This open access book offers insights into the development of the ground-breaking Global Code of Conduct for Research in Resource-Poor Settings (GCC) and the San Code of Research Ethics. Using a new, intuitive moral framework predicated on fairness, respect, care and honesty, both codes target ethics dumping – the export of unethical research practices from a high-income setting to a lower- or middle-income setting. The book is a rich resource of information and argument for any research stakeholder who opposes double (...) standards in research. It will be indispensable for applicants to European Union framework programmes, as the GCC is now a mandatory reference document for EU funding. (shrink)

This open access book provides original, up-to-date case studies of “ethics dumping” that were largely facilitated by loopholes in the ethics governance of low and middle-income countries. It is instructive even to experienced researchers since it provides a voice to vulnerable populations from the fore mentioned countries. Ensuring the ethical conduct of North-South collaborations in research is a process fraught with difficulties. The background conditions under which such collaborations take place include extreme differentials in available income and power, as well (...) as a past history of colonialism, while differences in culture can add a new layer of complications. In this context, up-to-date case studies of unethical conduct are essential for research ethics training. (shrink)

Responsible research and innovation (RRI) is a governance framework promoted by influential policy makers such as the European Commission and academics from the fields of science and technology studies and management. This book is the first text to serve industry. Inspired by existing Corporate Responsibility standards and principles, it offers a selection of tools that can assist practitioners in implementing RRI in business and industry. -/- Responsible Research and Innovation (RRI) is integrative. It is a convergence of Technology Assessment (TA) (...) and Ethics, including corporate responsibility. The task of linking RRI to existing frameworks has only just begun. This book is a welcome example, showing how Corporate Responsibility tools can drive the implementation of RRI. Prof. Armin Grunwald, Head of the Office of Technology Assessment at the German Bundestag and Head of the Institute for Technology Assessment and Systems Analysis, Karlsruhe Institute of Technology, Germany. -/- This is a simple, short, yet encyclopaedic work designed to help business implement RRI using the many tools of Corporate Responsibility (CR) already in place, everything from ISO9001 to the Ceres Roadmap for Sustainability. It makes clear the ways in which RRI is an extension of ideas already well-developed in CR. I learned a lot reading it. Prof. Michael Davis, Senior Fellow, Center for the Study of Ethics in the Professions, Illinois Institute of Technology, USA. (shrink)

Imagine you are walking down a city street. It is windy and raining. Amidst the bustle you see a young woman. She sits under a railway bridge, hardly protected from the rain and holds a woolen hat containing a small number of coins. You can see that she trembles from the cold. Or imagine seeing an old woman walking in the street at dusk, clutching her bag with one hand and a walking stick with the other. A group of male (...) youths walk behind her without overtaking, drunk and in the mood for mischief. It doesn't need an academic to say what vulnerability is. We can all see it, much more often than we care to. (shrink)

edited by Tuija Takala and Matti Häyry, welcomes contributions on the conceptual and theoretical dimensions of bioethics.

Why should all human beings have certain rights simply by virtue of being human? One justification is an appeal to religious authority. However, in increasingly secular societies this approach has its limits. An alternative answer is that human rights are justified through human dignity. This paper argues that human rights and human dignity are better separated for three reasons. First, the justification paradox: the concept of human dignity does not solve the justification problem for human rights but rather aggravates it (...) in secular societies. Second, the Kantian cul-de-sac: if human rights were based on Kant’s concept of dignity rather than theist grounds, such rights would lose their universal validity. Third, hazard by association: human dignity is nowadays more controversial than the concept of human rights, especially given unresolved tensions between aspirational dignity and inviolable dignity. In conclusion, proponents of universal human rights will fare better with alternative frameworks to justify human rights rather than relying on the concept of dignity. (shrink)

Codes of ethics and conduct typically demand the highest standard of ethical behaviour from every single employee. This implies a democratic or lobbyist understanding of ethics in business. The contrasting view would argue that business ethics is an elitist undertaking that can only be instigated from the top, by managing directors or owner managers. This article looks at three types of ethical businesses, three types of approaches to ethical problem‐solving, and three possible incentives for ethical business to see which of (...) the above is more convincing. It will be argued that the impulse for value‐driven business has to come from the top. Only top management and owner managers have the opportunity to foster major change in business practice. (shrink)

