Geneva Statement on Heritable Human Genome Editing: The Need for Course Correction.

As public interest advocates, policy experts, bioethicists, and scientists, we call for a course correction in public discussions about heritable human genome editing. Clarifying misrepresentations, centering societal consequences and concerns, and fostering public empowerment will support robust, global public engagement and meaningful deliberation about altering the genes of future generations.

Introduction to the article collection 'Translation in healthcare: ethical, legal, and social implications'.

New technologies are transforming and reconfiguring the boundaries between patients, research participants and consumers, between research and clinical practice, and between public and private domains. From personalised medicine to big data and social media, these platforms facilitate new kinds of interactions, challenge longstanding understandings of privacy and consent, and raise fundamental questions about how the translational patient pathway should be organised.This editorial introduces the cross-journal article collection "Translation in healthcare: ethical, legal, and social implications", briefly outlining the genesis of the collection in the 2015 Translation in healthcare conference in Oxford, UK and providing an introduction to the contemporary ethical challenges of translational research in biology and medicine accompanied by a summary of the papers included in this collection.

The commercialization of human eggs in mitochondrial replacement research.

After the development of induced pluripotent stem cells (IPSCs) in 2007, the pressure to commercialize women's eggs for stem cell research could have been expected to lessen. However, the pressure to harvest human eggs in large quantities for research has not diminished; rather, it has taken different directions, for example in germline mitochondrial research. Yet there has been little acknowledgement of these technologies' need for human eggs, the possible risks to women and the ethical issues concerning potential exploitation. Rather, there has been a renewed campaign to legalize payment for eggs in research, although the actual scientific advances are at best modest. This article shows why a market in women's eggs is ethically problematic in terms of the doctor's duty to do no harm and the limitations of 'informed' consent.

Regulating (or not) reproductive medicine: an alternative to letting the market decide.

Whilst India has been debating how to regulate 'surrogacy' the UK has undergone a major consultation on increasing the amount of 'expenses'paid to egg 'donors', while France has recently finished debating its entire package of bioethics regulation and the role of its Biomedicine Agency. Although it is often claimed that there is no alternative to the neo-liberal, market-based approach in regulating (or not) reproductive medicine--the ideology prevalent in both India and the UK--advocates of that position ignore the alternative model offered by France's tighter regulation, as well as its overarching concern with protecting the vulnerable and ensuring social justice. Whilst the concepts underpinning the French model of regulation also have their provenance in Western political philosophy and not in the developed world, they embody a very different attitude and suggest that there is indeed an alternative to letting the market decide. However, even in France that alternative is highly contested.

Gender and ethics committees: where's the 'different voice'?

Prominent international and national ethics commissions such as the UNESCO International Bioethics Committee rarely achieve anything remotely resembling gender equality, although local research and ethics committees are somewhat more egalitarian. Under-representation of women is particularly troubling when the subject matter of modern bioethics so disproportionately concerns women's bodies, and when such committees claim to derive 'universal' standards. Are women missing from many ethics committees because of relatively straightforward, if discriminatory, demographic factors? Or are the methods of analysis and styles of ethics to which these bodies are committed somehow 'anti-female'? It has been argued, for example, that there is a 'different voice' in ethical reasoning, not confined to women but more representative of female experience. Similarly, some feminist writers, such as Evelyn Fox Keller and Donna Haraway, have asked difficult epistemological questions about the dominant 'masculine paradigm' in science. Perhaps the dominant paradigm in ethics committee deliberation is similarly gendered? This article provides a preliminary survey of women's representation on ethics committees in eastern and western Europe, a critical analysis of the supposed 'masculinism' of the principlist approach, and a case example in which a 'different voice' did indeed make a difference.

Consent, commodification and benefit-sharing in genetic research.

The global value of the biotechnology industry is now estimated at 17 billion dollars, with over 1300 firms involved as of the year 2000.(2) It has been said that 'What we are witnessing is nothing less than a new kind of gold rush, and the territory is the body.' As in previous gold rushes, prospectors are flooding into unexplored and 'wide open' territories from all over the world, with possible ramifications for exploitation of Third World populations. These territories are also the Wild West of bioethics insofar as the law has very little hold on them: existing medical and patent law, such as the Moore and Chakrabarty cases, exert little control over powerful economic interests in both the United States and Europe. In the absence of a unified and consistent law on property in the body, the focus is increasingly on refining the consent approach to rights in human tissue and the human genome, with sensitive and promising developments from the Human Genetics Commission and the Department for International Development consultation on intellectual property. These developments incorporate the views of vulnerable genetic communities such as Native Americans or some Third World populations, and should be welcomed because they recognise the power imbalance between such groups and First World researchers or firms. However, they also highlight the continued tension about what is really wrong with commodifying human tissue or the human genome. Where's the injustice, and can it be solved by a more sophisticated consent procedure?

Evidence-based medicine and quality of care.

In this paper we set out to examine the arguments for and against the claim that Evidence-Based Medicine (EBM) will improve the quality of care. In particular, we examine the following issues: 1. Are there hidden ethical assumptions in the methodology of EBM? 2. Is there a tension between the duty of care and EBM? 3. How can patient preferences be incorporated into quality guidelines and effectiveness studies? 4. Is there a tension between the quality of a particular intervention and overall quality of care? 5. Are certain branches of medicine and patient groups innately or prima facie disadvantaged by a shift to EBM? In addition we consider a case study in the ethics of EBM, on a clinical trial concerning the collection of umbilical cord blood in utero and ex utero, during or after labour in childbirth.