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The greater the knowledge we have about who we are the more complicated the choices are. With increasing DNA information on the putative origin of certain pathologies, the labelling of the members of certain groups as 'defective' now seems to have some basis in science. It is clear that such labelling has had a very detrimental effect on individuals who are identified as having an illness or bearing the potential for it. Within families such information about real or future genetically transmitted diseases also has had a great impact. Using Fanconi anaemia as a case-study, Gilman examines how families no longer keep their illnesses 'private' but create 'extended families' of those who have, or have the potential for, the disease. Thus the patient collectives of the 1960s have, under the impact of increased genetic information, became extended families in the 1990s. This is related to the older tradition of 'Jewish diseases' to which Fanconi anaemia is now seen to belong.

Keywords: Fanconi anaemia; Jewish diseases; families; genetic cohorts; genetically transmitted disease

Document Type: Research Article

DOI: http://dx.doi.org/10.1080/003132202128811330

Affiliations: Liberal Arts and Medicine, University of Illinois, Chicago, USA

Publication date: January 1, 2002

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