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Table 1 An overview of guidelines and recommendations on disclosure processes and genetic and non-genetic predictive testing

From: Addressing ethical challenges of disclosure in dementia prediction: limitations of current guidelines and suggestions to proceed

Guidelines/ Recommendations onCountries
The USCanadaGermany
 TypeContentTypeContentTypeContent
Disclosure of Dementia DiagnosisRecommendationsHow to disclose a diagnosis of dementia
Disclosing to the tested person and to the family member
Information on support, disease, treatment, care
Counseling as a multi-professional task
Recommendations [Guidelines]Disclosing to the tested person and to the family member
Information on support, disease, treatment, care
Diagnosis and management is the responsibility of primary health care
GuidelinesInformation on support, disease, treatment, care
Attention to the changing needs of the tested person and family caregivers
Counseling as a multi-professional task
Disclosure of MCI DiagnosisGuidelinesNo specific information
Importance of counseling (tested individuals and family) on lack of proven dietary or pharmacologic means, uncertainty of diagnosis, long-term planning
Recommendations [Guidelines]No specific information
Importance of counseling (tested individuals) on life planning and healthy lifestyle
Guidelines & RecommendationsNo specific information
Counseling with family members
Input by Stakeholders Conf. to improve guidelines [Counseling should be multidisciplinary]
Use of Biomarkers/Predictive Tests – Risk AssessmentGuidelinesNot recommended for clinical diagnosis
Individuals with MCI should be monitored
If person with MCI asks for risk assessment, physician can direct families and the person to research centers
Physician should inform the individuals on scientific limits of tests
Recommendations [Guidelines]Not recommended for clinical diagnosis
Individuals with MCI should be monitored
GuidelinesNot recommended for clinical diagnosis
If person with MCI asks for risk assessment, physician can direct families and the person to research centers
Physician should inform the individuals on scientific limits of tests, possibilities and treatment options
Handling of biomarkers is left to physicians
Predictive Testing (Genetic)Guidelines & RecommendationsNot recommended for asymptomatic individuals
Disclosing APOE: respect for privacy and confidentiality
Recommended for persons with family history & early onset symptoms
Disclosing to symptomatic individuals with a family member
Recommendations [Guidelines]Not recommended for asymptomatic individuals, but they can be directed to advocacy organizations
For asymptomatic individuals with family history cognitive assessment & regular follow-up should be indicated (Physician should direct the individuals to a genetic clinic)
Guidelines &
Recommendations
Not recommended for asymptomatic individuals & with subjective cognitive decline
Recommended for asymptomatic individuals with family history & early onset symptoms (Counseling required)
APOE is not recommended for late onset AD