to support storage with permission (aOR = 30.11, 95% CI: 12.19–74.35) and without (aOR = 5.61, 95% CI: 2.09–15.07). Preference for indefinite storage was associated with higher support for storage than preference for a set period (aOR = 5.11, 95% CI: 3.43–7.63). Conclusion In our study, less than half were aware of NBS, yet most supported DBS use for research with consent. NBS awareness, positive research attitudes, and preference for long-term storage were linked to greater willingness to store DBS. Interventions should prioritize standardized consent procedures, prenatal education, and flexible storage options that accommodate diverse preferences. |
| format | Article |
| id | doaj-art-51aeb4038fac49809f8bcb5a8fda4b9e |
| institution | Kabale University |
| issn | 1472-6939 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Ethics |
| spelling | doaj-art-51aeb4038fac49809f8bcb5a8fda4b9e2025-08-20T03:45:32ZengBMCBMC Medical Ethics1472-69392025-07-012611810.1186/s12910-025-01240-2Public attitudes toward the research use and storage of residual dried blood spots from newborn screening in ChinaXiaoshan Yin0Peiyao Wang1Yaru Liu2Kaixing Le3Ziyan Cen4Qimin He5Benqing Wu6Xinwen Huang7Department of Genetics and Metabolism, Children’s Hospital of Zhejiang University School of Medicine, National Clinical Research Center for Child HealthDepartment of Genetics and Metabolism, Children’s Hospital of Zhejiang University School of Medicine, National Clinical Research Center for Child HealthDepartment of Genetics and Metabolism, Children’s Hospital of Zhejiang University School of Medicine, National Clinical Research Center for Child HealthDepartment of Genetics and Metabolism, Children’s Hospital of Zhejiang University School of Medicine, National Clinical Research Center for Child HealthDepartment of Genetics and Metabolism, Children’s Hospital of Zhejiang University School of Medicine, National Clinical Research Center for Child HealthSchool of Geography Science and Geomatics Engineering, Suzhou University of Science and TechnologyChildren’s Medical Center, Shenzhen Guangming District People’s HospitalDepartment of Genetics and Metabolism, Children’s Hospital of Zhejiang University School of Medicine, National Clinical Research Center for Child HealthAbstract Purpose To examine public attitudes in China toward storing and using residual dried blood spots (DBS) from newborn screening (NBS). Methods A self-designed questionnaire was administered to expectant or current parents using a non-probability sampling approach that combined convenience and snowball sampling. The survey contained questions about demographics, awareness of NBS, willingness to use DBS for research with or without parental permission, willingness to store, and preferred storage duration. Multiple logistic regression was used to identify factors associated with NBS awareness and support for DBS storage. Results Among 1,490 respondents, 42.5% were aware of NBS. Awareness was higher among those with a master’s degree (vs. junior high school, OR = 4.09, 95% CI: 2.07–8.07), income above 200,000 RMB (vs. less than 50,000, OR = 2.52, 95% CI: 1.75–3.63), and two children (vs. none, OR = 2.28, 95% CI: 1.48–3.52). Support for DBS use in research was 77.5% with parental permission and 52.0% without. Parents very willing to use DBS for research were more likely to support storage with permission (aOR = 30.11, 95% CI: 12.19–74.35) and without (aOR = 5.61, 95% CI: 2.09–15.07). Preference for indefinite storage was associated with higher support for storage than preference for a set period (aOR = 5.11, 95% CI: 3.43–7.63). Conclusion In our study, less than half were aware of NBS, yet most supported DBS use for research with consent. NBS awareness, positive research attitudes, and preference for long-term storage were linked to greater willingness to store DBS. Interventions should prioritize standardized consent procedures, prenatal education, and flexible storage options that accommodate diverse preferences.https://doi.org/10.1186/s12910-025-01240-2Newborn screeningDried bloodspotsResearchStorageAttitude |
| spellingShingle | Xiaoshan Yin Peiyao Wang Yaru Liu Kaixing Le Ziyan Cen Qimin He Benqing Wu Xinwen Huang Public attitudes toward the research use and storage of residual dried blood spots from newborn screening in China BMC Medical Ethics Newborn screening Dried bloodspots Research Storage Attitude |
| title | Public attitudes toward the research use and storage of residual dried blood spots from newborn screening in China |
| title_full | Public attitudes toward the research use and storage of residual dried blood spots from newborn screening in China |
| title_fullStr | Public attitudes toward the research use and storage of residual dried blood spots from newborn screening in China |
| title_full_unstemmed | Public attitudes toward the research use and storage of residual dried blood spots from newborn screening in China |
| title_short | Public attitudes toward the research use and storage of residual dried blood spots from newborn screening in China |
| title_sort | public attitudes toward the research use and storage of residual dried blood spots from newborn screening in china |
| topic | Newborn screening Dried bloodspots Research Storage Attitude |
| url | https://doi.org/10.1186/s12910-025-01240-2 |
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