05.2020 | THE SCIENTIST 55ted, stored, and analyzed, making the
privacy of participating users an obvi-
ous concern. There are some regula-
tions protecting consumer data, such as
the General Data Protection Regulation
in the European Union, which requires
companies storing data over long peri-
ods to implement the “right of erasure,”
allowing participants to delete their per-
sonal data. Several US states, includ-
ing California, Massachusetts, and
New York, have data privacy laws, and
the US Health Insurance Portability
and Accountability Act of 1996 (HIPAA)
led to federal standards to protect health
information in electronic form.
For studies such as the one by Evida-
tion and collaborators, this could mean set-
ting up the personal devices in such a way
as to limit the data sent to the computing
facility. Another solution could be setting
up local data storage instead of a central-
ized computing center. “The ethical impli-
cations of any further development run
deep,” writes Nikki Marinsek, a data scien-
tist at Evidation Health, in an email to The
Scientist. “The data collected is very sensi-
tive, and privacy must be the first consider-
ation when dealing with this kind of data.”Some people with cognitive impair-
ment may also have difficulty understand-
ing the consent they need to give to share
their personal data with a company. Many
studies enroll a partner or family member
for each person with cognitive decline, to
help them use the technology appropri-
ately and ensure they’re well cared for.
Another concern is how to provide
access to the technologies needed to do
the monitoring: personal devices such as
iPhones and Apple Watches aren’t cheap
and may be difficult to use for some people,
even with assistance. “The question is, can
you deploy them at scale, economically?”
says Novartis’s Jones. He recommends
researchers use something economical
such as a smart speaker—some of which
cost as little as $30—to collect speech
and other data on participants, rather
than a several-hundred-dollar iPhone or
Apple Watch. Researchers at Dart-
mouth-Hitchcock Medical Center in New
Hampshire and the U niversity of
Massachusetts, Boston, recently won a
grant worth more than $1 million from
the National Institutes of Health to study
whether voice assistants such as Alexa
(used by Amazon Echo) or Google Assis-tant (Google Home) could be used to
detect early cognitive impairment. (See
“Listening for Your Health,” The Scientist,
May 2019.)
Overall, researchers are enthusiastic
about the potential for digital technol-
ogy to improve early detection of demen-
tia. Au estimates that it’ll be less than
five years before there’s a well-validated
digital phenotype that will be able to
identify people who are at a higher risk
of developing dementia over the follow-
ing decade or so. “We have technologies
that allow us to now track behaviors in
much more continuous, granular ways,
so we can sort people out into various
subgroups with much greater preci-
sion,” Au says. “On top of that, we have
more advanced analytic capabilities
that are allowing us to look at multi-
dimensional sources of information.
These are all advances that are happen-
ing simultaneously... we are getting
closer, faster. I’m quite optimistic.” gRachael Moeller Gorman is a Boston-
based science journalist. Find her
at rachaelgorman.com or on Instagram @
rachaelmoellergorman.EARLY TREATMENTS?
Early detection is an effective tool in slowing disease progression when treatments are available. But currently, there are no cures available
for dementia, and pharmaceutical companies are increasingly reluctant to invest because so many trials have failed, says Arlene Astell,
who researches neurodegenerative diseases at the University of Reading in the UK. There’s some hope in Biogen’s aducanumab amyloid-β
clearance drug. The company’s clinical trial of the therapy in patients with early Alzheimer’s disease was halted last year when it seemed
patients weren’t improving, but a later analysis of patients who had taken higher doses of the drug did show clearance of amyloid-β plaques
and improvement of cognitive function. If aducanumab is eventually approved, it will be the first drug to both reduce clinical decline in
Alzheimer’s disease and show that removing amyloid-β leads to a better outcome.
But if the disease is caught early enough, lifestyle interventions may help. The FINGER (Finnish Geriatric Intervention Study to Prevent
Cognitive Impairment and Disability) trial, for example, recruited more than 1,000 people deemed at risk of cognitive decline on the basis of
educational attainment, physical activity, cardiovascular health, and other factors known to influence risk. The study found that people who
followed a two-year regime of exercise classes, diet plans, computer work, puzzles and games, and social activity, plus monitoring of metabolic
and cardiovascular risk factors, scored 25 percent higher on neuropsychiatric tests than control participants, 83 percent higher on executive
functioning, and 150 percent higher on information processing speed. “You’re using your brain circuitry slightly differently, and quite aggres-
sively,” says Graham Jones, director of innovation at Novartis Technical Research and Development, of the program’s participants.
Studies in several other countries, including the United States, Singapore, and Australia, are assessing the effectiveness of the FINGER
model in different populations as well. Dubbed World Wide FINGERS (WW-FINGERS), this collaboration hopes to harmonize research and
share data. Smart devices that can detect early signs of dementia may motivate their owners to actively engage in these interventions. With
the population aging in the US and many other countries, “a lot of people are gonna have Alzheimer’s,” says Jones. “So it’s a real, real issue
that’s got to be dealt with, and I think you’ve got to start very early on.”