Ethical Challenges in Genomics Research: A Guide to Understanding Ethics in Context
By Dr Paula Boddington
Published by Springer
ISBN-10: 3642236987, ISBN-13: 978-3642236983
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While it's not designed to be something that is read from cover to cover, this textbook is clearly and well written, readable and accessible, with regular call-out boxes providing examples and case studies. According to the publisher, the text is aimed at researchers, participants and policy makers, but I feel that, realistically, most of the market will be researchers. It provides perhaps a little too much detail for participants and policy makers, particularly those with little prior knowledge of science or ethics. Pulling out conclusions as bullet points, perhaps in a separate section, could have made it more accessible for these groups.
Boddington opens by establishing the case for ethics in genomics research, raising the oft-cited concerns of eugenics and racism as a reason for, or a potential outcome of, this field of study. However, while books like this can often focus only on where things have gone wrong, this one does include some excellent examples of ethical research. And while ethics and ethics committees can seem like obstructions to many researchers, Boddington points out that these can actually raise the standards of research.
In chapter four, Boddington introduces critical reasoning and analysis in ethics. She makes some excellent points on critical reading that are useful guidelines for anyone who regularly reads scientific papers or articles about any field of science. She guides readers on looking for arguments and evidence, seeing how the authors use concepts and language, analysing the conclusions, looking for assumptions, and seeing the context in which the papers or articles are placed.
After this chapter, the book becomes more focused on genomics, and unpacking the specific ethical issues that surface there. These include the potential harm that could arise from genomics research (as well as the potential good), the need for confidentiality, privacy and informed consent, and the rights of the individual as balanced against the needs of the community.
Ethics and science do not exist in a vacuum – they sit within society, industry and academia, and are shaped by each of these. When considering ethics, Boddington explains, it is important to be aware of institutional hierarchy, and of the pressures of time, money and performance.
The chapter on 'Respect for persons in research and in genetics' is interesting from an ethical, sociological and scientific perspective, looking at examples of how the respect for individuals has been both used and misused.
The book concludes with a section on data-sharing in genomics, which leads to ethical issues for both researcher and participant. Sharing data is important for humanity as a whole, but comes up against privacy issues for the individual, and both must be balanced.
The conclusions, study questions, 'Coming up next' and reference sections in each chapter are useful, as is the glossary at the back. My only criticism – and it's a mild one – is that the text takes a while to get to applications in genomics. Much of the first half serves as an introduction to medical ethics rather than the ethics of genomics. This makes it useful to a beginner in ethics, as, to be fair, many readers will be - but potentially a little frustrating to someone who already has some knowledge in the field.
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