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The All of Us Research Program is getting closer to sharing health-related DNA results with participants. A key player in this process is a trained professional we’ve mentioned in other stories: a genetic counselor.
Genetic counselors are part genetics experts and part counselors. They explain DNA results and disease risk. They also provide support around the emotions that may come up when you learn about your DNA.
All of Us participants who choose to receive DNA results can meet with a genetic counselor to discuss them. This includes the Hereditary Disease Risk report and the Medicine and Your DNA report. Genetic counseling appointments are always free for participants. They are available with English- or Spanish-speaking genetic counselors. And interpreters are available for more than 200 languages.
Many studies offer genetic counselors to go over results with participants. But All of Us also offers a free support center. Participants and health care providers might have questions outside of an appointment. They can call the support center to talk to support staff trained in genetics as well as genetic counselors.
How Does it Work?
All of Us genetic counselors will talk with participants on the phone. They will walk the participants through the report to make sure they understand the results. They will answer the participants’ questions. And they will help the participant talk through their feelings about their results.
“It can sometimes seem overwhelming. How do you know exactly what to do once you have that information?” says Emily Kelley, M.S., CGC, an All of Us genetic counselor.
“We want participants to leave the conversation feeling empowered. And equipped to know exactly what they’re going to do next. That might be talking to their doctors. It might be sharing their results with their family members. It might mean seeking support,” Emily says.
To help a participant feel empowered, genetic counselors need to know a bit about the participant’s approach to health. It helps to understand that person’s background. That means both emotionally and culturally.
Carla McGruder, M.S., CGC, is another All of Us genetic counselor. She says that understanding different cultures is part of her job.
“I may talk to someone from a culture that has a great reverence for doctors. I know they will trust what a doctor says,” Carla says. “But for someone from a community that has a low trust level when it comes to medicine, I might have to take a different approach.”
Genetic counselors work to understand many aspects of a participant’s situation. If a participant lives in a rural area, the closest heart doctor might be hours away. A genetic counselor needs to know that before talking about treatment options. “Without knowing,” says Carla, “I think I’m empowering you, but I might really put a burden on you. We have to connect to our clients to really help them.”
Becoming a Genetic Counselor
Most genetic counselors have a master’s degree in genetic counseling. The courses they take are part genetics and part psychology. But genetic counseling students come from many educational backgrounds. Carla studied anthropology, biochemistry, and theater. Emily wanted a job that was always changing. She wanted to help people. And she wanted to use her bachelor’s degree in Spanish.
Talking about genetics in Spanish requires flexibility. “There are Spanish speakers from so many different countries. They may use different words for the same concept,” says Emily. “So trying to find the best word choices can be challenging in Spanish. But I really try, in all of my counseling, to use language that is as clear as possible.”
What to Expect When Making Your Appointment
All of Us is taking steps to make genetic counseling easy for participants.
“All of Us is made up of such a diverse group of people,” Carla says. “We don’t want to assume that the way we do genetic counseling is going to be one size fits all.”
After all, genetic counseling can’t be one size fits all. Because All of Us is not one size fits all.
There’s a story in every person’s genes. We hope that sharing DNA results will help you understand your story a bit better. Along the way, remember that our genetic counselors, like Emily and Carla, are here for you.
More than 529,000 participants who have completed the consent process.
More than 371,000 participants fully enrolled.*
More than 2,400 research projects are using All of Us data.
*Fully enrolled participants are those who have shared their health information with All of Us, including giving blood and urine or saliva samples.
One of All of Us’ goals is involving groups of people who have been left out of research in the past. Older adults are one of these groups. To reach out to older adults, the program needed a partner. That’s where FiftyForward comes in.
FiftyForward provides educational and wellness programs for older adults in Tennessee. Through its partnership with All of Us, it helps older adults learn more about their health. This information can also help improve the health of future generations.
FiftyForward’s seven centers offer classes in exercise, art, and more. The organization has worked with people 50 and older since 1956. When All of Us was looking for a partner to help reach older adults, FiftyForward was ready.
“We bring the experience we have from working in this field so that older adults are engaged, they are part of the conversation, and they are encouraged to participate in the program,” says FiftyForward Chief Program Officer Gretchen Funk.
FiftyForward’s work is very important when it comes to helping older adults in rural communities. Older adults in rural areas may not have easy access to health care or reliable internet. As a partner, FiftyForward trains volunteers to help others join All of Us. It has also advised other organizations on how to train volunteers.
“We offer tech support for anyone who wants to enroll,” says Kelsey Mahaffey. Kelsey is the All of Us project director for FiftyForward. She explained that the volunteers help other older adults use technology, including phones, tablets, and the internet. That’s because some parts of the program—like joining and taking surveys—happen online.
The volunteers are also important in letting people know about All of Us news and valuable information for participants, like their genetic results.
“Volunteers are committed to the mission of All of Us. They spend a lot of time with Kelsey and her team, staying up to date on all the information,” says Gretchen.
Although FiftyForward is exclusively focused on Tennessee, they partner with other older adult-serving agencies and continue to expand their services.
“We plan to open an additional adult day service program in 2023,” says Gretchen.
