Review
doi: 10.1146/annurev-genom-082509-141711.
Informed consent in genomics and genetic research
Affiliations
- PMID: 20477535
- PMCID: PMC3216676
- DOI: 10.1146/annurev-genom-082509-141711
Item in Clipboard
Review
Informed consent in genomics and genetic research
Annu Rev Genomics Hum Genet.
2010.
Abstract
There are several features of genetic and genomic research that challenge established norms of informed consent. In this paper, we discuss these challenges, explore specific elements of informed consent for genetic and genomic research conducted in the United States, and consider alternative consent models that have been proposed. All of these models attempt to balance the obligation to respect and protect research participants with the larger social interest in advancing beneficial research as quickly as possible.
Similar articles
-
A framework for tiered informed consent for health genomic research in Africa.Nat Genet. 2019 Nov;51(11):1566-1571. doi: 10.1038/s41588-019-0520-x. Nat Genet. 2019. PMID: 31659323 Free PMC article.
-
Practical guidance on informed consent for pediatric participants in a biorepository.Mayo Clin Proc. 2014 Nov;89(11):1471-80. doi: 10.1016/j.mayocp.2014.07.006. Epub 2014 Sep 26. Mayo Clin Proc. 2014. PMID: 25264176 Free PMC article. No abstract available.
-
Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countries.BMC Med Ethics. 2010 Mar 23;11:4. doi: 10.1186/1472-6939-11-4. BMC Med Ethics. 2010. PMID: 20331891 Free PMC article. Review.
-
Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents.J Med Ethics. 2016 Feb;42(2):132-7. doi: 10.1136/medethics-2015-102796. Epub 2015 Dec 7. J Med Ethics. 2016. PMID: 26644426 Free PMC article.
-
Consent, ethics and genetic biobanks: the case of the Athlome project.BMC Genomics. 2017 Nov 14;18(Suppl 8):830. doi: 10.1186/s12864-017-4189-1. BMC Genomics. 2017. PMID: 29143655 Free PMC article. Review.
Cited by
-
Informed Consent in Biomedical Research.Comput Struct Biotechnol J. 2019 Mar 25;17:463-474. doi: 10.1016/j.csbj.2019.03.010. eCollection 2019. Comput Struct Biotechnol J. 2019. PMID: 31007872 Free PMC article. Review.
-
Returning genetic research results: study type matters.Per Med. 2013 Jan;10(1):27-34. doi: 10.2217/pme.12.109. Per Med. 2013. PMID: 24077424 Free PMC article.
-
Informed consent for biobanking: consensus-based guidelines for adequate comprehension.Genet Med. 2015 Mar;17(3):226-33. doi: 10.1038/gim.2014.102. Epub 2014 Aug 21. Genet Med. 2015. PMID: 25144889 Free PMC article.
-
Informed consent for exome sequencing research in families with genetic disease: the emerging issue of incidental findings.Am J Med Genet A. 2014 Nov;164A(11):2745-52. doi: 10.1002/ajmg.a.36706. Epub 2014 Sep 22. Am J Med Genet A. 2014. PMID: 25251809 Free PMC article.
-
Trends in Population-Based Studies: Molecular and Digital Epidemiology (Review).Sovrem Tekhnologii Med. 2022;14(4):60-70. doi: 10.17691/stm2022.14.4.07. Epub 2022 Jul 29. Sovrem Tekhnologii Med. 2022. PMID: 37179982 Free PMC article. Review.
References
-
- Abadie A, Gay S. The impact of presume consent legislation on cadaveric organ donation: a cross-country study. J Health Econ. 2006;25:599–620. - PubMed
-
- Agulnik M, Oza AM, Pond GR, Siu LL. Impact and perceptions of mandatory tumor biopsies for correlative studies in clinical trials of novel anticancer agents. J Clin Oncol. 2006;24:4801–7. - PubMed
-
- Annas G. Rules for research on human genetic variation- lessons from Iceland. New Engl J Med. 2000;342:1830–3. - PubMed
-
- Arnason V. Coding and consent: moral challenges of the database project in Iceland. Bioethics. 2004;18:27–49. - PubMed
-
- Artizzu F. The informed consent aftermath of the genetic revolution. An Italian example of implementation. Med Health Care and Philos. 2008;11:181–90. - PubMed
Publication types
MeSH terms
Grants and funding
LinkOut - more resources
Full Text Sources
