ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)
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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Reconsidering Dynamic Consent in Biobanking: Ethical and Political Consequences of Transforming Research Participants Into ICT Users (Papers: Alexandra Soulier | June 2019)0

Posted by Admin in on May 14, 2020
 

Abstract:
Biobanks are not new. However, the scope of their application is growing, especially in genomics. Biobanks are also currently being reorganized to enable more genomic samples to be made available for different types of studies. Some future uses of the biobanks cannot be anticipated.

Keywords:
Genomics, Bioinformatics, Real-time systems, Internet, Information and communication technology, Law

Soulier, A. (2019) “Reconsidering Dynamic Consent in Biobanking: Ethical and Political Consequences of Transforming Research Participants Into ICT Users,” in IEEE Technology and Society Magazine, vol. 38, no. 2, pp. 62-70, June 2019.
Publisher: https://ieeexplore.ieee.org/document/8733941å

Reconsidering Dynamic Consent in Biobanking: Ethical and Political Consequences of Transforming Research Participants Into ICT Users (Papers: Alexandra Soulier | June 2019)0

Posted by Admin in on April 13, 2020
 

Abstract:
Biobanks are not new. However, the scope of their application is growing, especially in genomics. Biobanks are also currently being reorganized to enable more genomic samples to be made available for different types of studies. Some future uses of the biobanks cannot be anticipated.

Soulier, A. (2019) Reconsidering Dynamic Consent in Biobanking: Ethical and Political Consequences of Transforming Research Participants Into ICT Users. IEEE Technology and Society Magazine, 38(2) 62-70, June 2019.
https://ieeexplore.ieee.org/document/8733941

Informed consent in international normative texts and biobanking policies: Seeking the boundaries of broad consent (Papers: Palmira Granados Moreno and Yann Joly | 2016)0

Posted by Admin in on March 11, 2020
 

Abstract
With the progress in bioinformatics, genomics, and epidemiology, biobanks, as repositories of populations’ biological samples as well as of personal and medical information, are becoming an essential research tool. Despite the potential benefits biobanks may bring and the options presented by some of the current biobanks’ consent policies, there remain ethical concerns regarding the autonomy and dignity of research participants if consent is not fully informed as dictated in the terms of traditional informed consent. This article aims at providing an overview of the approaches taken by the main international norms with respect to informed and broad consent and how well these norms are integrated by biobanks or biobank consortia. We conclude that broad consent could be an important tool to achieve the benefits of large-scale biobanks projects. If it is to be accepted, its regulation and implementation need to be mindful of the participant’s dignity and autonomy and sensitive to the need for international coherence and harmonization.

Keywords
Broad consent, comparative analysis of informed consent practices in international biobanks, international biobanks, international biobanks informed consent policies, international biobanks informed consent regulations

Moreno, P.G. and Joly, Y (2016) Informed consent in international normative texts and biobanking policies: Seeking the boundaries of broad consent.  Medical Law International.  7(35) https://doi.org/10.1177/0968533215626773
Publisher: https://journals.sagepub.com/doi/10.1177/0968533215626773

Sample and data sharing barriers in biobanking: consent, committees, and compromises (Paper: Flora Colledge MA, et al | December 2013)0

Posted by Admin in on January 2, 2020
 

Abstract

The discussion in this paper is not particularly new or surprising but it does highlight yet again that HRECs can often be out of touch with donors wishes.  We have included links to ten other papers on consent and biobanking.

The ability to exchange samples and data is crucial for the rapidly growth of biobanking. However, sharing is based on the assumption that the donor has given consent to a given use of her or his sample. Biobanking stakeholders, therefore, must choose 1 of 3 options: obtain general consent enabling multiple future uses before taking a sample from the donor, try to obtain consent again before sharing a previously obtained sample, or look for a legally endorsed way to share a sample without the donor’s consent. In this study, we present the results of 36 semistructured qualitative interviews with Swiss biobanking stakeholders regarding these options and the role of ethics committees in the process of authorizing sharing. Our results show that despite a lack of legal or guideline-based barriers to general consent, some stakeholders and ethics committees have reservations about this method of consent. In most cases, however, a general consent form is already in use. Many interviewees describe processes involving the ethics committees as time-consuming and cumbersome and their requirements as too demanding for donors/patients. Greater awareness of donors’ opinions and preferences and the content of guidelines and recommendations could therefore be helpful for a better justified perspective of biobanking stakeholders and ethical committee members, equally. Finally, it may be necessary to differentiate between procedures governing future samples, where general consent is clearly desirable, and the use of old yet still relevant samples, where the option of using them without consent can be highly beneficial for research.
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Keywords
Biobank, Informed consent, Ethics committee, Data sharing, Sample sharing

Colledge F, Persson K, Elger B, Shaw D. (2014) Sample and data sharing barriers in biobanking: consent, committees, and compromises. Annals of Diagnostic Pathology 18:78-81
Publisher: https://www.sciencedirect.com/science/article/abs/pii/S1092913413001524?via%3Dihub

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