chapter  4
Dilemmas of a “General” Genetic Disorder Control Policy
Pages 19

Between the suffering of a victim of a genetic disorder and the impassioned rhetoric on the floor of Congress, there stands a large faceless buffer, distiller, interpreter, and reasoned constructor of genetic disorder policy: the state health bureaucracy. It is easy and comforting to make the mistake of thinking that bureaucracy is something that happens over there, in another building, to government employees in Washington, or in the state capitols. In fact, bureaucracy everywhere touches and often deeply infuses our lives. If by chance we don’t work in one, we have to work around or through such an organization almost daily. It has led one commentator to prophesize the bureaucratization of the world (Jacoby, 1973), a contemporary update to the gloomy futurism of Max Weber. But if it is a mistake to divide people into bureaucrats and nonbureaucrats, it makes a lot of sense to divide the institutions that envelop us into bureaucratic and nonbureaucratic. For example, the family is an institution, but few families take it as their central task to treat everybody with whom they come in contact with neutrality and dispassionate detachment. Families, to the contrary, divide people into friends-of-the-family and enemies or strangers, and the rules of behavior bend and shift accordingly.