Literature DB >> 34295385

Current Status and Future Challenges of Biobank Research in Malaysia.

Latifah Amin1, Angelina Olesen1, Zurina Mahadi1, Maznah Ibrahim1.   

Abstract

The establishment of MyCohort in 2005 showed that there is a growing interest on the part of the Malaysian government in the creation of biobanks in the country. This project can be considered as the biggest and most comprehensive cohort study in Malaysia, where hundreds of thousands of human samples are stored for epidemiological and biomedical research. However, little is known about the current issues or the situation related to biobank research in Malaysia. There are pressing issues that need answers such as the governance of the national biobank as well as other privately owned biobanks in the nation, the public perspectives and perceptions regarding biobanks, and other matters such as the ethical, legal, and social issues related to biobank research. This article will highlight the status and issues related to biobank research in Malaysia and provide suggestions on future research practices that we feel need to be seriously considered. These suggestions are designed to advance and enlighten researchers' knowledge, as well as provide the public with information on issues associated to biobanking. Good governance increases public knowledge and trust, and religious acceptance of biobank research and accountability can lead to increased participation in biobank research. The direct implications of the discussion about the ethical, legal, and social issues of biobanks are pertinent for the foundation of knowledge relating to biobanks, as well as the forward gestures for future medicine for mankind. © National University of Singapore and Springer Nature Singapore Pte Ltd. 2021.

Entities:  

Keywords:  Biobanks; Governance; Healthcare policy; Informed consent; Public trust; Religious acceptance

Year:  2021        PMID: 34295385      PMCID: PMC8245627          DOI: 10.1007/s41649-021-00171-5

Source DB:  PubMed          Journal:  Asian Bioeth Rev        ISSN: 1793-9453


  65 in total

1.  Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.

Authors:  Saskia C Sanderson; Kyle B Brothers; Nathaniel D Mercaldo; Ellen Wright Clayton; Armand H Matheny Antommaria; Sharon A Aufox; Murray H Brilliant; Diego Campos; David S Carrell; John Connolly; Pat Conway; Stephanie M Fullerton; Nanibaa' A Garrison; Carol R Horowitz; Gail P Jarvik; David Kaufman; Terrie E Kitchner; Rongling Li; Evette J Ludman; Catherine A McCarty; Jennifer B McCormick; Valerie D McManus; Melanie F Myers; Aaron Scrol; Janet L Williams; Martha J Shrubsole; Jonathan S Schildcrout; Maureen E Smith; Ingrid A Holm
Journal:  Am J Hum Genet       Date:  2017-02-09       Impact factor: 11.025

2.  Public support and consent preference for biomedical research and biobanking in Jordan.

Authors:  Mamoun Ahram; Areej Othman; Manal Shahrouri
Journal:  Eur J Hum Genet       Date:  2012-09-12       Impact factor: 4.246

3.  Public perception towards biobanking in jordan.

Authors:  Mamoun Ahram; Areej Othman; Manal Shahrouri
Journal:  Biopreserv Biobank       Date:  2012-08       Impact factor: 2.300

Review 4.  Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review.

Authors:  Mahsa Shabani; Louise Bezuidenhout; Pascal Borry
Journal:  Expert Rev Mol Diagn       Date:  2014-09-26       Impact factor: 5.225

5.  Genetic research and biobanks.

Authors:  Don Chalmers
Journal:  Methods Mol Biol       Date:  2011

Review 6.  Stewardship of human biospecimens, DNA, genotype, and clinical data in the GWAS era.

Authors:  Stephen J O'Brien
Journal:  Annu Rev Genomics Hum Genet       Date:  2009       Impact factor: 8.929

7.  Genomic research and wide data sharing: views of prospective participants.

Authors:  Susan Brown Trinidad; Stephanie M Fullerton; Julie M Bares; Gail P Jarvik; Eric B Larson; Wylie Burke
Journal:  Genet Med       Date:  2010-08       Impact factor: 8.822

8.  A review of the key issues associated with the commercialization of biobanks.

Authors:  Timothy Caulfield; Sarah Burningham; Yann Joly; Zubin Master; Mahsa Shabani; Pascal Borry; Allan Becker; Michael Burgess; Kathryn Calder; Christine Critchley; Kelly Edwards; Stephanie M Fullerton; Herbert Gottweis; Robyn Hyde-Lay; Judy Illes; Rosario Isasi; Kazuto Kato; Jane Kaye; Bartha Knoppers; John Lynch; Amy McGuire; Eric Meslin; Dianne Nicol; Kieran O'Doherty; Ubaka Ogbogu; Margaret Otlowski; Daryl Pullman; Nola Ries; Chris Scott; Malcolm Sears; Helen Wallace; Ma'n H Zawati
Journal:  J Law Biosci       Date:  2014-02-25

9.  Return of results in genomic biobank research: ethics matters.

Authors:  Susan M Wolf
Journal:  Genet Med       Date:  2013-02       Impact factor: 8.822

10.  Qualitative study of knowledge and attitudes to biobanking among lay persons in Nigeria.

Authors:  Michael A Igbe; Clement A Adebamowo
Journal:  BMC Med Ethics       Date:  2012-10-16       Impact factor: 2.652

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