Doris Schroeder

Human genetic banking: altruism, benefit and consent

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 Councils ‘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 (especially that of commercial interest)—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.

Vulnerability: too vague and too broad?

© 2009 Cambridge University Press. Online edition of the journal is available at http://journals.cambridge.org/action/displayJournal?jid=CQH

Benefit sharing: it’s time for a definition

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.

Dignity: Two Riddles and Four Concepts

“Dissecting Bioethics,” edited by Tuija Takala and Matti Hayry, welcomes contributions on the conceptual and theoretical dimensions of bioethics. The section is dedicated to the idea that words defined by bioethicists and others should not be allowed to imprison peoples actual concerns, emotions, and thoughts. Papers that expose the many meanings of a concept, describe the different readings of a moral doctrine, or provide an alternative angle to seemingly self-evident issues are therefore particularly appreciated. The themes covered in the section so far include dignity, naturalness, public interest, community, disability, autonomy, parity of reasoning, symbolic appeals, and toleration. All submitted papers are peer reviewed. To submit a paper or to discuss a suitable topic, contact Tuija Takala at tuija.takala@helsinki.fi. I would like to thank research seminar members at the Centre for Applied Philosophy and Public Ethics at the University of Melbourne, Australia, Armin Schmidt, Julie Lucas, and Tuija Takala for their helpful comments.

Dignity: one, two, three, four, five, still counting.

© 2010 Cambridge University Press. Online edition of the journal is available at http://journals.cambridge.org/action/displayJournal?jid=CQH

Realizing benefit sharing - the case of post-study obligations

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.

Responsible Research and Innovation in Industry:The Case for Corporate Responsibility Tools

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.

Access to Life-Saving Medicines and Intellectual Property Rights: An Ethical Assessment

© 2011 Cambridge University Press. Online edition of the journal is available at http://journals.cambridge.org/action/displayJournal?jid=CQH

Sharing Benefits Fairly: Decision-Making and Governance

Understanding how decisions were made by the San in the Hoodia case and how decision-making and governance structures vary between bioprospectors and indigenous communities is essential for the implementation of effective benefit sharing.

Justice and Benefit Sharing

Benefit sharing as envisaged by the Convention on Biological Diversity (CBD) is a relatively new idea in international law. In 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.