Negotiating Risk: British Pakistani Experiences of Genetics (review)

Against a backdrop of interpolated public debate on health risks and, specifically, cousin marriages among an ethnic minority in the United Kingdom, Alison Shaw has brought forth a book that tackles the issue from a less socially and politically charged perspective than the media and politicians convey. In fact, her aim is to “fill the gap” in the portrayal of the issue by providing an insider’s perspective. How do people within the British Pakistani population in the United Kingdom perceive the risks of the centuries-old cultural practice of consanguineous marriage? How do individuals feel when an accepted cultural norm suddenly seems so “wrong” in the eyes of the general public? And how meaningful is this genetic risk for an individual’s reproductive decision making?

Shaw begins by contextualizing risk and genetics. From a biological anthropologist’s perspective, it is particularly interesting that she discusses risk perception itself as a cultural or moral trait that binds groups. Ideas of risk serve to differentiate groups, be they at a smaller level (say, those who smoke versus those who don’t) or at a larger level (say, those who marry cousins versus those who don’t). In the latter case, it is ethnic minorities such as British Pakistanis in the United Kingdom who are likely to feel discriminated against by this distinction. Hence for medical counselors or for that matter evolutionary biologists who wish to talk about risk without any moral implications, it might be a bit like walking on eggshells.

As for genetics, it is a relatively new thing that we can truly appreciate and especially identify risks associated with mutations. Therefore and in this context it is a “creation of modern knowledge.” Coupled with the fact that genes and mutations cannot be observed, genetic risks are less permeable to the lay public in general. Genetic terminology is obscure for most and difficult to translate into non-Western languages. But the confusion is not limited to nonscientists. Surprisingly, and as I experienced recently while traveling, even some Western academics working in such fields as nuclear energy and engineering might sometimes associate genetics with genetic modification and “tinkering with nature.” For those more familiar with genetics, there is an additional twist to the story. There is, from an evolutionary perspective, a slight problem with the predominating view that mutations and their associated changes in the phenotype are pathological. It brings to mind the debate concerning Homo floresiensis’s small brain and whether it is a pathological condition or simply the result of evolutionary change. Does a different phenotype become acceptable only when a majority of a population shares the trait? That is not to say that mutations leading to developmental complications, learning disabilities, or any form of physical and psychological suffering are not to be addressed, but just to say that we have indeed a short-term view of mutation and normality. Shaw briefly touches on the topic by stating that the “dominant recent Western biomedical view of birth and developmental problems is that they represent ‘errors of nature,’” but she does not delve any further into the understanding of genetic change from the scientific perspective.

Shaw’s first chapter is concerned with the public and medical views of consanguineous marriage. She highlights the problem with the way the media—and politicians—have depicted the risks of cousin marriages, placing them side by side with such health issues as smoking and excessive drinking, which result in costs on the health care system and thereby on taxpayers in the United Kingdom. The difference is that in this case an ethnic minority is singled out and brought into the limelight as a transgressor of rational and moral norms. From this perspective it is also easier to understand why a minority should show reluctance in assimilating judgments when they come from an ethnic majority. Hence the perception from medical professionals is that British Pakistanis are in “self-denial” regarding the risks of cousin marriages.

In the scientific community there is...