Why should all human beings have certain rights simply by virtue of being human? One justification is an appeal to religious authority. However, in increasingly secular societies this approach has its limits. An alternative answer is that human rights are justified through human dignity. This paper argues that human rights and human dignity are better separated for three reasons. First, the justification paradox: the concept of human dignity does not solve the justification problem for human rights but rather aggravates it (...) in secular societies. Second, the Kantian cul-de-sac: if human rights were based on Kant's concept of dignity rather than theist grounds, such rights would lose their universal validity. Third, hazard by association: human dignity is nowadays more controversial than the concept of human rights, especially given unresolved tensions between aspirational dignity and inviolable dignity. In conclusion, proponents of universal human rights will fare better with alternative frameworks to justify human rights rather than relying on the concept of dignity. (shrink)

Ethics dumping is the practice of undertaking research in a low- or middle-income setting which would not be permitted, or would be severely restricted, in a high-income setting. Whilst Kenya operates a sophisticated research governance system, resource constraints and the relatively low number of accredited research ethics committees limit the capacity for ensuring ethical compliance. As a result, Kenya has been experiencing cases of ethics dumping. This article presents 11 challenges in the context of preventing ethics dumping in Kenya, namely (...) variations in governance standards, resistance to double ethics review, resource constraints, unresolved issues in the management of biological samples, unresolved issues in the management of primary data, unsuitable informed consent procedures, cultural insensitivity, differing standards of care, reluctance to provide feedback to research communities, power differentials which facilitate the exploitation of local researchers and lack of local relevance and/or affordability of the resultant products. A reflective approach for researchers, built around the values of fairness, respect, care and honesty, is presented as a means of taking shared responsibility for preventing ethics dumping. (shrink)

Benefit sharing has been a recurrent theme in international debates for the past two decades. However, despite its prominence in law, medical ethics and political philosophy, the concept has never been satisfactorily defined. In this conceptual paper, a definition that combines current legal guidelines with input from ethics debates is developed. Philosophers like boxes; protective casings into which they can put concisely-defined concepts. Autonomy is the human capacity for self-determination; beneficence denotes the virtue of good deeds, coercion is the intentional (...) threat of harm and so on. What about benefit sharing? Does the concept have a box and are the contents clearly defined? The answer to this question has to be no. The concept of benefit sharing is almost unique in that various disciplines use it regularly without precise definitions. In this article, a definition for benefit sharing is provided, to eliminate unnecessary ambiguity. (shrink)

In 2006, the Indonesian government decided to withhold avian flu samples from the World Health Organization. They argued that even though Indonesian samples were crucial to the development of vaccines, the results of vaccine research would be unaffordable for its citizens. Commentaries on the case varied from alleging blackmail to welcoming this strong stance against alleged exploitation. What is clear is that the concern expressed is related to benefit sharing.Benefit sharing requires resource users to return benefits to resource providers in (...) order to achieve justice. One benefit sharing tool within health research is the duty to provide a health care intervention which has been proven to be beneficial (or alternative benefits) to research participants after a study has been concluded. This duty is generally known as a post-study obligation. It was enshrined in the Declaration of Helsinki in 2000 and re-emphasized in 2008. Yet, there are few, if any, examples of good practice.In this article, we analyse the obstacles to giving more bite to benefit sharing provisions in health research through ethical review. We conclude that the provision of post-study access to healthcare interventions is not a promising mechanism when monitored through research ethics committees. Alternative benefit provision is preferable if one focuses on achieving compliance. However, even the latter faces challenges, which we address in specific recommendations. (shrink)

The Ebola epidemic that broke out inWest Africa West AfricaAfrica towards the end of 2013 had been brought under reasonable control by 2015. The epidemic had severely affected three countries. This case study is about a phase I/II clinical trial Phase I/II clinical trial of a candidate Ebola virus vaccine in 2015 in a sub-Saharan AfricanSub-Saharan Africa country which had not registered any cases of the Ebola virus disease. The study was designed as a randomized double-blinded trialRandomized double blinded trial. (...) It was sponsored and funded by one of the biggest Northern multinational pharmaceutical companiesPharmaceutical companies. The protocol received ethics clearance from the relevantNational Ethics Committee national ethics committeeEthics committee. The study was coordinated and managed at the local branch of a big Northern diagnostic laboratoryDiagnostic laboratory and a laboratory of a local regional hospital. The overall study was a multi-countryMulti-country, multi-siteMulti-site trial aimed at recruiting a total of 3,000 research participantsResearch participants across four or five sub-Saharan African countries. For this country, the recruitmentRecruitment sites were two big cities, each aiming to recruit 200 participants: adults at the first site and childrenChildren at the second. The target sampleSample size was almost achieved at the first site but, before the study commenced at the second site, some members of raised the alarm that the governmentGovernment was carelessly risking the health, safetySafety and lives of citizens in the cause of an unproven vaccine that could precipitate a public health disaster. The trial was immediately suspended. A commentary on this case, and on the importance of trustTrust, is provided by Katharine Browne and Doris Schroeder at the end of this chapter. It highlights differences between this case and a phase I Ebola vaccine trial in CanadaCanada in 2014. (shrink)

