The expression “common good” usually conjures up benevolent associations: it is something to be desired, a worthy goal, and it would be a brave person who declared he or she was against the common good. Yet modern times have taught us to be critical and even suspicious of such grand rhetoric, leading us to query what lies behind this ambitious notion, who formulates what it stands for, and how such formulations have been reached.

There is growing interest for a communitarian approach to the governance of genomics, and for such governance to be grounded in principles of justice, equity and solidarity. However, there is a near absence of conceptual studies on how communitarian-based principles, or values, may inform, support or guide the governance of genomics research. Given that solidarity is a key principle in Ubuntu, an African communitarian ethic and theory of justice, there is emerging interest about the extent to which Ubuntu could offer (...) guidance for the governance of genomics research in Africa. To this effect, we undertook a conceptual analysis of Ubuntu with the goal of identifying principles that could inform equity-oriented governance of genomics research. Solidarity, reciprocity, open sharing, accountability, mutual trust, deliberative decision-making and inclusivity were identified as core principles that speak directly to the different macro-level ethical issues in genomics research in Africa such as: the exploitation of study populations and African researchers, equitable access and use of genomics data, benefit sharing, the possibility of genomics to widen global health inequities and the fair distribution of resources such as intellectual property and patents. We use the identified the principles to develop ethical guidance for genomics governance in Africa. (shrink)

Recent advances in our understanding of the human genome have raised high hopes for the creation of personalized medicine able to predict diseases well before they occur, or that will lead to individualized and therefore more effective treatments. This possibility of a more accurate science of the prevention and surveillance of disease also illuminates the field of public health, where the translation of genomic knowledge could provide tools enhancing the capacity of public health authorities to promote health and prevent diseases. (...) But beyond scientific considerations, the use of genomics in public health research and interventions gives rise to several ethical and social issues of great importance. Considering the impact that PHG could have on the future of public health while still paying attention to the uncertainty surrounding the use of genomic databases for the benefit of populations, this article seeks to explore the promise of genomics in public health and the ethical issues that emerge from its application. (shrink)

Synthetic biology, as an engineering approach to biological systems, has the potential to disruptively innovate the development of vaccines, therapeutics, and diagnostics. Data accessibility and differences in data-usage capabilities are important factors in shaping this innovation landscape. In this paper, the data that underpin synthetic biology responses to the COVID-19 pandemic are analyzed as positional information goods—goods whose value depends on exclusivity. The positionality of biological data impacts the ability to guide innovations toward societally preferred goals. From both an ethical (...) and economic point of view, positionality can lead to suboptimal as well as beneficial situations. When aiming for responsible innovation (i.e. embedding societal deliberation in the innovation process), it is important to consider hurdles and facilitators in data access and use. Central governance and knowledge commons provide routes to mitigate the negative effects of data positionality. (shrink)

Although it is now generally acknowledged that new biomedical technologies often produce new definitions and sometimes even new concepts of disease, this observation is rarely used in research that anticipates potential ethical issues in emerging technologies. This article argues that it is useful to start with an analysis of implied concepts of disease when anticipating ethical issues of biomedical technologies. It shows, moreover, that it is possible to do so at an early stage, i.e. when a technology is only just (...) emerging. The specific case analysed here is that of ‘molecular medicine’. This group of emerging technologies combines a ‘cascade model’ of disease processes with a ‘personal pattern’ model of bodily functioning. Whereas the ethical implications of the first are partly familiar from earlier—albeit controversial—forms of preventive and predictive medicine, those of the second are quite novel and potentially far-reaching. (shrink)

Genebanking, the process of preserving genetic resources, is a central practice in the modern management of crop genetics, especially for the species used for food and agriculture. Closely interrelated networks of local, national and global actors are responsible for ex situ conservation. They all seek to make plant genetic resources accessible for all and now face new challenges arising from digitisation. Plant sciences are entering the postgenomic era, moving fast from initially providing a single reference genome for each species (genomics), (...) to harnessing the extent of diversity within crop species (pangenomics) and among their relatives (referred to as postgenomics). This paper describes the extent to which ex situ collections have already undergone a digital shift, or are planning to do so, and the potential impact of this postgenomic-induced dematerialisation on the global governance of plant genetic resources. In turn, digitising material (seed) collection changes the relationship between genebanks and genomic databases. Comprehensive genomic characterisation of genebank accessions is ongoing, and I argue here that these efforts may provide a unique opportunity for genebanks to further embrace the moral, ethical and ultimately political principles on which they were built. Repurposing genebanks as decentralised digital biocentres could help relocate capabilities and stewardship over genetic resources. Empowering local farmers by providing access, promoting the use and unlocking benefits from state-of-the-art tools of modern plant breeding may allow bridging the breeding divide. However, to accomplish such a paradigm shift, genebanks require a strong political mandate that must primarily originate from the access and benefit-sharing framework. Only so may the global challenges associated with the loss of biodiversity and food insecurity be addressed. (shrink)

The term “globalization” was popularized by Marshall McLuhan in War and Peace in the Global Village. In the book, McLuhan described how the global media shaped current events surrounding the Vietnam War [1] and also predicted how modern information and communication technologies would accelerate world progress through trade and knowledge development. Globalization now refers to a broad range of issues regarding the movement of goods and services through trade liberalization, and the movement of people through migration. Much has also been (...) written on the global effects of environmental degradation, population growth, and economic disparities. In addition, the pace of scientific development has accelerated, with both negative and positive implications for global health. Concerns for national health transcend borders, with a need for shared human security and an enhanced role for international cooperation and development [2]. These issues have significant bioethical implications, and thus a renewed academic focus on the ethical dimensions of public health is needed. Future developments in science and health policy also require a firm grounding in bioethical principles. These core principles include beneficence; nonmaleficence ; respect for persons and human dignity ; and attention to equity and social justice. According to the World Health Organization [3], global ethical approaches should monitor and update ethical norms for research, as necessary; anticipate ethical implications of advances in science and technology for health; apply internationally accepted codes of ethics; ensure that agreed standards guide future work on the human genome; and ensure that quality in health systems and services is assessed and promoted. (shrink)