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To the Healthcare Community:
Alzheimer’s Mirror™ is a unique, comprehensive service that helps individuals understand their risk of developing late onset Alzheimer’s. In addition to a genetic test for APOE status, Alzheimer’s Mirror™ provides consultations with a genetic counselor, educational information and ongoing support to help individuals evaluate their risk and plan accordingly.
Research Behind Alzheimer’s Mirror™
MIRAGE
The Multi-Institutional Research in Alzheimer's Genetic Epidemiology (MIRAGE) study has been funded by the National Institute of Aging (NIA) since 1990 and demonstrated that genetic factors play a major role in the development of Alzheimer’s disease. Its research has identified the APOE ε4 allele as the strongest genetic risk factor.
- APOE ε4 allele to be the strongest identifiable risk factor for developing Alzheimer's disease.
- Depression early in life is also a risk factor for developing Alzheimer’s disease
- Statin medications may reduce the risk of developing Alzheimer’s disease
- Ethnicity may play a role in susceptibility to Alzheimer’s disease
MIRAGE continues to evaluate genetic and non-genetic risk factors for Alzheimer’s disease. There is a particular emphasis on exploring whether risk factors for vascular disease are also contributing risk factors for AD. It is hoped that by obtaining neuroimaging data from 1000 families, these associations can be better understood.
REVEAL
The Risk Evaluation and Education for Alzheimer’s Disease (REVEAL) study is a clinical trial funded by the National Human Genome Research Institute (NHGRI), and the National Institute on Aging (NIA) based at Boston University’s School of Medicine. The goal of REVEAL is to provide healthy adults with genetic susceptibility testing and information about their chances of developing Alzheimer's disease. Participants in REVEAL were pre-screened for psychological problems and early signs of Alzheimer's disease.
REVEAL was designed to measure:
- Who seeks genetic counseling and why
- How APOE disclosure affects risk perceptions
- The psychological impact of genetic risk assessment
- How risk information affects participants’ subsequent health and insurance behaviors.
Findings include:
- Disclosing APOE status and its association with Alzheimer’s risk to participants did not result in a significant increase in distress or depression.
- Participants who discovered they had the high risk APOE e4 allele proved more likely to be proactive in changing their lifestyles and planning for long term care.
- A majority of participants reported that REVEAL had made a positive impact on their lives (67% positive vs. 17% negative).
- Participants were more likely to report lower, rather than higher, anxiety about Alzheimer’s disease as a result of being tested (43% lower vs. 11% higher)
Ethical, Legal and Social Issues (ELSI)
Various members of the medical community have raised concerns about the appropriateness of Alzheimer’s risk assessment based on APOE. They have recommended against APOE testing, arguing that:
- There is presently no known cure for Alzheimer’s disease, and no medically proven method for preventing or decreasing the risk of the disease.
- APOE testing does not definitively predict Alzheimer’s disease; it merely establishes the presence of a risk.
- Knowing that one is at a genetic risk for Alzheimer’s disease could result in unnecessary anxiety.
- Employers or health insurance companies might begin to discriminate on the basis of genetic testing.
To weigh these arguments , research studies have evaluated the potential benefits and risks of genetic risk assessment. The REVEAL Study (Risk Evaluation and Education for Alzheimer’s Disease) is the first multi-center trial designed to evaluate the impact of Alzheimer’s genetic risk testing on healthy adults. The study found that, in a pre-screened population, even though there is no known cure or doctor-recommended preventative for Alzheimer’s disease, many individuals were interested in genetic risk assessment for family, financial, and emotional reasons. The findings suggest that Alzheimer’s genetic risk assessment is not only safe but beneficial to the people involved.
Smart Genetics is committed to understanding the ethical, legal and social issues of Alzheimer’s genetic risk assessment. We believe that offering a confidential service with meaningful education, screening and genetic counseling provides safe and helpful genetic risk assessment for Alzheimer’s disease . We hope that the launch of Alzheimer’s Mirror will stimulate active discussion among consumers and members of the Alzheimer’s disease advocacy, medical and patient communities. Ultimately , we believe that our customers will benefit from this dialogue.