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Whose profit? Why bioethics needs a global perspective

Global justice and human rights are remarkably absent in discussions of bioethics. Julien Harneis

Innovations deriving from genetics research, stem cell research, nanoscience and neuroscience will soon revolutionise medicine.

With the potential for biotechnologies to alter natural processes and redefine what it means to be human, it’s hardly surprising that there’s been growing interest in bioethical issues.

Bioethics as a field

Bioethics has grown rapidly as a professional field since its emergence in the United States in around 1970.

While it is multi-disciplinary in perspective, in practice the field is dominated by moral philosophy, a discipline concerned with articulating and defending the rights and wrongs of behaviours.

So bioethics has been preoccupied with applying abstract principles to concrete situations. For example, the principle of autonomy has been applied to research involving human subjects.

These abstract principles – autonomy, beneficence, non-maleficence, and justice – were pioneered and popularised by Tom Beauchamp and James Childress, in their multi-edition book Principles of Biomedical Ethics, originally published in 1979.

While such principles have served, and to some extent continue to serve, a useful purpose in the field, the limits and indeed dangers of their application are becoming increasing apparent.

As one bioethicist has argued, the doctrinal application of bioethics principles, or so-called principlism, has “thinned” public debate on substantive questions arising from new biotechnologies.

According to prevailing accounts of bioethics’ history, these principles were originally developed to resolve dilemmas arising from the increasing use of technologies in biomedical research and practice.

These dilemmas include the use of life support systems, such as dialysis machines, and technologies of reproduction. Both of these challenged established definitions of life and death.

Challenges to research ethics

Ethics protocols pertaining to informed consent, the right to privacy, the right to withdraw from research, and so on, reflect the concern with protecting the autonomy and well-being of individual patients and research subjects.

But more and more, bioethics principles have been applied to new contexts, often involving whole populations who are participating in research projects of long duration.

This is evident in the advent of national biobanks, which comprise genetic and personal medical information, often held for many decades.

Highly publicised examples are Iceland’s Health Sector Database and the UK Biobank.

It is impossible for individuals to know what they are consenting to when research purposes are unspecified at the outset, which is mostly the case with such collections, and when the information involved can affect many people’s lives in the future.

But my concern with bioethics goes beyond the application of the principle of informed consent.

Bioethics in a global world

Many areas of biotechnology involve large research programs involving complex networks of researchers and other supporting actors, who are often located in different parts of the world, and who sometimes hold very different views on the ethics of research.

Biomedical research and development increasingly calls for considerable public and private sector funding. The latter is mostly provided by multinational biotechnology and pharmaceutical companies, whose primary concern is generating profit.

This global spread of research and development expertise and enterprise was evident with the Human Genome Project, which involved large teams of researchers from around the world.

In this context, some commentators have begun to wonder not only whether too much is expected of bioethics in resolving problems posed by new technologies, but also whether bioethics and its principlism present their own dangers.

Elephant in the room?

Bioethics has largely ignored politico-economic questions, such as the sources of biomedical research funding, who decides how scarce resources are allocated, who wins and who loses from new technologies, and who ultimately owns innovations.

My recent survey of articles on stem cell research illustrated the narrow focus of bioethics and how this works to de-politicise related issues.

The articles surveyed were published between 2000 and 2009 in two top bioethics journals, Bioethics, and The American Journal of Bioethics.

I found a strong bias towards articles focusing on the moral status of the embryo and arguments for and against donating or using human embryos in research and alternatives to using embryos.

The debates in these journals reflect a general disinclination among those in bioethics communities to engage with “big picture” issues pertaining to new biotechnologies.

These include the ethics and global justice implications of research funding priorities, the process of knowledge production, and the potentially far-reaching personal and social implications of pursuing particular research agendas.

Given the rapid pace of technological development, there’s an urgent need to develop new critical perspectives on the biosciences and biotechnologies.

Priority should be given to questions of global justice and human rights. It should be given to redressing the democratic deficit that excludes the majority of citizens from decisions shaping the direction of science and technology.

The key question shouldn’t be how we manage the dilemmas posed by biotechnologies but rather what kind of future do people want and to what extent and how may technologies be used to help its realisation.

The Politics of Bioethics by Alan Petersen, published by Routledge, New York, is now available.

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