Older Adults Have High Interest in Genetic Testing — and Some Reservations

More than 1 in 10 have had genetic tests ordered by a doctor or ordered them directly, a new survey finds. Others say they’re interested, but many have concerns.

8:01 AM

Author | Kara Gavin

Only a fraction of people in their 50s and early 60s have had their DNA tested either for medical reasons, to learn their ancestry or out of curiosity but far more have an interest in pursuing such tests.

LISTEN UP: Add the new Michigan Medicine News Break to your Alexa-enabled device, or subscribe to our daily audio updates on iTunes, Google Play and Stitcher.

One in 10 older adults have taken genetic tests offered directly to consumers, and 1 in 20 have taken genetic tests ordered by a doctor, according to new findings from the National Poll on Healthy Aging. More than half expressed interest in getting DNA tests to guide medical care, understand health risks or know their ancestry.

The poll of 993 adults ages 50 to 64 was conducted by the University of Michigan Institute for Healthcare Policy and Innovation and sponsored by AARP and Michigan Medicine, U-M's academic medical center.

It comes at a time when the U.S. Food and Drug Administration has approved several disease-specific tests to be marketed directly to the public instead of requiring a physician to order them.

Still, that desire to know more about their risk of disease or heritage and the ease of doing so is tempered: Two-thirds of poll respondents thought genetic testing could lead them to worry too much about their future health.

Attitudes toward home genetic testing

The poll also asked respondents about their interest in testing to learn their genetic risk of three later-life disorders: Alzheimer's disease, Parkinson's disease and macular degeneration. About two-thirds had at least some interest in each test.

MORE FROM THE LAB: Subscribe to our weekly newsletter

Scott Roberts, Ph.D., a professor at the U-M School of Public Health, worked on the poll's design and analysis. He notes that even people who get direct-to-consumer genetic tests mainly to learn about their ancestral heritage could end up being "blindsided" by findings showing that they have a high risk of diseases such as Alzheimer's.

"Compared to previous findings in the general adult population, this age group appears to be a little more lukewarm about their views of the benefits versus the risks of genetic testing overall," says Roberts, who has studied use of these tests, including direct-to-consumer ones.

"The majority said they might be interested in knowing their risk for specific conditions but on the other hand, they were worried about potential psychological distress from the results."

Roberts points out that no genetic test is 100 percent accurate. He also notes that testing ordered by physicians often comes with an opportunity to meet with a genetic counselor, a specially trained clinician who can help patients decide whether to get tested, prepare them for handling the results and help them understand what the results mean.

By contrast, direct-to-consumer testing often comes with none of these services. People who buy DNA tests directly may have difficulty interpreting them or getting access to a genetic counselor after they receive their results.

Genetic counselors are already in high demand for clinical cases, and their appointment times are prioritized for patients who have a clinical reason for DNA testing, including family history of a serious genetic illness.

"Patients may not think about the downstream effects of direct-to-consumer genetic testing," says Preeti Malani, M.D., director of the poll and a professor of internal medicine at the U-M Medical School who has special training in geriatric medicine. "An unexpected positive result may lead to several additional tests that may or may not be covered by insurance.

Compared to previous findings in the general adult population, this age group appears to be a little more lukewarm about their views of the benefits versus the risks of genetic testing overall.
Scott Roberts, Ph.D.

Experience with genetic testing

The 5 percent of poll respondents who had already had a genetic test ordered by their physician said it was done either because the physician suggested it or because they had wanted to find out more about their risk of disease or how best to manage a current condition.

Ten percent had done a direct-to-consumer test. Of that group, more than 70 percent said they were interested in learning more about their ancestry, and just under half said they were curious about their genetic makeup. Just over 1 in 10 said they ordered a home testing kit to find out more about their health in general or their risk of a particular disease.

SEE ALSO: Survey Offers Biobanks a Lesson in Gaining Patient Trust

Combining the two types of genetic testing, 14 percent had had either kind.

"We're living in an era when advances like DNA testing are providing an amazing amount of useful health information," says Alison Bryant, Ph.D., senior vice president of research for AARP.

"As genetic testing becomes even more sophisticated and common among older adults, the challenge will be to ensure that people understand the benefits and limitations of these tests."

Future of genetic testing

Roberts, who specializes in genetic testing for Alzheimer's disease, notes that 70 percent of poll respondents had an interest in learning their Alzheimer's risk.

Newer clinical trials of drugs that aim to prevent, delay or slow progression of memory loss and other cognitive problems are looking to enroll people who have a higher-than-usual genetic risk of Alzheimer's. Those who elect to buy a genetic test, or whose doctors order one for them because of family history, may now have an action they can take based on their results.

"Before, there wasn't much we could recommend, but now there are more research opportunities to take part in, and we know more about health behaviors earlier in life that can affect the risk of Alzheimer's and other forms of dementia later in life," Roberts says.

Poll respondents seemed to understand that genetic testing provides a potential window into the future, both for their own health risks (90 percent agreed with this idea) or for those of their children and grandchildren (86 percent). But 41 percent said a genetic test wasn't necessary if they already know what disease risks run in their family.

