Genetic research & communal narratives.

The risks and benefits of genetic research extend beyond individual subjects. Genetic research can also affect the communities to which the subjects belong, by rewriting the narratives and reconfiguring the identities that members of the community share and live by. These far-ranging effects raise special concerns for obtaining informed consent, for which there is no simple solution. Scholars and laypeople alike are fascinated by the study of people's origins. (1) Are today's Cohanim--Jews who identify themselves as descendants of the hereditary priesthood of Biblical times--really the genetic descendants of those early priests? Did all "indigenous" North Americans journey across the Bering Straits, and if so, when? Just as individuals "seeking their roots" have made family genealogy into a national craze, scholars have turned their attention to the family histories of ethnic and linguistic groups. Tudor Parfitt points out that the groups most likely to search for and invoke genetic evidence of their beginnings are those whose origins are somewhat ambiguous, and that societies whose ethnic borders are least crisp are the most likely to be fascinated with the search for "who they are. " He claims, "The whole late twentieth century obsession with 'roots' was fomented in the all-too-reducible American melting pot. " (2) One difference, however, is that Aunt Mabel is usually interested in researching only her own family tree, while scholars often train their spotlights on groups of which they are not members. Genetic research, and the increasing prominence of genetics in medicine and science, poses special problems for the ethics of research with human subjects. Genetics is basically about inheritance in families and larger groupings of people. Most commonly it is ethnic groups that are the object of research. However, groups defined by geography or political history can also have communal stakes in how genetic research is conceived, carried out, and described to the public) All this makes the implications of genetic research for communities or groups ever more important. (4) Traditionally, informed consent to research has been an individualized process carried out by a researcher and a single subject. If a protocol requires a thousand recruits, consent is still seen as a thousand individual interactions. Some scholars have argued that genetic research is different, however, because the risks and benefits go well beyond the individuals who actually agree to take part, and devolve instead upon the group as a whole) Some commentators claim that group consultation, or even group consent, is a requirement of ethically acceptable population-based genetic research conducted on identifiable groups. (6) One potential harm or benefit of genetic research is that it can either undermine or corroborate the group's creation story or communal narrative. The group or groups whose interests are at stake probably do not speak with one voice, however, and different subgroups may be differently placed with respect to the narrative; a creation story that is a source of power for one subgroup may serve to marginalize another subgroup. Given the melange of communities--and groups within the communities--a "community" decision whether or not to consent to the research is not always an effective approach to guarding the rights of research subjects. What Genetics Research Can Show Genetic researchers often focus on groups because certain genetic traits can be concentrated in groups of people who descended from a small number of common ancestors, especially if those people were also geographically or socially isolated, and if they favored marriage within the group. Even when a group has no higher incidence of a particular trait than the general population, it is easier to see genetic patterns that are associated with that trait if other genetic factors are more homogenous, If you are trying to figure out if there are any outward physical markers for schizophrenia, for example, possible patterns of congruence will stand out more sharply in a genetically homogenous group than in a highly diverse one. …