Benefit sharing has been a recurrent theme in international debates for the past two decades. However, despite its prominence in law, medical ethics and political philosophy, the concept has never been satisfactorily defined. In this conceptual paper, a definition that combines current legal guidelines with input from ethics debates is developed. Philosophers like boxes; protective casings into which they can put concisely-defined concepts. Autonomy is the human capacity for self-determination; beneficence denotes the virtue of good deeds, coercion is the intentional (...) threat of harm and so on. What about benefit sharing? Does the concept have a box and are the contents clearly defined? The answer to this question has to be no. The concept of benefit sharing is almost unique in that various disciplines use it regularly without precise definitions. In this article, a definition for benefit sharing is provided, to eliminate unnecessary ambiguity. (shrink)

Benefit sharing aims to achieve an equitable exchange between the granting of access to a genetic resource and the provision of compensation. The Convention on Biological Diversity, adopted at the 1992 Earth Summit in Rio de Janeiro, is the only international legal instrument setting out obligations for sharing the benefits derived from the use of biodiversity. The CBD excludes human genetic resources from its scope, however, this article considers whether it should be expanded to include those resources, so as to (...) enable research subjects to claim a share of the benefits to be negotiated on a case-by-case basis. Our conclusion on this question is: 'No, the CBD should not be expanded to include human genetic resources.' There are essential differences between human and non-human genetic resources, and, in the context of research on humans, an essentially fair exchange model is already available between the health care industry and research subjects. Those who contribute to research should receive benefits in the form of accessible new health care products and services, suitable for local health needs and linked to economic prosperity. When this exchange model does not apply, as is often the case in developing countries, individually negotiated benefit sharing agreements between researchers and research subjects should not be used as 'window dressing'. Instead, national governments should focus their finances on the best economic investment they could make; the investment in population health and health research as outlined by the World Health Organization's Commission on Macroeconomics and Health; whilst international barriers to such spending need to be removed. (shrink)

In 2006, the Indonesian government decided to withhold avian flu samples from the World Health Organization. They argued that even though Indonesian samples were crucial to the development of vaccines, the results of vaccine research would be unaffordable for its citizens. Commentaries on the case varied from alleging blackmail to welcoming this strong stance against alleged exploitation. What is clear is that the concern expressed is related to benefit sharing. Benefit sharing requires resource users to return benefits to resource providers (...) in order to achieve justice. One benefit sharing tool within health research is the duty to provide a health care intervention which has been proven to be beneficial (or alternative benefits) to research participants after a study has been concluded. This duty is generally known as a post-study obligation. It was enshrined in the Declaration of Helsinki in 2000 and re-emphasized in 2008. Yet, there are few, if any, examples of good practice. In this article, we analyse the obstacles to giving more bite to benefit sharing provisions in health research through ethical review. We conclude that the provision of post-study access to healthcare interventions is not a promising mechanism when monitored through research ethics committees. Alternative benefit provision is preferable if one focuses on achieving compliance. However, even the latter faces challenges, which we address in specific recommendations. (shrink)

Achieving equity in international research is a pressing concern. Exploitation in any scenario, whether of human research participants, institutions, local communities, animals or the environment, raises the overarching question of how to avoid such exploitation. Agreed principles can be universally applied to research in any discipline or geographical area, whatever methodologies are employed. This chapter introduces a collection of case studies, presenting a range of up-to-date examples of exploitation in North-South research collaborations, in order to raise awareness of ethics dumping.

