ABSTRACT
It seems appropriate to come to this topic of diversity and justice towards the end of this book, as we wrap up the exploration of what has happened in genetics and society, and before we turn to the future, the newly arising forms of producing and using genetic knowledge. Questions of diversity and justice are pragmatic: they are of the ‘so what?’ variety. And so it made sense that the book began with a presentation of ‘here’s what can be done’ (biomedical applications of the new genetic technologies), and moved to ‘follow the dollar’ (or pound or euro or yen) as it looks at the commercialisation of the technologies. Then the book turned to how these technologies are (re)presented, the images we construct and the stories we tell ourselves. At that point, the desire for a guiding hand begins to come in: wait! What shall we do?
And so the book offered a discussion of regulation (legal control) and bioethics (moral or ethical hand-wringing about how little we actually can do and are doing, given all those biomedical and economic pressures). And now, most of the way through, it is time to step back a bit, and see what are the social, political, historical implications of all this work, what this is like ‘on the ground’. This ordering could work for a book on just about any science and society topic: new
sciences and technologies come along, and we – social scientists, ethicists, legal scholars, lay people, all of ‘us’ outside of the science – stop, marvel, wonder and worry. Similar issues arose with very early biomedical technologies, (anaesthesia, early surgeries) with more recent, higher-tech interventions (organ transplants, artificial life-support, mood/ consciousness-altering drugs) and are clearly bearing down on us with the new neurosciences. Each science and technology step forward brings us ordinary people to a new vantage point, a new moment to reconsider who we are and what we are doing, what it means to be a human being. But the genetic sciences hold a particularly fraught position with regard to these
questions: genetics has been notoriously implicated in questions around social inequality and injustice. Any student of this past century’s history can see that genetics is not just one more wave of science: it has been a tsunami, swirling, tossing and creating unthinkable horror. Genetics has a social form, ‘eugenics’, a set of social reasonings and power relationships that other sciences do not have. Other sciences do, absolutely, get used for evil purposes, by good and by evil people – but they have managed to keep the
underlying philosophy separate from the uses. Physics remains a neutral science in the popular imagination, even as most of us grew up under the shadow of annihilation by the atomic bomb. The other biomedical technologies manage to separate their science from their practice: the very logic of organ transplants is not what people now see as dangerous, but the potential misuse of the technology does – reasonably – worry people. Not quite the case with genetics: it is a constant struggle for geneticists to separate out
what they are doing from the logic of eugenics. The blurring and intertwining of boundaries has been a problem from the start for the new genetics: how to reclaim science from its unthinkably unsavoury past. The point at which the new genetics seeks to distance itself from older genetic policies is over the issue of autonomy: the older versions, known as ‘eugenics’, involved state intervention in the form of coercion. New policies are all about autonomy. Thus control confronts autonomy as the new genetics supplants the old eugenics, and blame moves from the state to the individual for bad decisions. Some, like Ruth Cowan (2008) claim that it is coercion itself that defines the old
eugenics – if people are not being forced to use the technologies such as prenatal diagnosis and selective abortion, not forced to abstain from procreating ‘bad genes’, then it simply isn’t eugenics but choice, glorious choice. Others of us are far from convinced that force was ever the hallmark of the old eugenics.1 And some of us deconstruct the notion of ‘choice’ and find it sadly lacking.2 Choice is a market concept, not well suited to understanding complex life decisions.3
