ABSTRACT
Research into the social aspects of genetics is dominated by a focus upon patients’ and their families’ perspectives and experiences. There exists a broad swathe of empirical evidence concerning the illness narratives and coping strategies of people affected by a wide variety of genetic disease. Researchers have looked at people’s experiences of late-onset disorders such as hereditary breast and ovarian cancer (Hallowell and Richards, 1997; Rothman, 1998; Finkler, 2000; Hallowell and Lawton, 2002) and Huntington’s disease (HD) (Cox and McKellin, 1999; Novas and Rose, 2000), and genetic diseases which affect people from birth, notably CF (Stockdale, 1999; Chapman, 2002; Lowton and Gabe, 2003), and Sickle-cell disease (Atkin et al., 1998). Other work on women’s experience of prenatal diagnosis (Rapp, 2000; Marteau and Dormandy, 2001) and preimplantation genetic diagnosis (Lavery et al., 2002; Franklin and Roberts, 2001) has provided a rich source of data on the ways in which genetic diseases impact upon people’s lives. A different, but related cadre of work comes from scholars in disability studies, who have drawn from their own experiences of what it is like to live with a genetic disease to present a more positive picture (Shakespeare, 1995; Parens and Asch, 2000), while at the same time criticizing their positioning as ‘patients’, because of its overtones of passivity and dependency.