This book offers a unique and insightful analysis of Western and Middle Eastern concepts of dignity and illustrates them with examples of everyday life. Dignity in the 21st Century - Middle East and West is unique and insightful for a range of reasons. First, the book is co-authored by scholars from two different cultures (Middle East and West). As a result, the interpretations of dignity covered are broader than those in most Western publications. Second, the ambition of the book is (...) to use examples from everyday life and fiction to debate a range of dignity interpretations supplemented by philosophical and theological theories. Thus, the book is designed to be accessible to a general readership, which is further facilitated because it is published with full open access. Third, the book does not defend one superior theory of dignity, but instead presents six Western approaches and one based on the Koran and then asks whether a common essence can be detected. -/- The answer to the question whether a common essence can be detected between the Koranic interpretation of dignity and the main Western theories (virtue, Kant) is YES. The essence can be seen in dignity as a sense of self-worth, which persons have a duty to develop and respect in themselves and a duty to protect in others. The book ends with two recommendations. First, given the 7 concepts of dignity introduced in the book, meaningful dialogue can only be achieved if conversation partners clarify which variation they are using. Second, future collaborations between philosophers and psychologists might be helpful in moving theoretical knowledge on dignity as a sense of self-worth into practical action. The “scourges” of a sense of self-worth and dignity are identified by psychologists as violence, humiliation, disregard and embarrassment. To know more about how these can be avoided from psychologists, is helpful when protecting a sense of self-worth in others. (shrink)

This paper explores the usefulness of the 'ethical matrix', proposed by Ben Mepham, as a tool in technology assessment, specifically in food ethics. We consider what the matrix is, how it might be useful as a tool in ethical decision-making, and what drawbacks might be associated with it. We suggest that it is helpful for fact-finding in ethical debates relating to food ethics; but that it is much less helpful in terms of weighing the different ethical problems that it uncovers. (...) Despite this drawback, we maintain that, with some modifications, the ethical matrix can be a useful tool in debates in food ethics. We argue that useful modifications might be to include future generations amongst the stakeholders in the matrix, and to substitute the principle of solidarity for the principle of justice. (shrink)

Ethics dumping is a global phenomenon involving the ‘off-shoring’of research. Research that would be prohibited, severely restrictedor regarded as highly patronizing in high-income regions is instead conducted inresource-poor settings. Twenty-eight case studies of ethics dumping were examined through inductive thematic analysis to reveal predisposing factors from the perspective of researchers from high-income regions. Six categories were agreed and further illuminated: Patronizing conduct, unfair distribution of benefits and/or burdens, culturally inappropriate conduct, double standards, lack of due diligence and lack of transparency. (...) The ultimate aim of the paper is to deepen understanding of thesehighly unethical practicesamongst academics who stand against poverty, leading to theirfurther reduction. (shrink)

ABSTRACT Benefit sharing aims to achieve an equitable exchange between the granting of access to a genetic resource and the provision of compensation. The Convention on Biological Diversity (CBD), adopted at the 1992 Earth Summit in Rio de Janeiro, is the only international legal instrument setting out obligations for sharing the benefits derived from the use of biodiversity. The CBD excludes human genetic resources from its scope, however, this article considers whether it should be expanded to include those resources, so (...) as to enable research subjects to claim a share of the benefits to be negotiated on a case‐by‐case basis. Our conclusion on this question is: ‘No, the CBD should not be expanded to include human genetic resources.’ There are essential differences between human and non‐human genetic resources, and, in the context of research on humans, an essentially fair exchange model is already available between the health care industry and research subjects. Those who contribute to research should receive benefits in the form of accessible new health care products and services, suitable for local health needs and linked to economic prosperity (e.g. jobs). When this exchange model does not apply, as is often the case in developing countries, individually negotiated benefit sharing agreements between researchers and research subjects should not be used as ‘window dressing’. Instead, national governments should focus their finances on the best economic investment they could make; the investment in population health and health research as outlined by the World Health Organization’s Commission on Macroeconomics and Health; whilst international barriers to such spending need to be removed. (shrink)

The highest attainable standard of health is a fundamental human right, which has been part of international law since 1948. States and their institutions are the primary duty bearers responsible for ensuring that human rights are respected, protected, and fulfilled. However, more recently it has been argued that pharmaceutical companies have a coresponsibility to fulfill the human right to health. Most prominently, this coresponsibility has been expressed in the United Nations Millennium Goal 8 Target 4. “In cooperation with pharmaceutical companies, (...) provide access to affordable essential drugs in developing countries.”. (shrink)

