Towards an Ethics of ‘Complexity’ for ‘Common’ Diseases?

Abstract

Human genetics is not just personal but familial, social and universal. It affects whole populations as well as future generations. It has its own myths, its own meanings, its own imagery. No longer limited to finding specific genes for single gene disorders, it is increasingly becoming the human genetics of common diseases, the latter described in the terminology of risk, susceptibility, probability, and predisposition. Besides individuals and families, these genetic factors found in common diseases concern communities, that is, populations or subpopulations of persons around the world regrouped “genetically” by disease, ethnic origin, race, gender, age, or region. Indeed, genetic families once limited to genealogies and pedigree studies for single gene diseases will gradually be replaced by new “families” whose membership resides in their at-risk status for common diseases such as breast cancer or heart disease. Moreover, although many factors contribute to these common diseases, genetic factors could be the unifying link in these new extended families. Do we simply multiply the ethical, legal and social issues already known to affect individuals and then factor in this new information? Or does genetics in collectivities, in these communities, in these populations, raise different questions and concerns requiring a different ethic-a complex ethic or an ethics of complexity for common diseases (for references, see Roy et al. 1995)?