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Legal & ethical compliance when sharing biospecimen
SLU-Global Bioinformatics Centre, Department of Animal Breeding and Genetics, Swedish University of Agricultural Sciences, Sweden..
SLU-Global Bioinformatics Centre, Department of Animal Breeding and Genetics, Swedish University of Agricultural Sciences, Sweden..
Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0001-7509-4804
2018 (English)In: Briefings in Functional Genomics & Proteomics, ISSN 2041-2649, E-ISSN 2041-2657, Vol. 17, no 1, p. 1-7Article, review/survey (Refereed) Published
Abstract [en]

When obtaining samples from biobanks, resolving ethical and legal concerns is a time-consuming task where researchers need to balance the needs of privacy, trust and scientific progress. The Biobanking and Biomolecular Resources Research Infrastructure-large Prospective Cohorts project has resolved numerous such issues through intense ommunication between involved researchers and experts in its mission to unite large  rospective study sets in Europe. To facilitate efficient communication, it is useful for onexperts to have an at least basic understanding of the regulatory systemformanaging biological samples. Laws regulating research oversight are based on national law and normally share core principles founded on international charters. In interview studies among donors, chief concerns are privacy, efficient sample utilization and access to information generated fromtheir samples. Despite a lack of clear evidence regarding which concern takes precedence, scientific as well as public discourse has largely focused on privacy concerns and the right of donors to control the usage of their samples. It is therefore important to  roactively deal with ethical and legal issues to avoid complications that delay or prevent samples from being accessed. To help biobank professionals avoid making unnecessary mistakes, we have developed this basic primer covering the relationship between ethics and law, the concept of informed consent and considerations for returning findings to donors.

Place, publisher, year, edition, pages
Oxford: Oxford University Press, 2018. Vol. 17, no 1, p. 1-7
Keywords [en]
Law, ethics, dataprotection, informed consent
National Category
Law and Society Medical Biotechnology (with a focus on Cell Biology (including Stem Cell Biology), Molecular Biology, Microbiology, Biochemistry or Biopharmacy) Medical Ethics
Identifiers
URN: urn:nbn:se:uu:diva-346080DOI: 10.1093/bfgp/elx008ISI: 000423309600001PubMedID: 28460118OAI: oai:DiVA.org:uu-346080DiVA, id: diva2:1190292
Projects
B3Africa
Funder
EU, FP7, Seventh Framework Programme, 313010EU, Horizon 2020, 654404Available from: 2018-03-14 Created: 2018-03-14 Last updated: 2018-05-16Bibliographically approved

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