Don’t let the awkward title of this book put you off. This is a book about an important set of issues that goes beyond the keywords flagged in the title to address the contradictions of biomedical meanings of race and population, as well as concerns over the clinical efficacy of genetic testing. It is among the very first books to look at the intersection of these issues using primarily Asian case studies and expert interviews, many of them carried out in Singapore, where the author is based.
Sun’s starting point is the “palpable tension” (2) between the proliferation of claims made for the potential value of personalized medicine (usually taken to mean bespoke medical treatment designed for an individual genetic map) and large-scale studies that are based on identifying medically significant genetic variations across populations defined by ethnic and racial categories (e.g., one of every thirteen African American babies is born with sickle cell trait). From the standpoint of drug companies, this moment marks a turning away from the search for blockbuster drugs, such as penicillin, that can treat everyone suffering from the same illness to what might be called a narrow-cast approach that seeks to produce medicines targeted at affected populations defined around common genetic traits.
The genetic turn in drug discovery and treatment manifests in two broad ways: in predicting how people with particular genes and their mutations or who are missing them are likely to respond to particular drugs and identifying “ethnic” drugs. Knowing that patients will not respond to or will react negatively to a drug because of their genetic makeup is obviously very useful for reasons of both treatment and cost; hence, this is a clearly positive outcome of the genetic turn. Ethnic drugs are drugs targeted at populations defined in racial or ethnic terms because these populations are found to be statistically more likely to suffer from a particular ailment. For instance, knowing that African Americans show a higher proportion of sickle cell traits than other ethnic communities in the United States, physicians habitually consider the implications of that possibility in their diagnosis and treatment of patients identified as African American, even if the ailment in question is unrelated. In other words, ethnic drugs begin from a statistical condition and go on to identify a target population defined in ethnic or racial terms. The latter part of Sun’s book recounts the author’s interviews with clinical specialists and cancer researchers who identify a number of concerns with genetic testing from medical, ethical, and social standpoints.
The question that is of greatest concern to Sun is why biomedical populations continue to be defined in ethnic and racial terms when it is well established (in the social sciences and humanities, at least) that race and ethnicity are socially constructed categories with no genetic basis whatsoever. Indeed, as she reminds us, the Human Genome Project showed that 99.9 percent of our genes are shared by the entire human race (1). She provides a number of answers to this question, including the power of existing categories (e.g., Singapore data is broken down by race; US studies are required to be sorted by ethnicity), drug companies’ efforts to recoup costs of drugs by targeting ethnic communities, and most troubling of all, a continuing belief among some scientists that “ethnicity has a genetic basis” (35).
If race and ethnicity constitute one major axis of discussion and critique in this book, another is Asia. The second chapter discusses the rise of pan-Asia research collaborations, notably the Pan-Asian SNP Consortium (a subset of the Human Genome Organization), which includes ten Asian countries. The origins of this consortium are based in the “dissatisfaction of Asian researchers” (31) with prevailing definitions of Asia and international. Not only was the claim of international applied too loosely to what were essentially Euro-American projects, they argued, but also Asia all too often was taken to consist solely of Chinese and Japanese DNA samples and scientists. Asian scientific dissatisfaction is deeply reminiscent of efforts made in the early and mid-twentieth century to identify a culturally resurgent Asia defined in opposition to a decadent West, by Chinese, Japanese, and Indian intellectuals in particular (Duara 2010). If in the past civilizational difference was defined in oppositional terms, such as Asia’s alleged nonmaterialistic and spiritual orientation, today’s consortium scientists look to distinct practices to mark Asian difference. Notably, to compensate for considerable inequalities in scientific endowments among Asian countries, the consortium chose to describe scientific collaboration in terms of hosts and guests as a way of finessing the substantial unevenness across national scientific communities.
Asia is the subject of the third chapter as well, dealing with pharmaceutical companies and their efforts to minimize potential losses when faced with a drug that does not perform as well as hoped. Using the case study of the lung cancer drug Iressa (gefitinib), the chapter describes how a genetic mutation in an epidermal growth factor receptor (EGFR) protein became a proxy for an Asian population, allowing the drug company AstraZeneca to claim that it had discovered a treatment for a certain kind of lung cancer more likely to be found among “Asians.” Although the drug works equally well with all subjects who have this mutation, Asians (30–40 percent) are more likely to carry it than Europeans (10–15 percent). The company jumped at this statistical difference and touted the drug as particularly effective for Asians, allowing AstraZeneca to recoup more of its investment than would have been possible otherwise while also claiming one of the first commercial successes for “personalized” medicine. Using Asia as a mark of either distinction or celebration (as a growing market) is not restricted to self-serving drug companies. Some Asian scientists want to see their countries included in large-scale clinical trials for reasons of national pride. Others turn the results of studies involving Asian patients to their professional advantage by creating academic niches for themselves based on the populations they collect data from. The bottom line, Sun reaffirms, is that although it now appears that Asia/n is a meaningful category in medical trials and studies, the category remains empirically vacuous and is created entirely through multiple acts of omission and commission.
The last chapters of the book report on the results of extensive interviews with practicing oncologists and clinical specialists. In trying to understand how the genetic turn has affected their work, Sun finds that many physicians are skeptical about the value of genetic testing. In some cases, she finds that having data about a patient’s genetic makeup can reduce diagnostic time and effort but offers no guarantees for overcoming illness or disease. What is of greater concern for some specialists are the ways in which genetic data is coming to be used for medical triage in public health care systems. A variety of ethical conundrums are described, including physicians’ dilemmas over whether to prescribe expensive tests and new drugs for low-income patients and the problems of offering families impossible choices, such as whether to keep loved ones alive at very high expense when the extension of life is likely to be short-lived. Additional issues that emerge in the clinical encounter include how to cope with probabilities, for example, the statistical possibility of contracting diseases such as breast cancer, based on genetic testing and what to tell a patient when new and unexpected risk factors emerge as a result of tests looking for another genetic marker. The problem of ethnic stigma is also a factor when certain communities are overrepresented in population studies: it could easily lead to the risk of insurance redlining and discrimination.
There is no question that this book deals with a number of very important issues, for both scholarly and policy communities. It points to a number of new areas where more research is needed and asks questions that will be with us for some time. However, because at least two related but different concerns are entangled throughout, and because of the book’s organization, it also can be a difficult book to read. Is this book about debunking the hype around personalized medicine, or is it about the biomedical reification of the category “Asia”? The author would probably say both, but in the process, neither is fully worked through. The last few chapters, on the clinical encounter, are interesting to read and show that personalized medicine in practice offers far less than the hype built around it. The problem is that the social and ethical concerns that interview subjects raise are all too familiar; at best, some novelty comes from ethical concerns being extended to a new register. We learn something about the limits of genetic testing but mostly find a reaffirmation of the structural and ideological limits to public health funding in an era of neoliberal state irresponsibility. Regarding Asia, while Sun repeatedly makes it clear that race is not a genotype, while she shows that cultural essentialisms are rampant in the turn to personalized medicine, while she demonstrates that more than one stakeholder has an investment in making the claim that Asians are different, we never find out how it is possible for geneticists to believe that ethnicity has a genetic basis.