How people handle learning their genetic status
A Youngtimers Guide ・ Last Reviewed July 2, 2025Many people within our community wonder, ‘how would I actually handle getting the news that I carry an FAD mutation?’ Some find it helpful to reach out to others who have already received their genetic results to find out how they handled it.
To help answer question, Youngtimers set out looking for indicators of how people might handle learning their genetic status. We spoke with members of the Youngtimers community who have undergone genetic testing, and we also brought in Dr. Jill Goldman, a leading expert in genetic counseling for neurodegenerative diseases.
What types of people find resilience in the face of bad genetic news?
People tend to respond well to learning their genetic status when:
They consider themselves to be “planners.” They like to plan.
They’re troubled by the uncertainty of whether you carry an FAD genetic mutation.
They view knowledge as power.
They see genetic testing as a way to make more informed decisions about their future (family planning, research, planning finances.)
They already live their life assuming they carry the genetic mutation.
Finding out that they carry a FAD genetic mutation will motivate them to live a more healthy lifestyle.
They don’t have untreated psychological issues like depression or anxiety.
They’re making the choice independently.
They have friends, family, and a mental health provider they can lean on during the process.
They’ve gone through the entire professional genetic testing protocol, and have had adequate time to discuss all concerns at length with a professional genetic counselor.
They’re eager to participate in Alzheimer’s research if they can.
In the past, they’ve been able to find optimism in the face of really bad news.
Who struggles most with bad genetic news?
For some people, the burden of bad news from genetic testing carries a heavier weight. For these people, risks include longer periods of depression, anxiety, and even suicidal ideation. There are some people who have said that “they wake up every day wishing they’d never learned they carry an FAD genetic mutation” and “that you can’t unlearn your genetic result.”
A person may experience problems after learning their genetic status if:
They feel hesitant about genetic testing.
They’re being influenced or pressured by others to undergo genetic testing.
They can’t think of decisions they would make differently based on their genetic status.
They’re not big on planning. They like to live in the moment.
They prefer not to think about the disease because thinking about it makes them upset.
They know they would be devastated to learn they carry an FAD mutation.
Their hope relies on the chance they might not carry an FAD genetic mutation.
They have a history of depression or anxiety.
They don’t feel they have friends or family they can lean on during the process.
They would keep the information to themselves.
They have decided in the past not to learn their genetic status, or have postponed learning their genetic status.
They’re unsure whether they would choose to participate in Alzheimer’s research if they found out they carry an FAD genetic mutation.
They’ve struggled to find optimism in the face of really bad news in the past.