The poll results are based on answers from a nationally representative sample of 993 people ages 50 to 64. The poll respondents answered a wide range of questions online. Questions were written, and data interpreted and compiled, by the IHPI team. Laptops and internet access were provided to poll respondents who did not have it.


More Articles About: Lab Report genetic counseling Genetic Testing Alzheimer's Disease Parkinson's Disease Counseling
Health Lab word mark overlaying blue cells
Health Lab

Explore a variety of health care news & stories by visiting the Health Lab home page for more articles.

Media Contact Public Relations

Department of Communication at Michigan Medicine

[email protected]

734-764-2220

Stay Informed

Want top health & research news weekly? Sign up for Health Lab’s newsletters today!

Subscribe
Featured News & Stories circular image colorful on navy background
Health Lab
23andMe is potentially selling more than just genetic data
An expert shares details about the privacy issues and genetic data with 23andMe happening.
Minding Memory with a microphone and a shadow of a microphone on a blue background
Minding Memory
Exposure to a Natural Disaster and Long-term Cognition
In this episode, Matt and Lauren speak with Drs. Elizabeth Frankenberg at the University of North Carolina at Chapel Hill and Duncan Thomas at Duke University about their research which focuses on understanding how survival and physical health evolve after exposure to large scale shocks like the 2004 Indian Ocean Earthquake and Tsunami. They will specifically speak about the STAR Study and what they’re learning about long-term effects on cognitive outcomes.
person talking to older couple on couch in living room
Health Lab
85% of Mexican Americans with dementia unaware of diagnosis, outpacing overall rate
More than three-quarters of older adults with dementia may be unaware of their diagnosis, a University of Michigan study finds. 
Minding Memory with a microphone and a shadow of a microphone on a blue background
Minding Memory
Understanding Dementia Risk Factors with Helen C. Kales, MD
In this episode, Matt & Lauren have the unique opportunity to talk with Dr. Helen C. Kales, a geriatric psychiatrist and health services researcher who has participated in the previous Lancet Commissions on Dementia Prevention, Intervention and Care – including the most recent one released in 2024. Dr. Kales discusses how the commission puts together all the evidence to make recommendations that can play a crucial role in dementia prevention. Dr. Kales is the Chair of the Department of Psychiatry and Behavioral Sciences and Joe P. Tupin Professor of Psychiatry at the University of California at Davis and has dedicated much of her career to improving the lives of patients living with dementia.
Minding Memory with a microphone and a shadow of a microphone on a blue background
Minding Memory
The Link Between Hearing Loss and Cognitive Decline
Hearing loss is one of the most common conditions of aging, affecting nearly two-thirds of older adults over the age of 70, but it’s not just a matter of diminished hearing. Hearing loss can contribute to poor psychosocial outcomes for patients including loneliness, depression, and social isolation. New research also shows that hearing loss is linked to a higher risk of cognitive decline and dementia. In fact, the 2024 Lancet Commission on Dementia Prevention, Intervention, and Care identified hearing loss as one of 14 modifiable risk factors for dementia. According to the commission, treating hearing loss could prevent up to 7% of dementia cases globally, making it one of the most impactful areas for potential prevention. This raises the question of whether use of hearing aids in people with hearing loss can reduce or mitigate this increased dementia risk. To help us understand these connections and the latest research in this area, we are joined today by Dr. Alison Huang, an epidemiologist and Senior Research Associate from the Johns Hopkins Cochlear Center for Hearing and Public Health. Her research studies the impact of sensory loss on cognitive and mental health in older adults. Dr. Huang was an author of the Aging and Cognitive Health Evaluation in Elders (ACHIEVE) study, a large, multicenter randomized controlled trial that tested whether treating hearing loss in older adults could help slow cognitive decline published in the Lancet. Alison Huang, PhD, MPH Link to article: Lin FR, Pike JR, Albert MS, Arnold M, Burgard S, Chisolm T, Couper D, Deal JA, Goman AM, Glynn NW, Gmelin T, Gravens-Mueller L, Hayden KM, Huang AR, Knopman D, Mitchell CM, Mosley T, Pankow JS, Reed NS, Sanchez V, Schrack JA, Windham BG, Coresh J; ACHIEVE Collaborative Research Group. Hearing intervention versus health education control to reduce cognitive decline in older adults with hearing loss in the USA (ACHIEVE): a multicentre, randomised controlled trial. Lancet. 2023 Sep 2;402(10404):786-797. doi: 10.1016/S0140-6736(23)01406-X. Epub 2023 Jul 18. PMID: 37478886; PMCID: PMC10529382.
patient family and child life team member smiling and then a photo next to that one with the same worker helping someone in a wheelchair in a patient office
Health Lab
A pediatric program helping adults through cardiovascular disease, surgery
A child life program that has helped kids and their families reduce stress and anxiety associated with hospitalization and illness is now finding success with adult patients undergoing complex heart procedures as well.