Table 2.

Disclosure of genetic risk factors for AD to cognitively healthy individuals—key messages and future perspectives.

Topic	Key Word	Key Message
Genetic risk communication	Counselling	Risk communication should be included in an integrated genetic counselling and testing procedure.
	Practice	Currently, testing genetic risk factors is not recommended in clinical practice.
	Research	In clinical research, risk disclosure should be embedded in the relevant research protocol.
	Patient-centredness	User-centred procedures are warranted.
	Personalised risk	The genetic risk should be interpreted and disclosed to the participant as part of a comprehensive individual risk for dementia.
Guidance	Guidelines	Evidence-based guidelines are warranted and should be developed by independent experts from across a range of health and social care professions, including lay members.
	Inclusiveness	All relevant stakeholders should be allowed to appraise the implications—or the risks and benefits—of disclosing genetic risk factors to healthy individuals.
	Innovation	Novel technologies should be timely evaluated by using structured assessment procedures (HTA).
Protocol	Setting	Users would prefer face-to-face services rather than remote consultations, as genetic testing is perceived as an option to gain knowledge on one’s own health; users rely on the presence of expert healthcare professionals.
	Multidisciplinarity	A multidisciplinary team should be in charge of the whole process of genetic risk assessment and disclosure.
.	Quality	The procedure should comply with acknowledged quality standards; proper resources should be allocated, also in clinical research protocols.
Education	Health education	Educational strategies for the public may improve genomic literacy and increase abilities to make appropriate health decisions.
	Medical education	Continuing education programmes for healthcare professionals about the clinical utility of genomic technologies are warranted.
	Interdisciplinarity	Multidisciplinary and multi-professional teams may guarantee the ability to deal with the multifaceted issues implied by genetic risk disclosure.
Health value	Autonomy	Enrolled individuals should be able to autonomously decide whether to know or not to know her/his genetic risk; the uncertainty related to the limited predictive value of currently available genotyping should be considered.
	Technology assessment	Structured assessments should be deployed to evaluate all domains of the genetic risk assessment and disclosure procedure—safety, effectiveness, economic and organizational issues, ethical, legal and social issues.
Perspectives	Evidence	Further research is needed—investigations featured by rigorous design and controlled risk of bias will contribute to accumulate knowledge; novel research questions may be considered.
	Equity	Research protocols should be equally accessible, including minority and less affluent individuals, and should be conducted in diverse cultural and national contexts.
	Engagement	The proactive attitude of the clinical and research communities will help closing the gap between expectations and practice; users and other relevant stakeholders may contribute to the development of appropriate pathways.