Personal experiences of living with sucrose intolerance and attitudes towardsgenetic research in Greenland - a user study

There is high prevalence of the genetic SI variant c.273_274delAG in the sucrase-isomaltase-encoding gene in Greenland, resulting in congenital sucrase-isomaltase deficiency and therebyan inability to digest sucrose, the most common dietary sugar. There are no studies ofGreenlanders’ everyday experiences of sucrose intolerance related to this genetic variant. Thisstudy therefore explored, how Greenlandic people experience sucrose intolerance influences lifeand their attitudes towards research in health and genetics. The study is qualitative, using semi-structured focus groups and/or individual telephone interviews. The analysis was based on thephenomenological-hermeneutic approach of Paul Ricoeur, consisting naïve reading, structuralanalysis, interpretation and discussion. We identified two themes; “Sucrose intolerance impactsdaily living”, dealt with physical and emotional reactions and coping with social adaption toactivities. And “openness to participate in genetic and health research” were caused by partici-pants wanting more knowledge to improve their people and family’s life. The study concludedthat most of the participants with symptoms of sucrose intolerance experienced the impact intheir daily life, both physically, emotionally, and socially. Further, they expressed openness toparticipate in health and genetic research. There is a need for more accessible health knowledgeand support from health care to manage sucrose intolerance.