Socio-economics of Personalized Medicine in Asia by Shirley Sun (review)

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...