Genes, cells, and biobanks: Yes, there's still a consent problem

PLoS Biol. 2017 Jul 25;15(7):e2002654. doi: 10.1371/journal.pbio.2002654. eCollection 2017 Jul.

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.

Publication types

  • Review

MeSH terms

  • Bioethical Issues*
  • Biological Specimen Banks / economics
  • Biological Specimen Banks / ethics
  • Biological Specimen Banks / legislation & jurisprudence*
  • Biomedical Research / economics
  • Biomedical Research / ethics
  • Biomedical Research / legislation & jurisprudence*
  • Cell Line
  • Genes*
  • Humans
  • Informed Consent / legislation & jurisprudence*
  • Informed Consent / standards
  • Legislation, Medical / trends
  • Patient Rights
  • Privacy
  • Public Opinion
  • Social Discrimination
  • Technology Transfer
  • 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.