Abstract Benefit sharing as envisaged by the 1992 Convention on Biological Diversity (CBD) is a relatively new idea in international law. Within the context of non-human biological resources, it aims to guarantee the conservation of biodiversity and its sustainable use by ensuring that its custodians are adequately rewarded for its preservation. Prior to the adoption of the CBD, access to biological resources was frequently regarded as a free-for-all. Bioprospectors were able to take resources out of their natural habitat and develop (...) commercial products without sharing benefits with states or local communities. This paper asks how CBD-style benefit-sharing fits into debates of justice. It is argued that the CBD is an example of a set of social rules designed to increase social utility. It is also argued that a common heritage of humankind principle with inbuilt benefit-sharing mechanisms would be preferable to assigning bureaucratic property rights to non-human biological resources. However, as long as the international economic order is characterized by serious distributive injustices, as reflected in the enormous poverty-related death toll in developing countries, any morally acceptable means toward redressing the balance in favor of the disadvantaged has to be welcomed. By legislating for a system of justice-in-exchange covering nonhuman biological resources in preference to a free-for-all situation, the CBD provides a small step forward in redressing the distributive justice balance. It therefore presents just legislation sensitive to the international relations context in the 21st century. (shrink)

Responsible innovation is an approach to business that can both incur and save costs. Some company leaders are concerned that it is yet another administrative and financial burden on their commercial operations. Others can see its financial advantages, e.g. avoiding the development of products the market will not accept, or reducing costs through sustainability measures. Building on the corporate responsibility and management advice literature, this chapter indicates a number of areas where RI can create a competitive advantage for SMEs. Real (...) life case studies provide examples of reduced costs, reputational gains, employee retention, faster market entry, access to previously unavailable stakeholders, higher acceptability of end products, and higher innovation potential through diverse employees. Success cannot be guaranteed, but the willingness of an SME to innovate in areas that have positive societal impact in addition to profits can bring business benefits. (shrink)

The 1992 Convention on Biological Diversity (CBD) and its 2010 Nagoya Protocol brought about a breakthrough in global policy making. They combined a concern for the environment with a commitment to resolving longstanding human injustices regarding access to, and use of biological resources. In particular, the traditional knowledge of indigenous communities was no longer going to be exploited without fair benefit sharing. Yet, for 25 years after the adoption of the CBD, there were no major benefit sharing agreements that led (...) to significant funding streams for indigenous communities. This changed with the signing of the Rooibos Benefit Sharing Agreement in South Africa, described in this paper. As the authors report, the Rooibos Agreement is a superlative in two respects. It is the biggest benefit sharing agreement between industry and indigenous peoples to date. It is also the first industry-wide agreement to be formed in accordance with biodiversity legislation. This article is a co-production between traditional knowledge holders, the lawyer who represented their interests, the Co-Chair of the Nagoya Protocol negotiations, and an ethicist who analyzed the major challenges of this historic agreement. With no precedent in the benefit sharing world, the agreement stands as a concrete example of the ‘art of the possible.’ Although the rooibos case is unique in a number of aspects, the experience offers many transferable insights, including: patience; incrementalism; honesty; trust; genuine dialogue; strong legal support; a shared recognition that a fair, win-win deal is possible; government leadership; and unity amongst indigenous peoples. Such ingredients of success can apply well beyond southern Africa. (shrink)

Indigenous Peoples, Consent and Benefit Sharing is the first in-depth account of the Hoodia bioprospecting case and use of San traditional knowledge, placing it in the global context of indigenous peoples’ rights, consent and benefit-sharing. It is unique as the first interdisciplinary analysis of consent and benefit sharing in which philosophers apply their minds to questions of justice in the Convention on Biological Diversity (CBD), lawyers interrogate the use of intellectual property rights to protect traditional knowledge, environmental scientists analyse implications (...) for national policies, anthropologists grapple with the commodification of knowledge and, uniquely, case experts from Asia, Australia and North America bring their collective expertise and experiences to bear on the San-Hoodia case. -/- While much of the focus is on bioprospecting and natural product development, Indigenous Peoples, Consent and Benefit-Sharing also draws important lessons about informed consent and benefit-sharing from the health sciences and sectors such as mining. Policymakers around the world are under significant pressure to resolve the challenges of implementing the CBD. This book’s analysis and recommendations will help them. -/- ‘It is good to see philosophers engaging with the UN Convention on Biological Diversity, and doing so by looking in depth at a real situation in which it has been invoked.’ Peter Singer, Ira W. DeCamp Professor of Bioethics in the University Center for Human Values, Princeton University . (shrink)

