Abstract
From a research perspective, the interest in biobanking continues to intensify. Governments and industry have invested heavily in biobanks, as exemplified by initiatives like the United Kingdom Biobank and United States' Precision Medicine Initiative. But despite this enthusiasm, many profound legal and ethical challenges remain unresolved. Indeed, there continues to be disagreements about how best to obtain consent and the degree and nature of control that research participants retain over donated samples and health information. Emerging social trends-including concerns about commercialization and perceived rights of continuing control ("biorights")-seem likely to intensify these issues.
MeSH terms
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Bioethical Issues*
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Biological Specimen Banks / economics
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Biological Specimen Banks / ethics
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Biological Specimen Banks / legislation & jurisprudence*
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Biomedical Research / economics
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Biomedical Research / ethics
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Biomedical Research / legislation & jurisprudence*
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Cell Line
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Genes*
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Humans
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Informed Consent / legislation & jurisprudence*
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Informed Consent / standards
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Legislation, Medical / trends
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Patient Rights
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Privacy
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Public Opinion
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Social Discrimination
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Technology Transfer
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Trust
Grants and funding
The PACE’OMICS project
https://www.genomecanada.ca/en/paceomics-personalized-accessible-cost-effective-applications-omics-technologies (grant number 444CA CIHR GPH129330). Funders supporting PACE’OMICS include Genome Canada, Genome Alberta, the Canadian Institutes for Health Research, and Alberta Health & Wellness. The Interdisciplinary Chronic Disease Collaboration (ICDC)
www.icdc.ca (grant number AIHS CRIO 10007987). The ICDC is funded by the Alberta Innovates Health Solutions CRIO Team Grants Program. The Canadian National Transplant Research Program—Canadian Institutes for Health Research
https://www.cntrp.ca (grant number ZA954 RES0023089). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.