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Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia?

As with many other countries, Malaysia is also developing and promoting biomedical research to increase the understanding of human diseases and possible interventions. To facilitate this development, there is a significant growth of biobanks in the country to ensure continuous collection of biologic...

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Main Authors: Abdul Aziz, Mohammad Firdaus, Mohd Yusof, Aimi Nadia
Format: Article
Published: Springer 2019
Subjects:
K Law (General)
R Medicine
Online Access:http://eprints.um.edu.my/24250/
https://doi.org/10.1007/s41649-019-00086-2
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spelling my.um.eprints.242502020-04-30T05:53:25Z http://eprints.um.edu.my/24250/ Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia? Abdul Aziz, Mohammad Firdaus Mohd Yusof, Aimi Nadia K Law (General) R Medicine As with many other countries, Malaysia is also developing and promoting biomedical research to increase the understanding of human diseases and possible interventions. To facilitate this development, there is a significant growth of biobanks in the country to ensure continuous collection of biological samples for future research, which contain extremely important personal information and health data of the participants involved. Given the vast amount of samples and data accumulated by biobanks, they can be considered as reservoirs of precious biomedical big data. It is therefore imperative for biobanks to have in place regulatory measures to ensure ethical use of the biomedical big data. Malaysia has yet to introduce specific legislation for the field of biobanking. However, it can be argued that its existing Personal Data Protection Act 2010 (PDPA) has laid down legal principles that can be enforced to protect biomedical big data generated by the biobanks. Consent is a mechanism to enable data subjects to exercise their autonomy by determining how their data can be used and ensure compliance with legal principles. However, there are two main concerns surrounding the current practice of consent in biomedical big data in Malaysia. First, it is uncertain that the current practice would be able to respect the underlying notion of autonomy, and second, it is not in accordance with the legal principles of the PDPA. Scholars have deliberated on different strategies of informed consent, and a more interactive approach has recently been introduced: dynamic consent. It is argued that a dynamic consent approach would be able to address these concerns. © 2019, National University of Singapore and Springer Nature Singapore Pte Ltd. Springer 2019 Article PeerReviewed Abdul Aziz, Mohammad Firdaus and Mohd Yusof, Aimi Nadia (2019) Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia? Asian Bioethics Review, 11 (2). pp. 209-222. ISSN 1793-8759 https://doi.org/10.1007/s41649-019-00086-2 doi:10.1007/s41649-019-00086-2
institution Universiti Malaya
building UM Library
collection Institutional Repository
continent Asia
country Malaysia
content_provider Universiti Malaya
content_source UM Research Repository
url_provider http://eprints.um.edu.my/
topic K Law (General)
R Medicine
spellingShingle K Law (General)
R Medicine
Abdul Aziz, Mohammad Firdaus
Mohd Yusof, Aimi Nadia
Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia?
description As with many other countries, Malaysia is also developing and promoting biomedical research to increase the understanding of human diseases and possible interventions. To facilitate this development, there is a significant growth of biobanks in the country to ensure continuous collection of biological samples for future research, which contain extremely important personal information and health data of the participants involved. Given the vast amount of samples and data accumulated by biobanks, they can be considered as reservoirs of precious biomedical big data. It is therefore imperative for biobanks to have in place regulatory measures to ensure ethical use of the biomedical big data. Malaysia has yet to introduce specific legislation for the field of biobanking. However, it can be argued that its existing Personal Data Protection Act 2010 (PDPA) has laid down legal principles that can be enforced to protect biomedical big data generated by the biobanks. Consent is a mechanism to enable data subjects to exercise their autonomy by determining how their data can be used and ensure compliance with legal principles. However, there are two main concerns surrounding the current practice of consent in biomedical big data in Malaysia. First, it is uncertain that the current practice would be able to respect the underlying notion of autonomy, and second, it is not in accordance with the legal principles of the PDPA. Scholars have deliberated on different strategies of informed consent, and a more interactive approach has recently been introduced: dynamic consent. It is argued that a dynamic consent approach would be able to address these concerns. © 2019, National University of Singapore and Springer Nature Singapore Pte Ltd.
format Article
author Abdul Aziz, Mohammad Firdaus
Mohd Yusof, Aimi Nadia
author_facet Abdul Aziz, Mohammad Firdaus
Mohd Yusof, Aimi Nadia
author_sort Abdul Aziz, Mohammad Firdaus
title Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia?
title_short Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia?
title_full Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia?
title_fullStr Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia?
title_full_unstemmed Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia?
title_sort can dynamic consent facilitate the protection of biomedical big data in biobanking in malaysia?
publisher Springer
publishDate 2019
url http://eprints.um.edu.my/24250/
https://doi.org/10.1007/s41649-019-00086-2
_version_ 1665895223977312256
score 13.211869

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