This article considers how we should frame the ethical issues raised by current proposals for large-scale genebanks with on-going links to medical and lifestyle data, such as the Wellcome Trust and Medical Research Council's 'UK Biobank'. As recent scandals such as Alder Hey have emphasised, there are complex issues concerning the informed consent of donors that need to be carefully considered. However, we believe that a preoccupation with informed consent obscures important questions about the purposes to which such collections are (...) put, not least that they may be only haphazardly used for research —an end that would not fairly reflect the original altruistic motivation of donors, and the trust they must invest. We therefore argue that custodians of such databases take on a weighty pro-active duty, to encourage public debate about the ends of such collections and to sponsor research that reflects publicly agreed priorities and provides public benefits. (shrink)

Dying before one’s time has been a prominent theme in classic literature and poetry. Catherine Linton’s youthful death in Wuthering Heights leaves behind a bereft Heathcliff and generations of mourning readers. The author herself, Emily Brontë, died young from tuberculosis. John Keats’ Ode on Melancholy captures the transitory beauty of 19th century human lives too often ravished by early death. Keats also died of tuberculosis, aged 25. “The bloom, whose petals nipped before they blew, died on the promise of the (...) fruit” is how Percy Bysshe Shelley expressed his grief over Keats’ death. Emily Dickinson wrote So Has a Daisy Vanished, being driven into depression by the early loss of loved ones from typhoid and tuberculosis. (shrink)

In its essence, post-trial obligations describe a duty by research sponsors to provide a successfully tested drug to research participants who took part in the relevant clinical trials after the trial has been concluded. In some instances,this duty is extended beyond the research participants. This article is divided into three main parts. The first part outlines the legal basis for post-trial obligations by looking at international guidelines, including those issued by the World Medical Association. National legislation is exemplified through resolutions (...) and guidelines issued by Brazil and South Africa respectively. The second part analyses the ethical foundation for post-trial obligations, in particular the attempt to minimize exploitation of research subjects. The third part raises obstacles and challenges for the implementation of post-trial obligations. The jury is still out on whether post-trial obligations in the form of access to drugs for clinical trial participants is the best, or even a good way, to avoid exploitation in medical research. (shrink)

Achieving equity in international research is one of the pressing concerns of the twenty-first century. In this era of progressive globalization, there are many opportunities for the deliberate or accidental export of unethical research practices from high-income regions to low- and middle-income countries and emerging economies. The export of unethical practices, termed “ethics dumping,” may occur through all forms of research and can affect individuals, communities, countries, animals, and the environment. Ethics dumping may be the result of purposeful exploitation but (...) often arises from lack of awareness of good ethical and governance practice. This chapter describes the work of the TRUST project toward counteracting the practice of ethics dumping through the development of tools for the improvement of research governance structures. Multi-stakeholder consultation informs all of TRUST’s developments. Most importantly, this gives voice to marginalized vulnerable groups and indigenous people, who have been equal and active partners throughout the project. At the heart of the TRUST project is an ambitious aim to develop a Global Code of Conduct for Research in Resource-Poor Settings. Uniquely, the Code provides guidance across all research disciplines in clear, short statements, focusing on research collaborations that entail considerable imbalances of power, resources and knowledge and using a new framework based on the values of fairness, respect, care, and honesty. The code was recently adopted by the European Commission as a reference document for Horizon 2020 and Horizon Europe. (shrink)

Global bioethics is a bold project. In its moderate form, it aims to find solutions to the dilemmas posed by modern medicine and the biological sciences through intercultural understanding of human obligations and opportunities. In its more ambitious form, it endeavors to cover all possible ethical problems arising with regard to life and living things on earth. Given the ambitiousness of even the moderate aim, it is unsurprising that disputes are frequent and agreements are scarce. One of the most contentious (...) issues is whether human rights should play an important role in global bioethics or not. a. (shrink)

On September 28, 2002, 11-year-old Jakob von Metzler, a banker's son, was abducted on the way to his parents' house in Frankfurt. A sum of one million Euro was demanded for his release. Three days after Jakob's disappearance, Magnus Gäfgen, a 32-year-old law student, collected the ransom from the arranged tram stop in Frankfurt during the night. While under observation by the police, he ordered a new Mercedes and booked a holiday abroad. Seventy-six hours after Jakob's disappearance, the police arrested (...) Gäfgen and his 16-year-old girlfriend while simultaneously searching his flat. There they found the missing ransom, but no sign of Jakob. a b. (shrink)

