Genetic testing for Alzheimer's disease: trends, challenges and ethical considerations.

Rentería ME1,2,3, Mitchell BL1,2,4,3, Manrique de Lara A5,3.

Author information

1: QIMR Berghofer Medical Research Institute, Brisbane.
2: School of Biomedical Sciences, Faculty of Health.
3: All the authors contributed equally to the article.
4: Institute of Health and Biomedical Innovation, Queensland University of Technology, Brisbane, QLD, Australia.
5: Bioethics, Health and Law Diploma Program, Instituto de Investigaciones Jurídicas, Universidad Nacional Autónoma de México, Mexico City, Mexico.

Abstract

PURPOSE OF REVIEW:

Advances in personal genomics have made predictive genetic testing increasingly popular. The purpose of this review is to examine and summarize recent literature regarding the ethical concerns and considerations surrounding genetic testing for Alzheimer's disease.

RECENT FINDINGS:

Four basic bioethical principles can be applied in the context of genetic testing: autonomy, nonmaleficence, beneficence and justice. The concepts of clinical validity, clinical utility and personal utility are also necessary for the ethical deliberation of genetic testing for Alzheimer's disease. Ethical considerations can differ among three distinct settings present in the literature: research, clinical and direct-to-consumer services. Studies have found that the negative psychosocial impact of genetic test results on the individual is limited, but emphasize the importance of pre/posttesting genetic counselling.

SUMMARY:

The literature should ideally inform policy-making around genetic testing. There exists an urgent need for regulation, particularly in the direct-to-consumer market, since interest for testing in this context is rapidly growing. Standardized protocols for disclosure should be developed, and there is a need to find ways to meet the growing need for genetic counselling. Importantly, comprehensive, evidence-based regulation requires that research be conducted in different contexts with more diverse participants.