The Alzheimer’s Foundation of America has warned of medical paternalism in a September 27, 2018 editorial comment in the Journal of Alzheimer’s Disease. Discussing the availability of at-home genetic tests that include screening for an individual’s APOE status (a gene that is correlated with susceptibility to late-onset Alzheimer’s disease, the authors recall previous debates over sharing medical information with individuals. The authors cite the examples of debates about sharing cancer diagnoses in the 1960s, HIV infection status in the 1990s and, more recently, the availability of direct-to-consumer genetic testing for Huntington’s disease. Of course, the examples of cancer and HIV involve disclosure of information relating to a manifest condition, whereas, in the case of Huntington’s, the condition may not yet be manifest and, in the case of APOE status, the information relates to risk rather than to a certainty.
The AFA acknowledges that “the patient role is now understood as appropriately primary and autonomous”. So the issue is not whether consumers should receive this information, but how to optimize the individual and societal benefits. The AFA outline three worthy goals:
- Educate consumers on the meaning of genetic tests, including other genetic factors
- Mitigate the negative consequences for people learning information about themselves (e.g. discrimination)
- Capitalize on the testing by using information at the individual-level and population-level to inform strategies to lower the overall risk
The AFA suggests that “developing and standardizing systems for information and resource management across the industry should start now, with the input of consumers and experts in genetic risk and health information disclosure.”