Research cannot be done by researchers alone. In most cases, additional resources are required, including human research participants, access to biodiversity for biological and genetic resources, or traditional knowledge. Benefit sharing has been part of global conventions and international ethics guidelines for over 25 years, predicated on the understanding that those who contribute to the research process and its outcomes should share in the benefits as a matter of fairness. This chapter explores the different understandings of benefit sharing in a (...) historical context, from the “Grand Bargain” of the Convention on Biological Diversity in 1992 to the Global Code of Conduct for Research in Resource-Poor Settings in 2018, and examines the contemporary potential for the UN Sustainable Development Goals (Agenda 2030) to facilitate benefit sharing. The discussion provides guidance to researchers, through examples and short case studies, on how to discharge the obligations of benefit sharing effectively and fairly, in pursuit of research integrity. (shrink)

Policy makers from around the world are trying to emulate successful innovation systems in order to support economic growth. At the same time, innovation governance systems are being put in place to ensure a better integration of stakeholder views into the research and development process. In Europe, one of the most prominent and newly emerging governance frameworks is called Responsible Research and Innovation. This article aims to substantiate the following points: The concept of RRI and the concept of justice can (...) be used to derive similar ethical positions on the nano-divide. Given the ambitious policy aims of RRI, the concept may be better suited to push for ethical outcomes on access to nanotechnology and its products rather than debates based on justice issues alone. It may thus serve as a mediator concept between those who push solely for competitiveness considerations and those who push solely for justice considerations in nano-technology debates. The descriptive, non-normative Systems of Innovation approaches should be linked into RRI debates to provide more evidence on whether the approach advocated to achieve responsible and ethical governance of research and innovation can indeed deliver on competitiveness. (shrink)

Responsible Research and Innovation (RRI) has emerged as a science policy framework that attempts to import broad social values into technological innovation processes whilst supporting institutional decision-making under conditions of uncertainty and ambiguity. When looking at RRI from a ‘principled’ perspective, we consider responsibility and justice to be important cornerstones of the framework. The main aim of this article is to suggest a method of realising these principles through the application of a limited Rawlsian Difference Principle in the distribution of (...) public funds for research and innovation. There are reasons why the world's combined innovative capacity has spewed forth iPhones and space shuttles but not yet managed to produce clean energy or universal access to clean water. (Stilgoe 2013, xii) I derive great optimism from empathy's evolutionary antiquity. It makes it a robust trait that will develop in virtually every human being so that society can count on it and try to foster and grow it. It is a human universal. (de Waal 2009, 209) Responsible Research and Innovation (RRI) has emerged as a science policy framework that attempts to import broad social values into technological innovation processes whilst supporting institutional decision-making under conditions of uncertainty and ambiguity. In this respect, RRI re-focuses technological governance from standard debates on risks to discussions about the ethical stewardship of innovation. This is a radical step in Science & Technology (S&T) policy as it lifts the non-quantifiable concept of values into the driving seat of decision-making. The focus of innovation then goes beyond product considerations to include the processes and – importantly – the purposes of innovation (Owen et al. 2013, 34). Shared public values are seen as the cornerstone of the new RRI framework, while market mechanisms and risk-based regulations are of a secondary order. What are the values that could drive RRI? There are different approaches to the identification of public values. They can be located in democratically agreed processes and commitments (such as European Union treaties and policy statements) or they can be developed organically via public engagement processes. Both approaches have advantages and disadvantages. For instance, although constitutional values can be regarded as democratically legitimate, their application to specific technological fields can be difficult or ambiguous (Schroeder and Rerimassie 2015). On the other hand, public engagement can accurately reflect stakeholder values but is not necessarily free from bias and lobbyist agenda setting. We argue that if RRI is to be more successful in resolving policy dilemmas arising from poorly described and uncertain technological impacts, basic universal principles need to be evoked and applied. When looking at RRI from a ‘principled’ perspective, we consider responsibility and justice to be important cornerstones of the framework. One could describe them in the following manner: Research and innovation should be conducted responsibly. Publicly funded research and innovation should be focused fairly on socially beneficial targets. Research and innovation should promote and not hinder social justice. The main aim of this article is to suggest a method of realising these principles through the application of a limited Rawlsian Difference Principle in the distribution of public funds for research and innovation. This paper is in three parts. The first part discusses the above principles and introduces the Rawlsian Difference Principle. The second part identifies how RRI is currently applied by public funding bodies. The third part discusses the operationalisation of the Rawlsian Difference Principle in responsible funding decisions. (shrink)

