Despite existing international, regional and national guidance on how to obtain valid consent to health-related research, valid consent remains both a practical and normative challenge. This challenge persists despite additional evidence-based guidance obtained through conceptual and empirical research in specific localities on the same subject. The purpose of this paper is to provide an account for why, despite this guidance, this challenge still persist and suggest conceptual resources that can help make sense of this problem and eventually mitigate it’. This (...) paper argues that despite the existence of detailed official guidance and prior conceptual and empirical research on how to obtain valid consent, the question of ‘how to obtain and ascertain valid consent to participation in health-related research’ cannot always be fully answered by exclusive reference to pre-determined criteria/guidance provided by the guidelines and prior research’. To make intelligible why this is so and how this challenge could be allayed, the paper proposes six concepts. The first five of these are intended to account for the persistent seeming inadequacies of existing guidelines. These are fact-skepticism; guideline insufficiency; generality; context-neutrality and presumptiveness. As an outcome of these five, the paper analyzes and recommends a sixth, called bioethical reflexivity. Bioethical reflexivity is reckoned as a handy tool, skill, and attitude by which, in addition to guidance from context-specific research, the persisting challenges can be further eased. Existing ethical guidelines on how to obtain valid consent to health-related research are what they ought to be – general, presumptive and context-neutral. This explains their seeming inadequacies whenever they are being applied in concrete situations. Hence, the challenges being encountered while obtaining valid consent can be significantly eased if we appreciate the guidelines’ nature and what this means for their implementation. There is also a need to cultivate reflexive mindsets plus the relevant skills needed to judiciously close the unavoidable gaps between guidelines and their application in concrete cases. This equally applies to the gaps which cannot be filled by reference to additional guidance from prior conceptual and empirical research in specific contexts. (shrink)

Responses to public health emergencies can entail difficult decisions about restricting individual liberties to prevent the spread of disease. The quintessential example is quarantine. While isolating sick patients tends not to provoke much concern, quarantine of healthy people who only might be infected often is controversial. In fact, as the experience with severe acute respiratory syndrome (SARS) shows, the vast majority of those placed under quarantine typically don't become ill. Efforts to enforce involuntary quarantine through military or police powers also (...) can backfire, stoking both panic and disease spread. Yet quarantine is part of a limited arsenal of options when effective treatment or prophylaxis is not available, and some evidence suggests it can be effective, especially when it is voluntary, home-based and accompanied by extensive outreach, communication and education efforts. Even assuming that quarantine is medically effective, however, it still must be ethically justified because it creates harms for many of those affected. Moreover, ethical principles of reciprocity, transparency, non-discrimination and accountability should guide any implementation of quarantine. (shrink)

There is more to modern health than new scientific discoveries, the development of new technologies, or emerging or re‐emerging diseases. World events and experiences, such as the AIDS epidemic and the humanitarian emergencies in Bosnia and Rwanda, have made this evident by creating new relationships among medicine, public health, ethics, and human rights. Each domain has seeped into the other, making allies of public health and human rights, pressing the need for an ethics of public health, and revealing the rights‐related (...) responsibilities of physicians and other health care workers. (shrink)

The late Jonathan Mann famously theorized that public health, ethics, and human rights are complementary fields motivated by the paramount value of human well-being. He felt that people could not be healthy if governments did not respect their rights and dignity as well as engage in health policies guided by sound ethical values. Nor could people have their rights and dignity if they were not healthy. Mann and his colleagues argued that public health and human rights are integrally connected: Human (...) rights violations adversely affect the community's health, coercive public health policies violate human rights, and advancement of human rights and public health reinforce one another. Despite the deep traditions in public health, ethics, and human rights, they have rarely cross-fertilized—although there exists an important emerging literature. For the most part, each of these fields has adopted its own terminology and forms of reasoning. Consequently, Mann advocated the creation of a code of public health ethics and the adoption of a vocabulary or taxonomy of “dignity violation”. (shrink)

The late Jonathan Mann famously theorized that public health, ethics, and human rights are complementary fields motivated by the paramount value of human well-being. He felt that people could not be healthy if governments did not respect their rights and dignity as well as engage in health policies guided by sound ethical values. Nor could people have their rights and dignity if they were not healthy. Mann and his colleagues argued that public health and human rights are integrally connected: Human (...) rights violations adversely affect the community's health, coercive public health policies violate human rights, and advancement of human rights and public health reinforce one another. Despite the deep traditions in public health, ethics, and human rights, they have rarely cross-fertilized—although there exists an important emerging literature. For the most part, each of these fields has adopted its own terminology and forms of reasoning. Consequently, Mann advocated the creation of a code of public health ethics and the adoption of a vocabulary or taxonomy of “dignity violation”. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.