BMC Medical Ethics 7 (1):1-9 (2006)
Background The work of Research Ethics Boards (REBs), especially when involving genetics research and biobanks, has become more challenging with the growth of biotechnology and biomedical research. Some REBs have even rejected research projects where the use of a biobank with coded samples was an integral part of the study, the greatest fear being the lack of participant protection and uncontrolled use of biological samples or related genetic data. The risks of discrimination and stigmatization are a recurrent issue. In light of the increasing interest in biomedical research and the resulting benefits to the health of participants, it is imperative that practical solutions be found to the problems associated with the management of biobanks: namely, protecting the integrity of the research participants, as well as guaranteeing the security and confidentiality of the participant's information. Methods We aimed to devise a practical and efficient model for the management of biobanks in biomedical research where a medical archivist plays the pivotal role as a data-protection officer. The model had to reduce the burden placed on REBs responsible for the evaluation of genetics projects and, at the same time, maximize the protection of research participants. Results The proposed model includes the following: 1) a means of protecting the information in biobanks, 2) offers ways to provide follow-up information requested about the participants, 3) protects the participant's confidentiality and 4) adequately deals with the ethical issues at stake in biobanking. Conclusion Until a governmental governance body is established in Quebec to guarantee the protection of research participants and establish harmonized guidelines for the management of biobanks in medical research, it is definitely up to REBs to find solutions that the present lack of guidelines poses. The model presented in this article offers a practical solution on a day-to-day basis for REBs, as well as researchers by promoting an archivist to a pivotal role in the process. It assures protection of all participants who altruistically donate their samples to generate and improve knowledge for better diagnosis and medical treatment.
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
References found in this work BETA
No references found.
Citations of this work BETA
From the Bench to the Bedside in the Big Data Age: Ethics and Practices of Consent and Privacy for Clinical Genomics and Personalized Medicine.Peter A. Chow-White, Maggie MacAulay, Anita Charters & Paulina Chow - 2015 - Ethics and Information Technology 17 (3):189-200.
Maintaining Respect and Fairness in the Usage of Stored Shared Specimens.Mduluza Takafira, Midzi Nicholas, Duruza Donold & Ndebele Paul - 2013 - BMC Medical Ethics 14 (Suppl 1):S7.
Similar books and articles
Biobanking Research on Oncological Residual Material: A Framework Between the Rights of the Individual and the Interest of Society. [REVIEW]Luciana Caenazzo, Pamela Tozzo & Renzo Pegoraro - 2013 - BMC Medical Ethics 14 (1):17.
Reconsidering the Value of Consent in Biobank Research.Judy Allen & Beverley Mcnamara - 2011 - Bioethics 25 (3):155-166.
Biobank Research and the Right to Privacy.Lars Øystein Ursin - 2008 - Theoretical Medicine and Bioethics 29 (4):267-285.
Biobanks--When is Re-Consent Necessary?K. S. Steinsbekk & B. Solberg - 2011 - Public Health Ethics 4 (3):236-250.
Withdrawing From Research: A Rethink in the Context of Research Biobanks. [REVIEW]Søren Holm - 2011 - Health Care Analysis 19 (3):269-281.
Moving Toward Evidence-Based Human Participant Protection.Michael McDonald & Susan Cox - 2009 - Journal of Academic Ethics 7 (1-2):1-16.
Going Boldly Where No One Has Gone Before? How Confidentiality Risk Aversion is Killing Research on Sensitive Topics.Ted Palys & John Lowman - 2010 - Journal of Academic Ethics 8 (4):265-284.
Alternative Consent Models for Biobanks: The New Spanish Law on Biomedical Research.Antonio Casado Rochdaa & José Antonio Seoane - 2008 - Bioethics 22 (8):440-447.
Grappling with Groups: Protecting Collective Interests in Biomedical Research.Richard R. Sharp & Morris W. Foster - 2007 - Journal of Medicine and Philosophy 32 (4):321 – 337.
Using the Cables Model to Assess and Minimize Risk in Research: Control Group Hazards.Gerald P. Koocher - 2002 - Ethics and Behavior 12 (1):75 – 86.
Ethics Issues with Private Research Ethics Boards: A Breakout Session at the 2009 Ncehr National Conference.Jack Corman Francis Rolleston, Paddi O'Hara Serge Gauthier & Rod Schmaltz - forthcoming - Journal of Academic Ethics.
Biobanks and the Return of Research Results: Out with the Old and In with the New?Ma'N. H. Zawati & Amélie Rioux - 2011 - Journal of Law, Medicine & Ethics 39 (4):614-620.
Evaluating the Science and Ethics of Research on Humans: A Guide for Irb Members.Dennis John Mazur - 2007 - Johns Hopkins University Press.
Added to index2010-11-17
Total downloads19 ( #248,874 of 2,143,561 )
Recent downloads (6 months)2 ( #280,273 of 2,143,561 )
How can I increase my downloads?
There are no threads in this forum
Nothing in this forum yet.