‘Geno-literacy': Issues of encoding and decoding of genetic information with regard to dementia risk

Background: With dementia diagnoses on the rise in most developed countries and massive investment into genetic research, challenges arise in terms of accessing, interpreting and using genetic risk information.

Aim: To examine determinants and challenges associated with ‘geno-literacy' defined as the process of communicating and understanding of genetic information with regard to ‘dementia risk' from the perspective of various stakeholders.

Methods: The multi-method study involved: (a) a structured scientific literature review (Medline, Cinahl, PsycInfo (years 2000-2009, limited to English language publications) (b) a thematic content analysis of major US newspapers (2005-2009), and (c) individual interviews with genetic researchers

Results: Genetic risks and knowledge affects virtually every life domain, including health, family planning, insurance, migration opportunities, social mobility and lifestyle. Scientific, public and familial discourses show both concordance and discordance in how genetic information is communicated. The encoding and decoding of genetic risk information is a dynamic interplay of stakeholder, information, content, communication media and setting characteristics. Health practitioners are confident at interpreting genetic risks correctly but see no value in sharing it with families if prevention is no option. Family members prefer to know about their risks but only if preventive action is a possibility. Genetic researchers mostly see benefits in identifying risks irrespective of current clinical potential.

Conclusions: ‘Geno-literacy' is not simply the product of acquiring, storing and expressing factual content but a process whereby individual stakeholder groups expose different motivational biases, affecting the use of genetic information. These determinants have to be understood in a wider socio-political context.