Addressing ethical challenges of disclosure in dementia prediction: limitations of current guidelines and suggestions to proceed.
Zümrüt Alpinar-SencanSilke SchicktanzPublished in: BMC medical ethics (2020)
This paper underlines the need to develop empirically based guidelines that address the ethical and social strategies for risk communication of dementia prediction by genetic as well as non-genetic biomarkers. According to our analysis, the guidelines do not address the new developments sufficiently. International efforts should aim for specific guidelines on counseling, communicating risk and disclosing results. We argue that guidelines on (risk) disclosure should be developed by involving various stakeholders and should be informed by socio-empirical studies involving laypersons' needs and wishes regarding risk communication.