Risky Relations: Family, Kinship and the New Genetics

by Katie Featherstone, Paul Atkinson, Aditya Bharadwaj

Increasingly more conditions are now being identified as having a genetic component, and controversial new genetic technologies potentially have major consequences for social relations and self-identity. How do family members respond to the information that they have a genetically transmitted disease or condition? How do they communicate (or not communicate) about their shared heritage? How do they decide who to tell and who not to tell within their family? Richly illustrated with the real experiences of individuals and families, Risky Relations is essential reading for anthropologists and sociologists of health and medicine, specialists in family and kinship, and health professionals concerned with the treatment and counselling of clients with genetic conditions. The lived impact of genetic technology on understanding within families with genetic conditions has never been systematically explored. This book fills a major gap by placing ethical, medical and social debates surrounding this charged issue firmly in context.

224 pages, Hardcover

First published November 1, 2005

Reviews

[Donna · Rating 4 out of 5]

A detailed ethnography of 41 individuals, representing 19 families, struggling with diagnoses of various inherited genetic diseases. I was especially interested in the many examples of verbatim conversations between the researchers and the individuals (mostly women), as this gave me a sense of how interviews might be conducted under such conditions. The authors show how families often have very different ideas about the origin of such diseases and how they are passed down; how their lives often become inundated with surveillance techniques – surveilling themselves for symptoms, mothers watching daughters and worried about their future, and daughters watching mothers and perhaps seeing their own future there. Who is told and who isn’t provides some surprising information, and is often in direct contradiction to what clinicians believe to be the case. For instance, family groups that aren’t in regular contact are often left out of the notification loop “because we don’t see them anymore”; elderly family members are often not told as no one wants to “upset them”; and, in the case of families where illnesses have occurred primarily in females there is a disingenuous notion that brothers and sons won’t be affected, even when genetic data proves differently. The authors conclude that clinicians should be offered anthropological training “in order to understand the awareness contexts and dynamics of family networks,” and to allow them “to engage with the shared and collective narratives of kinship, idioms of relatedness and interpretative frameworks that constitute the social world of the family” (p. 149). Very interesting and enlightening account.