Academic journal article Bulletin of the World Health Organization

A Call for Global Governance of Biobanks/ Un Appel a la Gouvernance Mondiale Des Biobanques/ Un Llamamiento a la Gobernanza Mundial De Los Biobancos

Academic journal article Bulletin of the World Health Organization

A Call for Global Governance of Biobanks/ Un Appel a la Gouvernance Mondiale Des Biobanques/ Un Llamamiento a la Gobernanza Mundial De Los Biobancos

Article excerpt

Introduction

The introduction of genomic technology has led to a biomedical revolution. Whole-genome sequencing and genome-wide association studies have become powerful tools to investigate environmental, genetic, social and behavioural determinants of human diseases. (1,2) Many countries have set up biobanks to collect human biological samples and their associated data for genomic research and public health purposes. To maximize the utilization of biobanking resources, regional and transnational biobank networks, such as the BBMRI-ERIC (Biobanking and Biomolecular Resources Research Infrastructure), the International HapMap Project and the International Cancer Genome Consortium, have been established. (3-5) Although genetics and genomics have contributed to better understanding of causes and mechanisms of human diseases, some researchers are concerned that genetic research conducted to date has mainly focused on the health needs of high-income countries, thus increasing health inequity between people in poor and rich nations. (6-8) Low- and middle-income countries are benefiting less than high-income countries from the applications of epidemiological and genetic research. It has been suggested that the disadvantage could partly be attributable to the lack of biobanks and large cohort studies in poorer countries. (9) To find indigenous solutions to health improvement, biobanks have recently been set up in several developing countries (e.g. China, Gambia, India and Mexico). (10-14)

The establishment and proper running of a biobank can be perceived as an overwhelming task, since researchers have to consider a series of ethical, legal and social issues, such as informed consent, benefit sharing, confidentiality, ownership, commercialization and public participation. (15-18) Building transnational biobank networks is even more difficult, as these require sharing of samples and interoperability of data in a mutually-applicable ethical and legal framework. However, such frameworks differ between countries. (19) Compared with the situation in high-income countries, where the ethical, legal and social issues of biobanks have been debated, researchers in low- and middle-countries are less experienced in coping with these issues. (12,13,20,21) The fear of exploitation--i.e. unfair distribution of risks and benefits--makes many low- to middle-income countries hesitant about foreign researchers accessing and using their human biological samples and associated data. (22-25) Furthermore, research participants may sometimes not be fully aware of the risks of participation. (22,25) Therefore, the proliferation of biobanks in low- and middle- income countries has led to ethical, cross-border and benefit-sharing issues not witnessed in other human research areas, due to local culture, religious beliefs and poor awareness of developed countries' concept of ethics. (26) These issues may have a negative impact on international research collaborations. In this paper, we argue that it is important to develop a governance framework at the global level to guarantee equity, fairness and justice in biobank collaboration between developing and developed countries.

Biobanks in developing countries

Biobanks currently exist on every continent, including Antarctica, with most located in North America and Europe. (27) However, this landscape is changing rapidly. (4,14) Some countries, including China, Gambia, Jordan, Mexico and South Africa, have placed great effort into building their own biobanks and biobanking networks. (10-14) In Table 1, we present the aim of biobanks with publicly available information and how these biobanks are funded. All the selected biobanks have partnered with facilities in high-income countries. The Kadoorie Study of Chronic Disease in China and the Mexico City Prospective Study collaborate with Oxford's Clinical Trial Service Unit and Epidemiological Studies Unit. (28,29) The KHCCBIO project in Jordan, that will collect cancer specimens within the country and from its neighbouring countries, collaborates with Trinity College Dublin, Biostor Ireland and Accelopment AG, Switzerland. …

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