Doris Schroeder

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.

Over the past decade the welfare state has come under sustained attack not only from quarters which never approved of its policies, but also from political theorists who used to support it. With the collapse of communism, the policy of comprehensive welfare provision came under renewed scrutiny. It was argued that its impact on work incentives is most detrimental. Examining in detail current unemployment debates within Western welfare states, this book seeks to verify or refute the view that non-work is increasingly chosen by work shy individuals - the 'pathological' theory of unemployment. Drawing from a range of disciplinary perspectives - from social philosophy and the history of philosophy, to occupational psychology and feminist economics - this interdisciplinary analysis reveals that the "pathological" theory of unemployment, with its reliance on a deficient depiction of human nature and its disregard of non-pecuniary work incentives and empirical evidence on benefit fraud, cannot be upheld.

This paper critically analyses the position that basic income schemes foster idleness and thereby create harm. The view is based on an alleged empirical link between idleness and violent crime and an equation of non-activity with the creation of burden for others. It will be argued that the empirical claim is weak because it relies on conjectures derived from studies on unemployment. In addition, opponents arguing that basic income leads to an unfair distribution of burden between `lazy idlers'' and `honest taxpayers'' have to face three questions. Is the distribution of onerous or unpleasant work fair? Is the distribution of work burdens between paid and unpaid workers equitable? Is the distribution of work between the unemployed and the employed fair? None of these questions can be answered in the affirmative. Hence, it can be confirmed that the `idleness'' argument against basic income relies on unfounded premises.

Has history assigned special obligations to Germans that can transcend generation borders? Do the grandchildren of Holocaust perpetrators or the grandchildren of inactive bystanders carry any obligations that are only related to their ancestry? These questions will be at the centre of this investigation. It will be argued that five different models of justification are available for or against transgenerational obligations, namely liberalism, the unique evil argument, the psychological view, a form of consequentialist pragmatism and the community-based approach. Only two of these models stand up to philosophical scrutiny. Applying the community-based model leads to the conclusion that young Germans do indeed have indirect, indeterminate, but strict obligations that transcend generation borders. However, it will be argued that only the obligation of compensation can be restricted to Germans. The remaining two Holocaust-related obligations of prevention and remembrance have to be seen as universal.

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.

BMJ Editorial Campaigners are calling on policy makers at next week's sixth World Trade Organization ministerial conference in Hong Kong to make trade fairer for and improve the lives and health of the world's poorest people. This broad and important aim may dominate the headlines, but ministers will also be discussing technical issues surrounding international patenting laws. One issue with implications for the development of medical products is the tension between international patenting laws and benefit sharing requirements, which may threaten agreements on protecting biodiversity. If the biodiversity door shuts because of protests in developing countries, pharmaceutical research will be seriously hampered.

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.

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.

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

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.

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

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

The concept of Homo economicus, one of the major foundations of neoclassical economics and a subset of the ideology of laisser-faire capitalism, was recently charged and tried in the island high court. Using the island's virtual jury system for the first time, the accused was tried before a jury of three - Plato, Schopenhauer and feminist economists - chosen by him while under a veil of ignorance of the charge. All three returned guilty verdicts. Plato's was prescriptive: 'One ought not to be like Homo economicus'. Schopenhauer's verdict was descriptive: Human nature is not Homo economicus'. The feminist verdict was both. Following the trial - described as a thought experiment - the island's resident philosopher put forward two claims: (a) Neoclassical economists base their theories on a deficient depiction of humankind (descriptive misconception) a claim supported by a witness expert in experimental economics; (b) The depiction holds a dominant but unjustified position in various discourses such as welfare state debates because it is promoted by a small but highly influential group of economically privileged, university-educated whites, namely graduates of economics, a claim supported by the sociology expert witness.

Rationing and patient selection is inevitable in medical care, but in its most extreme form—when doctors and nurses decide about life and death—it is an almost unbearable burden for the profession. Eric Goemare, the Head of the South African Mission of Médicins Sans Frontières (MSF) and his staff faced three equally difficult selection issues when rolling out antiretroviral treatment to HIV/AIDS patients in South Africa. Initially, the treatment had to be rationed due to lack of financial resources. Today, rationing is mostly due to lack of human resources. But at the same time, patients are being deselected because of nonadherence to the treatment regime to avoid the creation of multi-drug-resistant strains of the HIV virus.

“Human rights” is a global topic. As soon as one agrees that a right is a human right, one cannot restrict it to certain groups. People have human rights by virtue of their humanity, not by virtue of their nationality, their status, their gender, their ethnicity, and so forth. This is why the topic is one of the most exciting, but also one of the most contentious discussed in the humanities and the social sciences. It is a topic that suggests numerous questions in three main areas: concept, content, and enforcement.

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.”

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.

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

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.