Prof. Dr. phil., dipl. biol. Christoph Rehmann-Sutter

The lived genome and chronic inflammatory diseases. Integrating patients’ families’, doctors’ and scientists’ views on the significance of genetic susceptibility and individual risk loci for Crohn’s disease and ulcerative colitis. Ethical implications for informed consent to whole genome studies and individual clinical translation of research findings.

Crohn’s disease and ulcerative colitis are chronic inflammatory bowel diseases (IBD) that place a great burden on the everyday lives of those affected. In recent years, more and more genetic risk factors have been discovered. Some of the causes appear to be genetic. Before this, psychosomatic explanatory models and therapeutic approaches dominated, particularly in Germany. The project was about understanding how people with an inherited susceptibility to a certain disease - in this case Crohn or colitis - attribute meaning to genes, or what meanings they give them in everyday life.

A total of 31 patients with IBD aged between 16 and 65 and 11 relatives were interviewed in qualitative interviews. Questions included what it is like to live with IBD, how the disease affects life, social relationships, perception of one's own body and how genetic factors are incorporated cognitively and practically. We specifically asked what patients and their relatives understand by genes and what it means for them that their disease is now also explained genetically.

One group found the psychosomatic explanation rather annoying because it essentially blames those affected for the disease. According to the motto, if you treat yourself better, have less stress and eat the right things, you will stay healthy. They felt that was a burden or an overwhelm. The genetic explanation comes as a relief. In contrast, there was a second narrative pattern. People who attach great importance to having a certain amount of control over the disease viewed the psychosomatic explanation more positively. Because they can influence the way they suffer from the disease. For them, the genetic explanation is a bit of a competitor. They either did not consider the genetic explanation to be that important or rather rejected it. The research project is part of a larger context of understanding the genome beyond the biomedical view of genetic knowledge. For those affected, in addition to what is understood by the genome in biology, there is a second level of meaning of the genome, which encompasses the meaning of genetic information in the social life of those people who are specifically affected by it.

In addition, the project investigated the extent to which participatory online health networks (e.g. PatientsLikeMe) and the information from "direct-to-consumer" genetic testing providers (e.g. 23andMe) influence the processes of meaning generation of users with chronic inflammatory bowel disease. It emerged that such offers, despite sometimes significant data protection consequences, generate a new form of sociality for patients, which can ensure greater self-efficacy, particularly in the field of chronic intestinal diseases. In this context, self-efficacy is understood as the ability of patients to confidently handle genetic and microbiome information and to become both experience-based experimenters of their own bodies and advocates of their own health identity.

Funded by the DFG Cluster of Excellence “Inflammation at Interfaces” 2013-2016

Project team:

Prof. Dr. phil., dipl. biol. Christoph Rehmann-Sutter (PI)

Dr. phil. Dana Mahr (geb. Dominik Mahr), Assistant Professor (University of Geneva, then postdoctoral researcher University of Lübeck)