Most Online Tests For Alzheimer’s Disease Fail On Scientific Validity, Reliability And Ethical Factors

An expert panel found that 16 freely accessible online tests for Alzheimer’s disease scored poorly on scales of overall scientific validity, reliability and ethical factors, according to new data reported at the Alzheimer’s Association International Conference® 2013 (AAIC® 2013) in Boston. “As many as 80 percent of Internet users, including a growing proportion of older adults, seek health information and diagnoses online,” said Julie Robillard, Ph.D., a postdoctoral fellow at the National Core for Neuroethics at the University of British Columbia in Vancouver, British Columbia, Canada, who presented the data at AAIC 2013. “Self-diagnosis behavior in particular is increasingly popular online, and freely accessible quizzes that call themselves ‘tests’ for Alzheimer’s are available on the Internet. However, little is known about the scientific validity and reliability of these offerings and ethics-related factors including research and commercial conflict of interest, confidentiality and consent. Frankly, what we found online was distressing and potentially harmful,” Robillard added. According to the Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures report, more than five million Americans are living with Alzheimer’s disease. By 2050, the number of people with Alzheimer’s could reach 13.8 million. Other estimates suggest that number could be high as 16 million. “The number of people with Alzheimer’s is projected to rise significantly as more and more people age into greater risk for developing the disease,” said Maria Carrillo, Ph.D., Alzheimer’s Association vice president of medical and scientific Relations. “Especially in that context, active promotion of healthy aging is a priority for the Alzheimer’s Association, as is the delivery of accurate, reliable and ethical information and services.” All 16 tests scored “poor” or “very poor” on the evaluation criteria for ethical factors. According to Robillard, ethical issues with the tests included overly dense or absent confidentiality and privacy policies, failure to disclose commercial conflicts of interests, failure to meet the stated scope of the test and failure to word the test outcomes in an appropriate and ethical manner.