Most online tests for Alzheimer’s disease are unreliable and unethical, a panel of experts says.
“As many as 80 percent of Internet users, including a growing proportion of older adults, seek health information and diagnoses online,” Julie Robillard, a postdoctoral fellow at the National Core for Neuroethics at the University of British Columbia in Canada, said in an Alzheimer’s Association news release.
“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,” Robillard said.
“However,” she added, “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.”
The panel reviewed 16 freely accessible online tests for Alzheimer’s disease on websites that receive anywhere from 800 to 8.8 million visitors a month. Twelve of the 16 tests were rated poor or very poor for overall scientific validity and reliability.
This means the tests “are not useful for the diagnosis of Alzheimer’s disease,” Robillard said.
All 16 tests were rated poor or very poor on ethical standards. Problems included overly complicated or no confidentiality and privacy policies, failure to reveal 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.
The findings were scheduled for presentation Monday at the Alzheimer’s Association International Conference, in Boston.
“Freely accessible diagnostic tests that lack scientific validity and conform poorly to guidelines around consent, conflict of interest and other ethical considerations have the potential to harm a vulnerable population and negatively impact their health,” Robillard said. “Further evidence and informed policy are needed to promote the greatest benefits from tools and information available on the Internet.”
Because this study was presented at a medical meeting, the data and conclusions should be viewed as preliminary until published in a peer-reviewed journal.
Source: Alzheimer’s Association