When it runs in the family: putting susceptibility genes in perspective

Abstract

Using the genetics of late onset Alzheimer's disease (LOAD) as illustrative, this paper argues for a reflexive critique of the involved science, specifically in connection with estimations of increased risk. Following a review of social science commentary on genetic testing and screening in general, current scientific understanding about the molecular and population genetics of LOAD is then presented. The results of open-ended interviews conducted with first-degree relatives of individuals diagnosed with LOAD at two study sites follow. It is shown that the majority of people interviewed embrace the idea of complexity in connection with Alzheimer's disease causation and that many draw on a concept of “blended inheritance” with respect to the disease that “runs” in their family. It is argued that knowledge about risk obtained from genetic testing for LOAD rarely usurps other forms of understanding, but is nested by interviewees into previously held ideas about who in the family is most at risk for the disease.

Association Between Causal Beliefs and Shoe Wearing to Prevent Podoconiosis: A Baseline Study

“…Beliefs that diseases run "in the blood" or are inherited have been reported in diverse cultural settings for an array of disease conditions. [7][8][9] While in some cases, these conditions are indeed influenced by genetic susceptibility, low literacy and poor understanding of gene-environment interactions compounded with cultural beliefs can result in fatalistic perceptions that these conditions are unavoidable. Such beliefs may lead to stigma and diminish motivation to adopt risk-reducing behaviors.…”

Elusive Genes: Nuclear Test Veterans’ Experiences of Genetic Citizenship and Biomedical Refusal

“…Anthropologists studying genetics and genetic citizenship have often worked to ''dethrone'' the gene as a determinant of health and illness, outlining the range of social, cultural, and technological factors that complicate illness experiences and outcomes (Lippman 1992;Lock et al 2006;Lock 2009;Montoya 2011;Petryna 2002;Raspberry and Skinner 2007;Whitmarsh 2008). Anthropologists have explored how social groups engage with emerging genetic knowledge, charting patients' agency and resistance, and the competing explanatory frames that emerge from, for example, family relations, histories of racism, economic insecurity, gender dynamics, and religious beliefs (Lock 2008;Lock et al 2007;Rapp 1999).…”

“…Dealing with a highly complex and almost undetectable etiological process, they utilized narratives of luck to retrospectively make sense of a process that would likely never yield transparent knowledge (cf. Lock et al 2006). Luck is here ultimately used to expose the limits of scientific evidence.…”

Shaping the future and living in the present: Living a ‘good’ life with a familial heart disease

“…This implies that genetic tests do not 'represent' the future, and raises the question whether it is really possible to imagine future life in terms of genetic disease risks, to envisage how to live with the disease and to take decisions to protect future health on that basis. Empirical sociological research has explored how people deal with unclear, ambiguous test results (Zwieten van, 2008) or with new uncertainties and dilemmas, such as how to live with a positive genetic test result when nothing can be said about when and how the disease will manifest itself (Featherstone et al, 2006;Lock et al, 2006;Boenink, 2008;Lock, 2008;Geelen et al, 2011). Given the complex interplay between genes and the environment, as well as the involvement of many different genes, the quality of future life is difficult to predict with or without the disease.…”