From chance to choice: genetics and justice Allan Buchanan, Dan W. Brock, Norman Daniels and Daniel Wikler Cambridge and New York: Cambridge University Press; 2000 398 pp. US$29.95 ISBN 0-521-66001-7
What are the most basic moral principles that would guide public policy and individual choice concerning the use of genetic interventions in a just and humane society in which the powers of genetic intervention are much more developed than they are today?
The authors of From Chance to Choice: Genetics and Justice take up this question armed with liberal theories of justice rather than the more familiar bioethical principles of autonomy, beneficence and nonmaleficence. Theirs is a highly articulate analysis of how liberal justice theories both clarify and are challenged by advances in genetic knowledge. Although far from light reading, this volume provides a concise yet thorough review of the history of eugenics, a moral analysis of the distinction between interventions to address disease and those that enhance normal qualities, as well as assessments of our duty to future generations, the right to reproductive freedom, the concerns of disability rights advocates and the role of the state in distributing the benefits of new technologies. In the discursive tradition of John Rawls' reflective equilibrium, the authors consider objections to the use of genetic technologies in their strongest articulation. Nonetheless, they are led to conclusions that would place few limitations on the application of new technologies.
A primary policy concern of the “genetic revolution” will be to allow fair access to genetic services and information, supporting wide reproductive freedom while respecting the best interest of future children and ensuring the equitable social distribution of the advantages of genetic interventions. Although Buchanan and his coauthors do not accept the objections of some disability rights activists to genetic testing and screening, they do recognize the danger of "backdoor eugenics" and suggest that "the most important policy objective … will be to ensure that maximum benefit is obtained while avoiding the exclusion and stigmatisation of any of our fellow citizens." But they also argue that the deep entrenchment of reproductive rights and social tolerance make a return to state-based eugenics highly unlikely, even without legal restrictions on individual choice.
The authors challenge value-neutral genetic counselling, recommending that counselling actively encourage the use of genetic services to avoid the conception or birth of children with serious genetic disease. They also argue that parents should have considerable discretion in utilizing genetic tests and interventions — including cloning — to enhance desired traits in their children.
Buchanan and colleagues make a case for public funding of genetic counselling and of access to enhancements if they are important for equal opportunity or competitive advantage. Justice related to genetics is best supported by a national health care system that provides access to services that are important to restoring people to normal functioning. This access must be provided in the context of social reforms that support the status of people with disabilities or genetic disadvantages as valued and equal members of the community. The authors worry that state-sponsored education programs that encourage genetic screening would risk a slide to a view of some people as less valuable than others. Instead, they support the reproductive freedom of parents to use or not to use genetic technologies and the avoidance of state action that could support unacceptable eugenic attitudes and effects. They argue that the tragedy and social cost of avoidable genetic problems are a reasonable price to pay for maintaining reproductive freedom and an ethic of inclusion.
This volume demands a response from those who claim that genetic prenatal testing implies a devaluing of disabled people. Similarly, those who wish to maintain a moral firebreak between genetic interventions that address disease and those that enhance normal human qualities must respond to the authors' dismantling of the moral relevance of that distinction.
In the authors' view, neither strong obligations to intervene on behalf of future children nor strong prohibitions and extensive regulations will be necessary once the limited effect of genetic knowledge is understood and fair access to health care is assured. Their well-argued and thorough analysis serves to demonstrate that genetic and genomic research presents less a revolution in values than another round of negotiating familiar themes of justice as it relates to health care, the value of the individual and the issues of distributive justice. Research into injustices that emerge in the application of genetic knowledge across different health care systems and societies might establish which are truly rooted in the new genetics, and which are more significantly the products of the social and political systems in which new technologies develop and are utilized.