Academic journal article
By Cahill, Lisa Sowle
The Hastings Center Report , Vol. 29, No. 2
The Geron Ethics Advisory Board bravely takes up the ethical big picture of genetic research: just distribution of burdens and benefits in a global market economy. Even granting that presenting new discoveries along with ethical caveats might be useful in deterring damaging public criticism, putting justice and access on the table, as Geron and its EAB have done, is valuable. It could help influence public perceptions and policy debates about new research in genetics that is fast outpacing extant moral and legislative controls.
The basic problem, however, is that just access to even one biotechnology is not something that Geron and its EAB can address or provide alone. At stake are questions of a very fundamental philosophical, cultural, and political nature that demand complex, intercultural reflection and action. To adequately address such questions clearly exceeds the expertise of the present writer. I shall, however, attempt to at least move toward greater specificity in understanding the daunting "challenge" to social ethics named by the Geron EAB. I will address three aspects of the ethics of research on biotechnologies, like stem cell research, that are driven by profits to be gained in a global context of vastly unequal access to health care and other human goods: the conceptual or philosophical definition of justice; the United States cultural context of debate about genetic justice, the market, and policy; and the practical political and structural conditions under which "global distribution of and access to" genetic therapies must be sought at the turn of this century.
What Is Justice?
Many North American bioethicists think of justice as one principle among four (justice, autonomy, beneficence, and nonmaleficence). This framework has stiffened the ethical backbone of debates about medical resources, both nationally and internationally. Many critics have observed that seemingly abstract principles need to be placed in the context of the communities that express and respect them.
The point that I want to make is somewhat different. The duties, values, or virtues indicated by the principles are interdependent rather than separate and competing, and it is possible to define justice as the category that comprehends the other three. In fact, the classical definition of justice as "giving each his or her due" implies a respect for the individual seen as part of a social whole within which benefits are to be shared and harms avoided. Thus autonomy and distributive justice should be treated together, as counterparts, and neither can be isolated from a consideration of what counts as a good for persons or society in the first place. If the right to freely choose cannot be separated from the effects of one's choice on the welfare of others, one must know what counts as a good or harm for others (or oneself), and one must, after all, be able to defend the proposition that free choice itself is a basic human good. Moreover, the nature of moral values, duties, and agency as interdependent and social implies that the community itself is an object of moral concern and analysis. The notion of justice as including and balancing both the good of individuals and the good of the community in which they associate can be referred to by the term "common good."
One of the conceptual and analytical difficulties we have in meeting the challenge of global justice is that we (in North America especially) tend to contrast autonomy or liberty and distributive justice as constituting different categories of obligation that are likely to be mutually incompatible. The EAB report, for instance, treats autonomy as expressing fairness and respect for persons, and holds that it is to be protected by informed consent. But although informed consent to experimentation on one's embryos is treated in relation to the intrinsic status of the embryo itself, there is little broader discussion of the way individual choice might be related to or responsible for the common good. …