Genetics as Social Practice is a rich, interesting, interdisciplinary book bringing together works from disciplines such as sociology, anthropology, ethics, philosophy, biomedicine, and the arts. In their introduction, the three editors set the scene by bringing together several developments that shape the field of genetics today. They discuss the convergence of many different areas, such as epigenetics, “big biology,” and epidemiology, without which genetic practice in its contemporary iteration cannot be understood. The book is then divided into three parts.
Part 1, Creating Identities, looks into the potential benefits and hazards of direct to consumer personal genomic testing. The first chapter by Fishman and McGowen argues that empirical research into this topic shows that despite the presentation of this technology as extraordinary, and despite social science theories speculating about its possible dramatic effects on identity formation, the fact of the matter is that neither utopic nor dystopic views can be fully supported. Users of personal genome tests seem to get neither anxious about their results, nor do they embrace healthier lifestyles.
Relatedly, the next chapter by Josef Quitterer asks about the philosophical concept of the self in a post-clinical age of genetics. He argues that it remains unclear how genomic information relates to the autobiographical and social levels of the self. This is followed by Troy Duster's discussion of ancestry testing, which clearly demonstrates how limited it is in telling us “who we are” or who our ancestors were. The industry of ancestry testing thus touches upon, to say the least, illusions – or worse still, deception. While Duster stresses how scientifically flawed, dangerously seductive and misleading ancestry testing is, other issues are less addressed: Why are we still asking questions about race, and What social significance does our imagined collective history play in the world today?
The next three chapters dealing with art works do not fit within usual categories such as cultural or science studies, science, ethics, or art, but are a reflection on their interdisciplinary connections. For me, this special point of view, integrating artistic explorations into an academic book, is the unique contribution of the monograph, which forms an extremely thought-stimulating input. The chapter by Gieseler, Diener, and Huerzeler, for instance, discusses the artistic works of Diener and Huerzeler and unravels how ideas and understandings about where we come from, or how we belong, are made. In a way, it addresses what I was missing in the former chapters; namely, a contemplation about what is this age-old longing to know more about where we come from, and who are we related to, and how is it related to social power relations.
The juxtaposition of art and science beautifully portrays how both tell stories and use metaphors to address huge gaps in knowledge; for example, about where we come from. However, it seems that whereas science is haunted by its drive to close these gaps, art is better equipped to allow itself the freedom of letting the gaps, the messiness, the lack of order, the mystery, just be, and speak its own language. The questions this juxtaposition provoked in me pertain to the role of the social sciences in this. How do we try to form meaning, to order the world, to make sense of acquired data and make science speak? What are the questions we are posing? Can we (like the arts) tolerate complex, ambiguous, and non-linear stories, or are we also captives of more positivistic logics that engender more reductionistic and deterministic “explanations” of the world around us?
In the second part of the collection, Sharing Knowledge, chapters discuss how “Big data” challenges traditional concepts such as intellectual property, privacy, confidentiality, and the opposition between individualist and communitarian categories, thus presenting ongoing issues for governance systems. It also opens new possibilities of participation for non-experts, further blurring the distinction between science and society, lay v. professional.
The next fascinating chapter by Werner-Felmayer, discussing genetics in a consumerist age, beautifully traces the analogies between for example product barcodes and DNA sequences, thus making it possible to think of humans as products of their genomes. The essay suggests that such deterministic, reductionist approaches to life match better than complex ones with consumerist societies. This way the genome can be engineered, patented, and marketed like any other product on the market. If this is so, very important questions arise such as: can I be barcoded like a product? Do I have to buy my own genetic information in order to own it? And what can and shall I do with this information?
These questions lead to the following chapter, by Sterckx and Cockbain, about the ethics of patenting in genetics, discussing fundamental questions such as are human genes, which are a product of nature, a suitable subject matter for patents? Does consent to research equate to consent to patenting? And what is a discovery vs. an application, or where does nature end and human products begin, and thus become patentable? Both this chapter and the previous one by Werner-Felmayer express worries about the extreme powers of the market and its profit mechanisms, to shape the world we live in.
The third and final part of the collection, Participating in the Social Laboratory, opens with a chapter by Barbara Prainsack which develops a schema for understanding and classifying citizen science projects. It then discusses the 23andMe personal genomics company testing in light of the offered schema, and asks how is it that 23andMe, which involves its participants more than any of the other companies on the market, has nonetheless attracted most criticism. The answer has to do both with its financial structure, but also with the fears it raises, as it blurs social categories and unsettles existing orders. Chapter 10, by Gisli Palsson, continues with studying personal genomics services, which offer both genetic risk assessment and ancestry testing. Palsson's fascinating take on this issue centers on the people who subscribe to such services, offering to view them not as consumers but rather as laborers. Once they are so perceived the following questions are: how can their contribution be properly acknowledged, and what kind of regimes of governance and property would this entail?
In the next chapter, Raz, Rimon-Zarfaty, Inthhorn and Schicktanz contribute an important comparative perspective, looking at differences in “lay” attitudes toward predictive genetic testing for late-onset diseases in Germany and Israel. The findings reveal that commitment to family members, genetic responsibility and trust in science and its probabilistic methods are significantly different among cultures, an important fact to remember if we wish to have a nuanced understanding of genetics as social practice. The closing chapter by Schiktanz and Kogel revisits the concept of genetic responsibility by looking at the test case of genetic prediction of Alzheimer's disease. The authors convincingly develop a broad concept of genetic responsibility, which is not a causal one, past oriented, evoking guilt, punishment, or blame. Rather, it offers to think of responsibility as a practical dimension of care and compassion for loved ones, with a future orientation.
To conclude, what biomedicine is experiencing today is an explosive growth of data. What is striking about these data is that they come with immense difficulty of making sense and meaning from it. For me, this inspiring book tells intriguing stories about how we humans struggle through these processes, and think about ourselves, our societies, and our mutual ties and obligations in this era of genomics. With much information but less understanding, we are left with considerable space for cultural work, for struggles to simplify complexity, for efforts to commercialize data, and to tell stories about ourselves – to understand our past and our future.