A Review of the Book Future Perfect: Confronting Decisions about Genetics

Future Perfect: Confronting Decisions About Genetics (by Lorri B. Andrews, New York: Columbia University Press, 2001)

The genetic revolution begun in the 1950s with the discovery of the double-helical nature of the DNA molecule is hardly complete. In fact, many argue that we are still on the frontiers of this new territory. This new frontier has begun to look like California during the gold rush, with people running about trying to establish themselves before others get there. The biotechnology industry is certainly busy staking their claims on what they believe will be the biological gold mines of the future.

Mapping the terrain as we explore it is a critical enterprise for our future well-being as a culture. Through her books, The Clone Age (Henry Holt, 1999) and Body Bazaar (Crown, 2001), Lori Andrews, a law professor, ethicist, and frequent commentator, has been a helpful cartographer of our genetic future. In her most recent volume, Future Perfect: Confronting Decisions About Genetics, Andrews, who heads the Institute for Science, Law, and Technology at Chicago-Kent College of Law, takes up issues related to genetic testing, privacy, and services.

New genetic tests are being developed rapidly. With those tests comes an ever-growing ability to diagnose genetically-linked diseases. It is far from clear, however, that the ability to diagnose these conditions is an unadulterated good. For instance, diagnoses of disease genes for conditions for which there are presently no treatments or cures creates a new class of patients: the pre-symptomatic ill. What does it mean to know that one has the disease gene in one’s body, but has no symptoms (yet) of that disease? What are the psychological implications of this knowledge? What might be the legal and social implications of this knowledge? Would the pre-symptomatic ill fall victim to genetic discrimination by employers and health insurance companies?

“Genetic technologies raise issues that cut to the core of what it means to be human and what it means to be a just and fair society,” argues Andrews. Thus, she examines four competing frameworks for making genetic policy: (1) the medical model, (2) the public health model, and (3) the fundamental rights model. Her exploration of these various models provides not only a useful grid for thinking about policy, but raises very interesting examples of the ways that public policy might shape our genetic future.

An advocate of the fundamental rights model, Andrews maintains that voluntariness, informed consent, and quality assurance are best protected under that model. She also believes there is greater legal justification for the fundamental rights model. Although there is controversy over whether or not Andrews is correct, Future Perfect is a valuable resource in that it provides us with a set of benchmarks for discussion.

Since Andrews is absolutely right that “The policy model we choose will be the caretaker of our values as we decide upon the proper uses of genetic technologies,” it behooves legislators, policy shapers, activists, and others to read Andrews’ book and to enter the conversation about our genetic future. We fail to do so at our children’s and grandchildren’s peril.