Genetic Literacy and Citizenship: Possibilities for Deliberative Democratic Policymaking in Science and Medicine

The Human Genome Project and related genetic research have moved human biology and medicine to a new level. We now can identify genes (sections of the huge DNA molecule found curled in the nucleus of each cell of the body) associated with biochemical abnormalities that are in turn linked to symptomatic disease, dysfunction, and perhaps tendencies toward certain forms of behavior.¹ The mapping and sequencing of the human genome has already begun to transform the practice of medicine, and it promises to improve the health of individuals and societies around the world. It also threatens to create new forms of discrimination and domination both on a global level and within particular societies, including the United States.

Genetic science—and the technologies it spawns—are increasingly important forms of power and domains of public policy.² To be cut off from knowledge and information about the new genetics, and to be voiceless in the development of goals and regulations governing its use, is to be doubly disenfranchised. It is to be disenfranchised both in the political system in one's role as a democratic citizen, and in the health care system in one's role as a consumer of health care and a decisionmaker and partner in the physician-patient relationship.

This situation poses daunting challenges in America. Despite our enormous wealth, we have a highly stratified and unequal society.³ Despite our ethnic and cultural diversity, we continue to wrestle with racism and intolerance. Access to and utilization of the health care system is sporadic and limited for more than 50 million Americans. Furthermore, despite the remarkable achievements of our technical elites, we do a poor job overall in the area of basic science and health education. With the possible exception of computers, no area of science has received as much general publicity in the last ten years as genetics. So some level of familiarity with the subject is widespread; but most research has shown that understanding is limited to broad generalizations and images, and to be concentrated, when it exists at all, on particular diseases or disorders in one's own personal or family health experience.⁴

Critical Literacy

The challenges posed by the new genetics and biotechnology cannot be met without a greater investment in, and emphasis on, that aspect of broad health literacy that might be called "genetic literacy" and "genetic citizenship."⁵ These terms of art carry a special meaning. Literacy literally refers to the ability to read, and difficulty with reading and other linguistic barriers obviously hamper one's access to the information and understanding necessary for effective health decisions and health care. But just as the problem is broader than this, so too the concept of literacy involves more than the provision of information. Literacy, more broadly defined, means both the ability to understand one's needs and interests and the power to act to protect and promote those needs and interests. This is true of health literacy generally and for genetic literacy in particular. To be sure, our society is rapidly becoming increasingly demanding in the way it requires individuals to master specialized information and complex technical knowledge. Yet the acquisition of skills is a necessary but not a sufficient condition of genetic literacy. With genetic literacy, it does little good to equip people with functional skills in an unjust or coercive social milieu that makes it difficult to turn those skills into effective capacities and to engage in action that will promote and protect their health and other interests.

Hence, the critical function of the concept of literacy is not to identify flaws or shortcomings of particular individuals or of particular communities. Individuals and communities that currently lack effective literacy seek access to the skills and information necessary and will attain them if given an opportunity to do so. The critical function of the notion of genetic literacy is to focus on the context or the environment within which individuals and communities share information about genetics, try to understand the meaning of that information in their lives, and deliberate and debate with others how the...