Public Attitudes Regarding the Use of Residual Newborn Screening Specimens for Research
Open accessAbstract
BACKGROUND AND OBJECTIVES: Many state newborn screening (NBS) programs retain residual NBS bloodspots after the completion of screening. Potential uses for residual specimens include laboratory quality assurance, biomedical research, and, rarely, forensic applications. Our objective was to evaluate public opinion about the policies and practices relevant to the retention and use of residual bloodspots for biomedical research. METHODS: A total of 3855 respondents were recruited using 3 methods: focus groups (n = 157), paper or telephone surveys (n = 1418), and a Knowledge Networks panel (n = 2280). Some participants (n = 1769) viewed a 22-minute movie about the retention and use of residual specimens while other participants were provided only written information about this practice. All participants were surveyed using a 38-item questionnaire. RESULTS: A diverse set of participants was recruited. Respondents were very supportive of NBS in general and accepting of the use of residual bloodspots for important research activities. Respondents were evenly divided on the acceptability of NBS without parental permission, but the majority of respondents supported the use of an “opt-in” process for parental permission for residual bloodspot retention and use. Viewing the educational movie was associated with greater support for bloodspot retention and use. CONCLUSIONS: Our results show that the general public surveyed here was supportive of NBS and residual sample retention and research use. However, there was a clear preference for an informed permission process for parents regarding these activities. Education about NBS was associated with a higher level of support and may be important to maintain public trust in these important programs.
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Public concern about biospecimen research and informed consent has already been stoked not only by the story of Henrietta Lacks, but also by lawsuits over the research use of newborn screening samples and biospecimens from indigenous populations.
“These developments come at a time when public concern about biospecimen research and informed consent has already been stoked not only by the story of Henrietta Lacks, but also by lawsuits over the research use of newborn screening samples (18, 30) and biospecimens from indigenous populations (28, 95).”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [18]
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References 19 · Cited by 68
Research works printed but not linked: 12
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- Authors
- Botkin, J. R., Rothwell, E., Anderson, R., Stark, L., Goldenberg, A., Lewis, M., Burbank, M., & Wong, B.
- Affiliations
- University of Utah (US)
- Case Western Reserve University (US)
- Johns Hopkins University (US)
- Venue
- Pediatrics
- Publisher
- American Academy of Pediatrics (AAP)
- Published
- 2012-02-01
- Volume
- 129
- Issue
- 2
- Pages
- 231-238
- ISSN
- 0031-4005 (ISSN-L)
- 1098-4275
- PMC
- PMC3269111
- OpenAlex
- W2098916651
- Cited by
- 68
- References
- 19
- Citations by year
- 2026: 1 · 2025: 2 · 2024: 2 · 2023: 3 · 2022: 3 · 2021: 3 · 2020: 3 · 2019: 2 · 2018: 3 · 2017: 2 · 2016: 9 · 2015: 7 · 2014: 11 · 2013: 12 · 2012: 5
- FWCI
- 10.82
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- PEDIATRICS (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Utah Department of Health
- National Institutes of Health
- National Institute on Aging (R01AG058854)
- National Human Genome Research Institute (R01HG058854)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Ethics and Legal Issues in Pediatric Healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- newborn screening, public attitudes, informed consent, parental permission, opt-in consent, public trust
- MeSH terms
- Adult, Aged, Blood Specimen Collection, Blood Stains, Female, Health Education, Humans, Infant, Newborn, Male, Middle Aged, Public Health, Public Opinion, Quality Assurance, Health Care, United States, Neonatal Screening, Focus Groups, Privacy, Parental Consent, Biomedical Research
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