BMC Medical Ethics 15 (1):80 (2014)
Authors |
|
Abstract |
In order to ensure an adequate and ongoing protection of individuals participating in scientific research, the impacts of new biomedical technologies, such as Next Generation Sequencing , need to be assessed. In this light, a necessary reexamination of the ethical and legal structures framing research could lead to requisite changes in informed consent modalities. This would have implications for Institutional Review Boards , who bear the responsibility of guaranteeing that participants are verifiably informed, and in sufficient detail, to understand the reality of genetic research as it is practiced now. Current literature allowed the identification of key emergent themes related to the consent process when NGS was used in a research setting
|
Keywords | Participants’ protection Institutional review boards Next generation sequencing Secondary use Recontacting participants Data sharing Genetic research Informed consent Vulnerable populations Mental health Brain disorders |
Categories | (categorize this paper) |
DOI | 10.1186/1472-6939-15-80 |
Options |
![]() ![]() ![]() ![]() |
Download options
References found in this work BETA
Ethical Implications of the Use of Whole Genome Methods in Medical Research.Jane Kaye, Paula Boddington, Jantina de Vries, Naomi Hawkins & Karen Melham - unknown
Handling Ethical, Legal and Social Issues in Birth Cohort Studies Involving Genetic Research: Responses From Studies in Six Countries.Nola M. Ries, Jane LeGrandeur & Timothy Caulfield - 2010 - BMC Medical Ethics 11 (1):4.
Use of Next Generation Sequencing Technologies in Research and Beyond: Are Participants with Mental Health Disorders Fully Protected? [REVIEW]Groisman Iris Jaitovich, Mathieu Ghislaine & Godard Beatrice - 2012 - BMC Medical Ethics 13 (1):36-.
Citations of this work BETA
Consenting for Current Genetic Research: Views of Canadian Institutional Review Board Members.Iris Jaitovich Groisman & Beatrice Godard - 2015 - Journal of Clinical Research and Bioethics 6 (4).
Similar books and articles
Use of Next Generation Sequencing Technologies in Research and Beyond: Are Participants with Mental Health Disorders Fully Protected? [REVIEW]Groisman Iris Jaitovich, Mathieu Ghislaine & Godard Beatrice - 2012 - BMC Medical Ethics 13 (1):36-.
Genetic Research, Adolescents, and Informed Consent.Robert F. Weir & Jay R. Horton - 1995 - Theoretical Medicine and Bioethics 16 (4).
Can Informed Consent to Research Be Adapted to Risk?Danielle Bromwich & Annette Rid - 2015 - Journal of Medical Ethics 41 (7):521-528.
Ethical Aspects of Research Into Alzheimer Disease. A European Delphi Study Focused on Genetic and Non-Genetic Research.A. van der Vorm, M. J. F. J. Vernooij-Dassen, P. G. Kehoe, M. G. M. O. Rikkert, E. van Leeuwen & W. J. M. Dekkers - 2009 - Journal of Medical Ethics 35 (2):140-144.
DNA Databanks and Consent: A Suggested Policy Option Involving an Authorization Model. [REVIEW]Timothy Caulfield, Ross Upshur & Abdallah Daar - 2003 - BMC Medical Ethics 4 (1):1-4.
Building on Relationships of Trust in Biobank Research.M. G. Hansson - 2005 - Journal of Medical Ethics 31 (7):415-418.
The Adequacy of Informed Consent Forms in Genetic Research in Oman: A Pilot Study.Asya Al-Riyami, Deepali Jaju, Sanjay Jaju & Henry J. Silverman - 2011 - Developing World Bioethics 11 (2):57-62.
Analysis of the Status of Informed Consent in Medical Research Involving Human Subjects in Public Hospitals in Shanghai.W. Jianping, L. Li, D. Xue, Z. Tang, X. Jia, R. Wu, Y. Xi, T. Wang & P. Zhou - 2010 - Journal of Medical Ethics 36 (7):415-419.
If No Means No, Does Yes Mean Yes? Consenting to Research Intimacies.Julia O'Connell Davidson - 2008 - History of the Human Sciences 21 (4):49-67.
The Limits of Consent: A Socio-Ethical Approach to Human Subject Research in Medicine.Oonagh Corrigan (ed.) - 2009 - Oxford University Press.
Motivating Donors to Genetic Research? Anthropological Reasons to Rethink the Role of Informed Consent.Klaus Hoeyer & Niels Lynöe - 2005 - Medicine, Health Care and Philosophy 9 (1):13-23.
Social Research in Sport (and Beyond): Notes on Exceptions to Informed Consent.Scott Fleming - 2013 - Research Ethics 9 (1):32-43.
Analytics
Added to PP index
2014-11-20
Total views
21 ( #492,196 of 2,411,471 )
Recent downloads (6 months)
10 ( #66,797 of 2,411,471 )
2014-11-20
Total views
21 ( #492,196 of 2,411,471 )
Recent downloads (6 months)
10 ( #66,797 of 2,411,471 )
How can I increase my downloads?
Downloads