When the COVID-19 pandemic began, FiftyForward had to find new ways to connect with All of Us participants. So it launched a series of virtual meetings called the All of Us Online Café. The meetings covered topics like trust in research and vaccine trials.
“COVID threw us all into the virtual world,” says Gretchen. “Before the pandemic, our reach was limited. The ability to move online allows us to reach people outside of middle Tennessee.”
Over time, the meetings became permanent. Now they are a way for FiftyForward to connect with older adults who are curious about All of Us and other health-related topics.
“Now those online meetings have turned into a series. It’s called 'Aging Well,' and we partner with a local physician. She comes on once a month and we have a topic related to health research. We present a 30-minute virtual event,” says Gretchen.
Connecting older adults with All of Us makes FiftyForward an important partner for the program. This connection also gives participants a way to contribute to future generations.
“The older adult life stage has to do with consolidating your experiences,” says Gretchen. “You look back over your life and you think: 'What have I done? How has that contributed to myself, to my family?' All of Us offers that chance. You can participate in this program. The program will learn through your data and your life experience. And you will have contributed to future generations. It can feel very satisfying for an older adult to participate in that way.”
Alzheimer’s disease affects more than 6 million people in the United States. It is the most common type of dementia. People with Alzheimer’s or related dementias lose their memories and reasoning skills. As the disease progresses, they can lose their personality and their ability to do everyday tasks, such as feeding and dressing themselves.
Researchers are working to learn more about why some people get the disease and some don’t. They are studying what causes the disease. They are also studying how it damages the brain. Their findings could help lead to ways to prevent or treat Alzheimer’s and related dementias.
September is World Alzheimer’s Month. This month, let’s look at what scientists are learning and how All of Us data can help.
How Alzheimer’s Affects the Brain
Alzheimer’s disease is known for plaques and tangles that form in the brain. Plaques form when beta amyloid proteins clump together around brain cells. The plaques get in the way of the brain’s normal functions. Brain cells then start to die. Tangles are made of tau proteins. They form tangled masses in brain cells. These tangles affect the cells’ normal function.
Health researchers often study these plaques and tangles. But there are many other ways to study Alzheimer’s.
Alzheimer’s and All of Us
All of Us participants play an important role in Alzheimer’s research. More than 1,000 participants have been diagnosed with Alzheimer’s disease or related dementias. There are also more than 90,000 participants over the age of 65, putting them in an “at risk” group. These numbers make All of Us one of the largest datasets for studying this disease and those at risk of being diagnosed.
Research projects related to Alzheimer’s and related dementias have already started. Researchers are using All of Us data to make connections between Alzheimer’s and other conditions, like:
Other studies are looking at what makes someone more or less likely to get Alzheimer’s. Because of the diversity of All of Us data, researchers can study this question in many ways, including:
This research will take many years. But eventually, findings from these projects might help us learn how to catch Alzheimer’s early. They also could help us learn how a person’s circumstances can affect their treatment.
All of Us data is unique. Researchers can use a range of types of data. These include electronic health records (EHRs) and surveys. The different data types mean that diverse types of projects are possible. EHRs can be used to study how treatments affect different groups of people. Other data like surveys can help researchers study how Alzheimer’s affects someone with the disease and their caretakers. As Alzheimer’s research using this data grows, we look forward to sharing what we learn.
You can learn more about Alzheimer’s from the NIH’s National Institute on Aging. To find out more about how researchers are using All of Us data to study Alzheimer’s, visit the All of Us Research Projects Directory.
Voices of All of Us: Dr. Eboni Winford
Eboni Winford, Ph.D., MPH, grew up in Norfolk, VA, with her single mom and maternal grandmother, who ran a daycare in their home. As a child, Eboni helped her grandmother make lunches for the children. Now, she helps patients get health care. Dr. Winford is the director of research and health equity at Cherokee Health Systems. She is working with All of Us to help people from underrepresented communities understand what the program does. She makes sure participants are comfortable sharing their health data. She also makes sure they know what they can learn in return for joining the program. Read more about the culture of care that Dr. Winford promotes within All of Us.
Share Your Health Records in Your Portal
All of Us recently made it easier for participants to share their electronic health records (EHRs) from their All of Us account. Log in to learn more about how to connect records from one or more of your providers. EHRs connected through the Participant Portal will be organized in the new Health & Wellness Dashboard. With the click of a button, you can see related health information from MedlinePlus.
Your EHRs have information about your health care. If you choose to share these records with All of Us, researchers will have more information to study. They can combine the information from participants’ EHRs with other data, like survey answers, to learn more about why people get sick or stay healthy.
Refer a Friend
Want to let friends or family know more about what All of Us is doing? Soon you will be able to invite family and friends to join the All of Us Research Program through the Participant Portal. Log in to learn more about how easy it is. We have done the work for you! Options include a pre-drafted email that you can send straight from your dashboard. Or you can copy and share a link to send to family and friends through social media or text. Thank you for spreading the word about All of Us.
The All of Us Journey Exhibit
All of Us hits the road! The All of Us Journey bus helps visitors from different communities learn about precision medicine research. Visitors can see the power of participation in health research firsthand. You can even sign up to be an All of Us participant if you choose to. You can find the Journey in the following cities: