Dementia Japan37:54-60, 2023

Ethical issues relating to the disclosure of dementia biomarker test results

Eisuke Nakazawa

The University of Tokyo, Faculty of Medicine, Department of Biomedical Ethics

The disclosure of results from biomarker testing for dementia should be subject to consideration at the research, clinical, and public health phases, separately. At the research phase, it is crucial for the researcher, through intimate communication with the research participants, to consider the actionability of the test results. The participants’ right not to know the results is another ethical consideration characteristic of the research phase. For the clinical phase, informed consent should be obtained based on a comprehensive risk analysis that includes social and economic risks. Measures should be taken to avoid reducing risk-taking to mere self-responsibility, assuming that patients may not be able to make appropriate risk assessments due to cognitive biases such as incentive over-estimation. To this end, a relational interpretation of autonomy and the need for care and empowerment is crucial for the researcher to consider and communicate. For the public health phase, the issue of regulating direct consumer service must be addressed. The use of direct consumer services for social purposes beyond personal healthcare requires close consideration. This purpose should be disclosed to the public in an appropriate manner by combining the efforts of the academia.


Address correspondence to Dr. Eisuke Nakazawa, The University of Tokyo, Faculty of Medicine, Department of Biomedical Ethics(Hongo 7-3-1, Bunkyo-ku, Tokyo 113-0033, Japan)