This collection examines how the field of ethics has developed over the past fifty years, by bringing together those articles that have been seminal in the development of the subject. Each of the six volumes carries an introduction presenting the historical context of the material, and a new index is provided to identify key philosophical themes and trends within the collection. The volumes are organized thematically, and include: * Vol.1: Nature and Scope * Vol. 2: Ethical Issues in Medicine, Technology (...) and the Life Sciences * Vol. 3: Ethical Issues in Medicine, Technology and the Life Sciences II * Vol. 4: Environment * Vol. 5: Business/Economics * Vol. 6: Politics. (shrink)

Liberal theories of social justicefocus predominantly on the national, ratherthan international, level, and where they doaddress international concerns they insist thatprinciples of justice at the national levelhave priority over principles at theinternational level. We question the coherenceof this arrangement, given liberal theory'scommitment to moral equality of persons as suchrather than to that of particular sets of persons. What isat issue is whether liberal theory can providea coherent basis for international justice atall. If it is to do so, we suggest that (...) it mustbe prepared to theorise beyond the nationstate, and to take a historical perspectivewhich takes into account the ways in whichcolonial power and exploitation have given riseto the problems of international justice weface today. (shrink)

edited by Doris Schroeder, welcomes contributions on all areas outlined below. Submitted papers are peer-reviewed. To submit a paper or to discuss suitable topics, please e-mail Doris Schroeder at [email protected].

In Jane Austen's Mansfield Park, Fanny, an 18-year-old orphan who lives with her aunt Lady Bertram, received an attractive offer of marriage, which she vehemently rejected and is not prepared to reconsider.

The European debate around genetically modified foods was one of the most sustained and ardent public discussions in the late 1990s. Concerns about risks to human health and the environment were voiced alongside claims that healthier foods can be produced more efficiently and in a more environmentally friendly manner using the new technology. The aims of this paper are to test the usefulness of Stephen Toulmin’s argumentation model for the analysis of public debates almost 50 years after it was first (...) introduced, and to establish whether any of the parties in the genetically modified food debate used seriously flawed argumentation. The paper argues that Stephen Toulmin’s argumentation model can be useful in three ways when analysing public debates. Firstly, incomplete or flawed claims can be defeated by exposing missing or mismatching argumentation elements; all examined arguments in the GM debate were well formulated. Secondly, weaknesses in argumentation can be identified by making explicit warrants and backing; in the GM case, this allowed the identification of points of attack for counter-argumentation. Thirdly, analysing the type of backing used, allows inferences about the persuasion approach taken. The industrialists employed ethical principles as their backing much more than the scientists and environmentalists, a surprising result. (shrink)

Trust in the "agro-food" sector has been declining in recent years reflecting a general decline of trust in traditional decision making processes. The introduction of new technologies in the production of foods re-introduces the problem of trust and highlights the parameters affecting its structure and direction. This paper discusses the issue of trust in relation to the introduction of functional foods into the market. Trust is assessed as both a philosophical and a psychological construct with particular emphasis on its communication (...) aspects. The paper ends with specific recommendations for action in the agro-food sector. (shrink)

“Globalisation is the Yeti of … newspapers. Everybody knows it, but nobody has ever seen it. What does it look like? Tall, monkeyish, hairy? Or rather weasel-like? With glasses? Like a ferret or a marten?” Globalization means different things to different people, a laudable development uniting humankind or an epidemic crushing the vulnerable peoples of the earth. Whether it is something we can control remains to be seen, but it is certainly upon us. The move to “go global” is such (...) a strong force that hardly any human activity is exempt. We have global treaties, global media, global celebrities, global bookstores, and even a global antiglobalization movement! a. (shrink)

Biomedical research is increasingly carried out in low- and middle-income countries. International consensus has largely been achieved around the importance of valid consent and protecting research participants from harm. But what are the responsibilities of researchers and funders to share the benefits of their research with research participants and their communities? After setting out the legal, ethical and conceptual frameworks for benefit sharing, this collection analyses seven historical cases to identify the ethical and policy challenges that arise in relation to (...) benefit sharing. A series of recommendations address possible ways forward to achieve justice for research participants in low- and middle-income countries. (shrink)