The ethical challenges inherent in human genomic research are many — researchers must balance the privacy of study participants with efficient sharing of data and informed consent with the need to use DNA in a variety of different ways. In the US, California is the most recent state to debate a bill that would give study participants more control over the use of their genetic data.
But while ethical considerations are important, research can't stop or slow down every time an innovation or new field of study comes along. That's where books like Ethical Challenges in Genomics Research come in. The book is written by University of Oxford philosophy lecturer and ethicist Paula Boddington. In 2007, Boddington was appointed to a post in Oxford's Medical Sciences Division, and became the in-house ethicist for the Procardis Consortium — an international group of genomics researchers and biotech and pharmaceutical companies investigating the underlying genetic factors of cardiovascular disease. "In engaging with the scientists, I came to consider that there was a strong general need on all sides for further mutual understanding and dialogue between those with different disciplinary backgrounds," she writes. "There is great scope for building the capacity to think through complex issues in ethics."
Boddington's roots in philosophy shine through as she discusses what ethics is and what it is not, and makes a case for why ethics is needed in human genomic -research. She includes case studies and concrete examples of both ethical and unethical behavior that serve to enlighten the reader. The book is hardly a page-turner — the tone is rather appropriately dry throughout. But it is also appropriately informative, and serves its purpose well.
Such texts will never be the be-all and end-all of ethical consideration in the research community, but they are a good place to start. Boddington's book begins in a general way, framing the genomic ethics debate for the reader. But it doesn't just go on about what researchers should do to behave ethically — the book's strong point is that it asks questions, forcing the readers to think about the answers for themselves.
Of particular interest is the section on data sharing — this chapter, more than any other, places genomic research in a societal context and illustrates the importance of striking the right balance between a study participant's rights and a researcher's needs.
Boddington herself acknowledges that her book is not the end of the discussion. "As I reach the end of the book, it is even more apparent to me how many difficult, diverse, and finely nuanced questions have only been touched upon, and how many more have not even been raised," she says. This text may provide the most benefit to those who are at the beginning of their scientific careers, like graduate students or postdocs. It would give them a solid foundation in how to think critically about ethical issues in their own research.