Preventing Intellectual Disability: Ethical and Clinical Issues

The book Preventing Intellectual Disability broadly examines the implications of modern medical techniques for the prevention of intellectual disability. In Western societies in the early 21st century, this primarily involves the prenatal identification, through genetic testing or other means, of affected—or potentially affected—fetuses and subsequent selective abortion. Pekka Louhiala, a pediatrician and trained philosopher, considers the important ethical questions arising from the expanding availability and modern-day use of such technology. In doing so, he employs selected discussion of clinical and epidemiological literature, reflection upon important historical considerations, and extensive philosophical dissection of the various assumptions and justifications related to the use of these techniques.

The book begins with a presentation of four case scenarios. Each highlights different aspects of the complex issues arising from efforts to prevent intellectual disability. From there, a series of chapters covers the topics of the definition of intellectual disability, the epidemiology of intellectual disability, general issues in the prevention of intellectual disability, prenatal diagnosis and screening, and genetic counseling. These chapters set the groundwork for the following two chapters, which are to some degree less didactic in nature; rather, they focus much more on philosophical discussion.

First, the question of why intellectual disability should be prevented is considered, and the author critiques a handful of the major arguments in favor of prevention. Arguments include those made with eugenic goals—such as goals aimed at removing "abnormal" genes from the human genome—those asserting the medical abortion of such fetuses to be an extension of Nature's own proclivity to abort fetuses with congenital aberrations, which is termed "fetal-wastage" in this text. Other major arguments are those considering the burdens—primarily the economic ones, which are the easiest to quantify—borne by both families and society as a result of intellectual disability, and those considering the quality of life of intellectually disabled individuals.

The next chapter deals with the issue of the "moral status" of people with intellectual disabilities. Moral status is defined as "a means of specifying those entities towards which we believe ourselves to have moral obligations" ( 1 ). In this chapter, the author highlights the how the ethical implications of preventive efforts are affected by the degree to which intellectually disabled individuals are considered to have moral status that is equivalent to that of the unimpaired.

Finally, in the concluding two chapters, the ethical principles developed in the preceding chapters are applied. First, the author considers them in the context of three diagnoses associated with intellectual disability: Down syndrome, fragile X syndrome, and aspartylglucosaminuria, an autosomal recessive lysosomal storage disease that is most common in Finland. Second, the author returns to the four cases presented at the beginning of the book, utilizing them to highlight the most salient points and his conclusions.

The book reads as more of an ethical and philosophical discussion than as a medical text or reference book. Overall, I found it to be very readable and thought provoking. The author does an exceptional job of breaking down and defining concepts as they come up, which made it feel quite accessible to someone with a medical and clinical, rather than philosophical, background. In addition to people who work primarily with people with intellectual disabilities, this book would likely be of interest to those who work in child mental health.