The DOI matches its Crossref record.
International guidelines on biobank research leave researchers in ambiguity: why is this so?
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As illustrated by current US regulations, the result of non-specific and non-harmonized regulations has sometimes been ambiguity, inadvertent constraints on research access, and research proceeding without consent.
“As illustrated by current US regulations, the result has sometimes been ambiguity, inadvertent constraints on research access, and research proceeding without consent (40, 47, 69).”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [40]
Regulations and guidelines concerning informed consent are not necessarily specific to biospecimen research, nor are they harmonized.
“Furthermore, regulations and guidelines concerning informed consent are not necessarily specific to biospecimen research, nor are they harmonized (40, 59).”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [40]
Citations
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Still being checked.
Research works printed but not linked: 20
- Council of Europe. Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: convention on human rights and biomedicine, CETS no. 164. Oviedo: Council of Europe; 1997. · DOI
- Hansson MG, Dillner J, Bartram CR, et al. Should donors be allowed to give broad consent to future biobank research? Lancet Oncol. 2006;7(3):266–9. · DOI · Paper page
- Lunshof J, Chadwick R, Vorhaus D, et al. From genetic privacy to open consent? Nat Rev Genet. 2008;9:406–11. · DOI
- Arnason V. Coding and consent: moral challenges of the database project in Iceland. Bioethics. 2004;18:27–49. · DOI
- Knoppers BM. Biobanking: international norms. J Law Med Ethics. 2005;33:7–14. · DOI
- Cambon-Thomsen A, Rial-Sebbag E, Knoppers BM. Trends in ethical and legal frameworks for the use of human biobanks. Eur Respir J. 2007;30:373–82. · DOI
- Council for International Organizations of Medical Sciences. International ethical guidelines for biomedical research involving human subjects. Geneva: CIOMS; 2002.
- Skloot R. The immortal life of Henrietta Lacks. New York: Crown Publishing Group; 2010.
- Javitt G. Why not take all of me? Reflections on the immortal life of Henrietta Lacks and the status of participants in research using human specimens. Minn J L Sci Tech. 2010;11(2):713–55.
- Knoppers BM, Chadwick R. Human genetic research: emerging trends in ethics. Nat Rev Genet. 2005;6:75–9. · DOI
- Chadwick R, Berg K. Solidarity and equity: new ethical frameworks for genetic databases. Nat Rev Genet. 2001;2:318–21. · DOI
- Rothstein MA. Is deidentification sufficient to protect health privacy in research? Am J Bioeth. 2010;10(9):3–11. · DOI
- Greely HT. To the barricades! Am J Bioeth. 2010;10(9):1–2. · DOI
- Council for International Organizations of Medical Sciences. International ethical guidelines for epidemiological studies. Geneva: CIOMS; 2008.
- European Society of Human Genetics. Data storage and DNA banking for biomedical research: technical, social and ethical issues. Recommendations of the European society of human genetics. Eur J Hum Genet. 2003;11(Suppl 2):S8–10.
- Hansson MG, Chadwick R. Is medical ethics doing its job? J Intern Med. 2011;269(4):366–9. · DOI
- Whitney SN, Schneider CE. Viewpoint: a method to estimate the cost in lives of ethics board review of biomedical research. J Intern Med. 2011;269(4):396–402. · DOI
- Noble S, Donovan J, Turner E, et al. Feasibility and cost of obtaining informed consent for essential review of medical records in large-scale health services research. J Health Serv Res Policy. 2009;14:77–81. · DOI
- Aagaard-Tillery K, Sibai B, Spong CY, et al. Sample bias among women with retained DNA samples for future genetic studies. Obstet Gynecol. 2006;108(5):1115–20. · DOI
- Arruda-Olson AM, Weston SA, Fridley BL, et al. Participation bias and its impact on the assembly of a genetic specimen repository for a myocardial infarction cohort. Mayo Clin Proc. 2007;82(10):1185–91. · DOI
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
“Furthermore, regulations and guidelines concerning informed consent are not necessarily specific to biospecimen research, nor are they harmonized (40, 59).”
Background
Metadata
- Authors
- Forsberg, J. S., Hansson, M. G., & Evers, K.
- Affiliations
- Uppsala University (SE)
- Corresponding author
- Forsberg, Joanna Stjernschantz
- Venue
- European Journal of Epidemiology
- Published
- 2013-06
- Volume
- 28
- Issue
- 6
- Pages
- 449-451
- ISSN
- 0393-2990 (ISSN-L)
- 1573-7284
- OpenAlex
- W2079170690
- Cited by
- 16
- References
- 0
- Citations by year
- 2024: 1 · 2022: 1 · 2021: 1 · 2020: 2 · 2016: 1 · 2015: 4 · 2014: 4 · 2013: 2
- FWCI
- 3.76
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- www.springer.com/tdm (tdm)
- Locations
- European Journal of Epidemiology (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Nursing › Issues, ethics and legal aspects › Biomedical Ethics and Regulation
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- biobanks, research leave, international guidelines, research ethics, biobank governance
- MeSH terms
- Humans, Informed Consent, Research Personnel, Guidelines as Topic, Biological Specimen Banks, Biomedical Research
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