11 October 2010
ByAppeared in BioNews 579
Debating Human Genetics: Contemporary Issues in Public Policy and Ethics
Published by Routledge
ISBN-10: 0415451108, ISBN-13: 978-0415451109
Buy this book from Amazon UK
It is almost a cliché to say that genetics has moved beyond the boundaries of science, penetrating social and cultural understandings of ourselves as individuals and social beings. Dr Alexandra Plows' book Debating Human Genetics is in this sense not a ground-breaking contribution. The book is the product of a three-year academic project. In it, Dr Plows approaches the social phenomena of the 'gene' by examining the ways different people or 'publics' are engaging with human genetics.
The book covers some of the most emblematic areas of debate and public engagement in human genetics. From stem cells, cloning and bio banks to pharmacogenetics and informed consent, Dr Plows covers a lot of ground. The chapters are formulaic with the first part providing an overview of the science and public discussion. The second part examines how different groups engage with the science, drawing extensively from primary research material.
The human genetics and ethics issues discussed in Debating Human Genetics are obvious, sometimes giving the feeling of covering well-trodden ground. For example, discussions around saviour siblings, screening and the disability movement can feel repetitive. However, Dr Plows uses these debates to look deeper into how genetic discourses are being framed.
The sociological concept of 'framing' is central to how the book questions how certain issues are prioritised. For example, the Human Fertilisation and Embryology Authority's (HFEA) 2006 consultation on donating eggs was framed in the context of informed consent. Informed consent was presumed to make the process socially acceptable. As Dr Plows states, this framing takes place when the question posed is not 'what are the issues?', but 'we have outlined some issues you might like to discuss'.
The question addressed throughout the book is 'What is public engagement and what is it for?' Dr Plows is keen to separate public consultation and policy work from public engagement as 'social movement' and provides a 'cast list' of the publics she examines. First, Dr Plows identifies 'sustainability citizenship'networks- groups focusing on social and environmental justice and equality. Second, Dr Plows identifies 'Pro-genetics' patient groups and advocates who proactively support human genetics, mainly in 'bioscience' research.
Dr Plows is careful to draw attention to the limitations of 'pro' and 'anti' genetic positions such as 'pro-life' and 'pro-choice'. She uses the example of the campaign group Hands Off Our Ovaries (HOOO) to demonstrate how "pro-life" groups such as CORE have formed alliances with feminist groups who reject the implications of research using human eggs. However, while Dr Plows is clearly sensitive to the complexities of how different publics engage with genetics, she tends to too easily characterise positions as 'pro' or 'anti'.
Dr Plows also concerns herself with power relations with the human genetics debate, as expected for a sociological study. In Chapter 6 'Genetic exceptionalism, health, identity and citizenship', one of Dr Plows' central concerns is that geneticisation is leading to a genetic public health agenda being prioritised. Money is invested in bio banks rather than addressing environmental pollution and poverty, which we know will improve public health.
Dr Plows raises an important point about the propensity to prioritise genetic information on the assumption it will provide meaningful genetic knowledge. However, she also falls into the 'anti gene' trap by failing to address the reality that public health programmes are not always 'common sense' and are costly. Poorer people have poorer health in developed countries, but it is ill informed to assume that reversing this correlation would be an easier and cheaper alternative to investment in genetic technologies. We should be working to go beyond pitting traditional public health measures against genetic research.
The idea of 'future promise' is among the most interesting themes of the whole book. As Dr Plows notes, 'future promise' is the rhetoric found on charity websites, patient group manifestos and in medical research bumf imagining what genetics holds for our futures. In public engagement, future promise is equated by publics to progress. Criticising future promise, such as pointing out the limited outcomes from pharmacogenetics, is seen as anti-progress.
Dr Plows argues: 'the meaning people give to genetics in the here and now… influence the way they invoke the future'. Promised futures are not facts, but projections of our hopes, desires and fears about what genetic sciences may bring into fruition. These projected ideas dominate public engagement and vary, depending on whether we are health fanatics, those living with genetic disorders or those concerned about the distribution of funds.
Public consultation remains central to public policy. Reconsidering how publics engage in human genetics provides valuable food for thought, although the feeling of déjà vu is hard to shake off. This book makes some interesting observations and, while academic, it is accessible to a wider audience thanks to the generous inclusion of qualitative data.
Buy Debating Human Genetics: Contemporary Issues in Public Policy and Ethics from Amazon UK.