We are pleased to present the final issue for this calendar year, which has biobanking as a special theme. A number of the original papers that are published in this issue were presented at the Asian Bioethics Review Conference in May 2017, and all of them reflect ongoing discussions on the subject across and beyond the Asian and Pacific regions.
Graeme Laurie’s contribution to this issue aptly captures a central concern in biobanking initiatives, activities and deliberations: how should we govern biobanks that are rapidly taking on a more global and diversified character, respecting not only biological materials but also increasingly complex data and analytics? Drawing on his experience as the Chair of the UK Biobank Ethics and Governance Council from 2006 to 2010, he insightfully argues for governance regimes to be advanced based on an ‘Ethics+’ approach. By this approach, the art of governing and governmentality itself should be grounded in the core values and principles already articulated in different sources and for a variety of contexts. Some of these values, principles, sources and contexts are taken up in evaluation by other contributors to this journal issue.
The importance of thinking deeply about the nature and implications of globalisation is highlighted by Lisa Dive et al. As they explain, the China Kadoorie Biobank and similar repositories are no longer simply discrete and institution bound collections of materials, but are simultaneously nodules within interlocking networks dispersed across a number of jurisdictional spaces. Conceivably, such a phenomenon renders challenging stakeholder engagement and related initiatives that are so crucial to secure legitimacy and trust. Here, Keymanthri Moodley provides instructive insights into a number of developments in Africa that are directed at enabling stakeholder engagement in a transnational space, notably the H3 Africa project. However, local spaces still matter. Within South Africa, impressive tools like educational pamphlets and videos have been produced and deployed to engage research participants and members of community advisory boards in discussions around biobanking. Stakeholder engagement is also important for capacity building. Within Asia, Chih-Hsing Ho provides a similarly insightful account on the implementation of a legislative requirement for group consultation where aborigines in Taiwan are involved in biobanking and genetic research. Perhaps more important for bioethicists is the implicit call to introspection as to the scope and limits of individualism that is deeply embedded in the raison d’être of informed consent-taking as conventionally understood. This call is supported by findings from a 10-year retrospective analysis of consent documentation collated by a major academic healthcare institution in Singapore. In this contribution, Tuck-Wai Chan and Calvin Ho argue that trust and trustworthiness constitute an unfinished project even though crucial regulatory changes have been introduced since 2015 to invigorate consent-taking for tissue donation.
If you, fair reader, should at this point consider that nothing new is being said about informed consent or governance, you are probably right—but only partially. At a general level, the importance of informed consent in biobanking is well recognised, as are its limitations. Likewise, the necessity of governance that engenders legitimacy and trust requires little or no explanation. However, the contributions in this journal issue make clear that where the context is itself in flux, we should not take for granted that it is always clear what informed consent means. The contribution by Yonghui Ma et al. clearly illustrates how our understanding of faeces as excrement has been fundamentally reshaped by a deepening knowledge of how we as human beings relate to microbiota. While regulation could help to craft a discursive space within which risks and benefits may be configured for the purposes of enabling informed consent and by extension, individual choice, it could be at the same time unduly burdensome on the common good. Or worse, social imagination of better futures could be foreclosed by short-sighted desire for political and perhaps even moral certitude. In a different context, a similar message is eloquently presented by Terry Kaan. The common law rule of ‘no-property’ in the human body (or any part thereof) may have been sensible some 136 years ago; it is less clear today why the ethical and social implications of this rule should prevail over other competing and perhaps just as legitimate principles. While statutory modifications to this common law rule have been introduced in many common law jurisdictions, a similar move has not been made in Hong Kong. This inertia has in turn contributed to moral and social distress in at least two incidents discussed in his contribution. To be sure, concerns over essentialism and reductionism are not confined to legal epistemology. Joseph Tham et al. present the problem of narrow and perhaps even blinkered ‘ethical’ commitments on the part of institutions and decision-makers, which they term ethical ‘blind spots’. Instructively, we are encouraged to consider how checks on these ‘blind spots’ through experience, self-knowledge, objectivity, and foresight could be scaled up from an individual to an institutional level.
Yet a constitutional tradition or convention, where it applies, is hardly ever monolithic. Processually, law should at least be directed at advancing a plurality of constitutional values for the common good. In the context of healthcare, this point is clearly communicated in a number of judicial pronouncements in India. But where biomedical research is concerned, it is less clear what has been or should be prioritised. Athira Kumari’s contribution highlights a regulatory deficiency in India where the guidelines on biomedical research fail to speak to broader social and constitutional commitments. Practically, this has the effect of de-prioritising public interests, which is ironic since the value of biomedical research is often attributed to maximising the common good. Unless the regulatory position is clarified and strengthened, ethical concerns are likely to grow with the emergence of for-profit biobanks, for instance. Drawing even closer to Graeme Laurie’s proposed approach is the contribution by Hannah Kim et al., where they argue that bioethical principles should be entrenched as constitutional principles. While bioethical principles are already encapsulated within a legislative framework in the Republic of Korea, such a framework is not sufficiently responsive to ethical and regulatory concerns that have arisen from rapid technological advancements. For this reason, the legislation has been amended on multiple occasions since it was first enacted. Even now, this regulatory framework is unlikely to adequately govern Korean biobanks whose roles are being redefined by the new paradigm of precision medicine.
While technological progress continues to push and redefine contextual boundaries, a number of concerns have been intransigent. Inequities associated with resource constraints and systemic deficiencies continue to weigh heavily on biobanking activities and deliberations. The contribution by Phaik Yeong Cheah et al. illustrates some of these challenges in relation to a global-local data sharing partnership that has taken root in Thailand. The research agenda that has been mapped out is itself fertile ground to consider the continuing relevance of local spaces in global biomedical research agenda. Elsewhere, those who argue for the Ebola database constituted after the Ebola epidemic in West Africa between 2014 and 2016 to be localised within Africa suggest that there is an inseparable link between ‘local’ control and legitimacy (Conton 2017). An initiative by the World Health Organization to develop a blueprint material transfer agreement (MTA) web-based tool appears to be an attempt to sustain some form of ‘local’ control. Its prime objective has been stated as empowering outbreak-affected countries to manage appropriate ownership of samples while ensuring that the full public health potential of valuable biological material is realised (World Health Organization 2016). It is difficult to say if such a tool could operate effectively in the absence of a global governance framework. Claire Lajaunie and Calvin Ho (2017) have argued for the need to build on the framework relating to access and benefit sharing established under the Convention on Biodiversity and the Nagoya Protocol, but their relevance to a public health context and governance implications have yet to be fully thought through.
We take this opportunity to thank all our contributors and readers, particularly Kanny Ooi whose correspondence is published in this journal issue in response to a perspective by Dr. Chi Chiu Tan (2017) on recent changes to the professional ethical code of conduct of the Singapore Medical Council for registered medical practitioners. As she has observed, a critical issue that will perhaps warrant further attention is whether doctors should have the right to treat themselves or those close to them. We also wish one and all happy holidays and a fruitful new year ahead!
About this article
Cite this article
Ho, C.WL., Caals, K. Editorial.
ABR 9, 277–280 (2017). https://doi.org/10.1007/s41649-017-0041-9