Genetic Testing: Accounts of Autonomy, Responsibility, and Blame examines both the health advantages and ethical drawbacks of technical advancements in molecular genetics. Undoubtedly, these developments in the realm of genetic screening have provided a host of benefits to future consumers, such as the establishment of improved medical therapies, advancements in the classification of diseases, and major milestones in diagnostic methods. However, with the growth of genetic testing capabilities arise an intricate knot of ethical and moral dilemmas. Thus, this book explores the new landscape of ethical conduct – a landscape that was cultivated decades prior by these expansions in molecular genetics.
With these advances, the book details how legal, genetic, and psychiatric professionals have engaged in the reevaluation of genetic responsibility. Genetic Testing examines the methods in which testing of inherited risk urges new forms of social, individual, and professional accountability. Furthermore, it explores the notion of the multitudes of people who are ‘genetically responsible’ in terms of making ethical decisions in such cases.
An assortment of societal groups such as ‘at risk’ families, prospective consumers, the genetic industry, and the general public are now discussing and morally contemplating genetic testing. Some of the issues that are closely examined within this book include informed consent of minors, the assessment of competency, and the process of shared decision-making through disclosure and choice.
The authors introduce the topic of molecular genetics and ethics by reflecting on the social and historical events that essentially have laid the groundwork in an era of technical advancements, a free market, and current phenomena of broadened genetic responsibility. These historical events include the 1972 symposium on ‘Genetics, Man and Society’ and the edited collection of papers that developed as a result of this conference. New social movements developed to examine the ethical concerns that were produced as a result of genetic advancements; for example, informing relatives of actual versus potential risks and terminating pregnancies in which an embryo was deemed ‘defective.’ The devaluation of disabled lives is apparent in such discussions.
In their exploration of molecular genetics, the authors examine how genetic knowledge is engrossed within the socio-moral order of modern-day lives. This current phenomenon is described by the authors as a ‘contemporary liberal game,’ in which less governmental jurisdiction yet restricted individualized freedom makes it especially difficult to decipher what is ethically sound with regards to the proper usage of genetic information and, further, who is to be held accountable for genetic decision-making. A less restricted market, particularly in the genomics industry, alters the relationship of healthcare professionals and patients, and furthermore shifts the role of autonomy and responsibility from providers to consumers – which subsequently remaps the boarders of blame and responsibility.
Although a free market is allegedly designed to facilitate and encourage increased patient autonomy, conflicting versions of self-governance often emerge, including autonomy as a right to choose and autonomy as self-reliance. (The complications and challenges to autonomy as a fundamental ethical principle by disability scholars – and its replacement with an ethics of relationality – are particularly important considerations in such discussions, but are not discussed in this book.)
A prime example of the complications of this new provider and consumer shared decision-making is genetic counseling. In such a scenario, counselors may urge clients to reconsider personal values and decisions based on the ‘undesired outcomes’ and possible ‘life hardships’ that they assume are associated with disability. For instance, the authors discuss genetic counselors encouraging pregnant mothers to abort a fetus based on genetic testing results.
Neo-liberalism not only fosters a tangled provider and consumer relationship in terms of healthcare decision-making, it also increases the gaps between social classes. In fact, the authors emphasize this parallelism of eugenics and neo-liberalism in great detail. While eugenics justifies the ideology of ‘superior genes’ through the means of innovations in science, neo-liberalism implicitly suggests that such choices (if they were desired) are equally available to all through the free market. Of course, capacity to pay is foundational to all market transactions – new genetic testing is expensive, and information about personal genetics is often only available to wealthy people.
A rhetorical discourse analysis approach, reliant on intertextuality, explores the ways in which genetics is conveyed within contemporary society. This approach includes analyses of social interactions, texts on websites, and advertisements, as well as documentaries. The main focus is to highlight how the genomic industry represents genetic knowledge. This topic of public medication and communalization of genetics is extended when the authors discuss personal genomics and the media. Media portrayals of genetic testing as means to increase individualized biological potential versus the prevention of fatality are explored. Essentially, an array of media avenues – media commentary, client narratives, personal commentaries, and medical exposition – induces anxiety and creates health expectations to individuals. The UK-based genomics company GeneticHealth and the television series The Killer in Me are presented as examples of how the media encourages prospective consumers to thrive for personal genetic control and thus craft an ‘ideal, improved lifestyle.’
Another area of interest in this book is family communication of genetic risk; such communication is especially pertinent to dynamics such as the child’s autonomy, the responsibility of parents, and the allocation of blame within the family. Conducting interviews with families, the authors showcase the difficult balance they are often faced with: one in which families attempt to select decisions in accordance with their child’s possible (and yet unknown) future values. In addition, the conduct of these family interviews reveals how family members often indirectly blame one another in order to absolve themselves from the attachments of genetic blame.
Although the authors conducted exceptional research and, in addition, provided a clear account of how genetic knowledge operates through contemporary practices, one of the shortcomings of Genetic Testing is its readability. At times, the authors present medical jargon that perhaps is too technical for the non-medical professional. Also, the authors fail to incorporate intersectional analysis, particularly with regards to the ways in which race/class/gender interact with disability and influence genetic decisions and the presentation of genetic risks.
Department of Sociology and Anthropology, The University of Toledo, OH, USA
[email protected]
© 2014, Anna Neller
http://dx.doi.org/10.1080/09687599.2014.964509