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Cited by 21Ethics in Clinical ResearchMedical and Health Sciences ResearchBiomedical Ethics and Regulation

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Public concerns regarding the storage and secondary uses of residual newborn bloodspots: an analysis of print media, legal cases, and public engagement activities

Open access
Cunningham, Shannon, O’Doherty, Kieran C., Sénécal, Karine, Secko, David, Avard, Denise·2015·Journal of Community Genetics
DOI 10.1007/s12687-014-0206-0PMC PMC4356669
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Abstract

Recently, public concerns have been expressed regarding the non-consented storage and secondary research uses of residual newborn bloodspot (RBS) samples. The purpose of this paper is to examine public responses to the storage and secondary uses of RBS that can be identified through analysis of media, legal cases, and documented public engagement activities. Coverage in the examined print media confirmed the importance of RBS to journalists and those people who expressed their concerns to these journalists. Several lawsuits, brought by parents concerned about the storage of newborn bloodspots, placed the practice of storing NBS into the spotlight. This resulted in controversial debates and the mandatory destruction of millions of samples. Analysis of public engagement activities across several jurisdictions indicated that across (inter)national boundaries there are common elements to what is perceived as inappropriate governance of RBS. Public concerns were grouped into five main themes: trust, transparency, confidentiality, ownership, and stigmatization/discrimination. The results of our analysis help to make a compelling case for placing citizens at the center of the debate and developing policy about the storage and secondary uses of newborn bloodspots.

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Cited by

Sorted by citations

  • Lessons from HeLa Cells: The Ethics and Policy of Biospecimens

    Beskow, L. M. (2016) · Annual Review of Genomics and Human Genetics · doi:10.1146/annurev-genom-083115-022536 · Cited by 146

    “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).”
    Background

Metadata

Authors
Cunningham, S., O’Doherty, K. C., Sénécal, K., Secko, D., & Avard, D.
Affiliations
  • University of Alberta (CA)
  • University of Guelph (CA)
  • McGill University (CA)
Corresponding author
O’Doherty, Kieran C.
ORCID
O’Doherty, Kieran C.
Venue
Journal of Community Genetics
Publisher
Springer Science and Business Media LLC
Published
2014-12-23
Volume
6
Issue
2
Pages
117-128
ISSN
  • 1868-310X (ISSN-L)
  • 1868-6001
DOI
10.1007/s12687-014-0206-0
PMC
PMC4356669
OpenAlex
W2003875114
Cited by
21
References
1
Citations by year
2026: 2 · 2024: 3 · 2023: 4 · 2022: 3 · 2021: 1 · 2020: 2 · 2019: 1 · 2017: 1 · 2016: 3 · 2015: 1
FWCI
1.53
Type
journal article
Language
en
Open access
Licence
www.springer.com/tdm (tdm)
Locations
  • Journal of Community Genetics (publishedVersion)
  • PubMed Central (publishedVersion)
  • PubMed (publishedVersion)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Social Sciences › Law › Medical and Health Sciences Research
  • Health Sciences › Nursing › Issues, ethics and legal aspects › Biomedical Ethics and Regulation
Keywords
newborn screening, informed consent, public trust, transparency, confidentiality, data ownership, stigmatization, discrimination, media coverage, litigation, citizen participation

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