When Your Child Faces Genetic Testing (Part 1): A Family's Story and What Adult Children Need You to Know

Written by Rebekah Wells on behalf of FORCE

One mother and her adult daughters share what they learned—and what they wish they’d known—about navigating genetic testing together.

Note: To protect this family’s privacy, we do not use real names in this article. But the story, the emotions and the advice are very real—generously shared by a mother and her daughters so that other families might feel less alone.

How it Started

One mom never expected a routine surgery to change her family’s life.

Her youngest daughter had a benign thyroid tumor removed in 2019, at age 19. A few years later, her sister—who was in her late 20s—had a similar tumor. Her lab results came back with a recommendation: genetic testing for a rare PTEN mutation.

Their surgeon brushed it off. “Don’t worry,” he said. “They say this to everyone.”

But the youngest daughter remembered something important. Years earlier, as a teenager, a specialist had mentioned genetic testing in connection with a different issue. At the time, it wasn’t pursued, and the rest of the family didn’t recall that conversation—but she did.

Now, as a young adult, she decided to revisit that recommendation and move forward with testing.

The test confirmed that she carried the PTEN genetic mutation.

Two of the family's three adult daughters underwent testing and tested positive for the same genetic mutation. Mom tested negative. That meant her daughters inherited the PTEN mutation from their father, who had passed away several years earlier from an unrelated health issue. Instead of feeling relief that she did not carry the genetic mutation, the girls’ mom felt the opposite. Her negative test brought a wave of guilt she didn’t expect—a feeling that she was somehow “abandoning” her children by not sharing their diagnosis.

Whether your family is facing an inherited mutation in BRCA1, BRCA2, ATM, CHEK2, PALB2, PTEN, another high-risk gene or Lynch syndrome, the emotions are often the same: fear, guilt, love and a deep need to do something. This guide is for every parent who has felt that pull and wondered how to help without taking over.

What Adult Children Want Their Parents to Understand

Before we talk about what parents can do, it’s worth hearing directly from the adult children who lived this experience.

One daughter put it simply:

“The most helpful thing a parent can do when supporting an adult child through a genetic diagnosis is to give that child the autonomy to make their own decisions. I recognize how hard it can be when you learn that your child is facing something pretty intense and difficult, but projecting what you would do and the choices you would make onto them is ultimately unhelpful. If your child comes to you asking for advice or guidance, offer it. But your primary role as a parent is to be a listening ear and a support system as they make sense of their diagnosis.”

She also named something many parents don’t realize:

“Information overload is real. My mom often asks me, ‘Have you seen this article or study?’ If I want to read it, she sends it; if not, I always have the opportunity to tell her I’m not open to it right now.”

Her sister echoed this, and added something parents often overlook:

“I would also add the importance of the parent finding their own support if they are having a hard time with their child's diagnosis. I know it has been hard for my mother to watch both of us go through this, and I appreciate that she has found an outlet for those feelings—and not dumping them onto us as we navigate this.”

Five Things This Family Learned that They Want to Pass On to Others

Through months of appointments, hard conversations and honest reflection, Mom and her daughters discovered what actually helps and what doesn’t. Here are five guideposts for parents walking this road.

1. Let Your Adult Child Lead

When your child is grown, your role shifts.

“The more you try to impose your views, the only thing that it does is they distance themselves from you…There comes a point where you need to protect your relationship. You no longer have control over what they do.”

Your child may make decisions differently than you would. That doesn’t mean they’re wrong. It means they’re navigating this in their own way.

Your role is not to direct; it’s to support.

For this mom, that meant looking for ways to help that didn’t take decision-making away from her daughters.

After learning about the genetic mutation, the sisters faced the question of how to share that information with their extended family, especially on their father’s side. Since their father had passed away, that responsibility would have naturally fallen to the daughters.

Instead, Mom offered to take that on, and the daughters were grateful for her help.

She reached out to their paternal relatives and shared the information, so her daughters didn’t have to carry the emotional weight of those conversations, while still honoring their wish that family members be informed.

It was one way she could step in without stepping over.

Looking Ahead

This was one of the most meaningful shifts this family made: learning how to stay close while stepping back.

But it was only the beginning.

In Part 2, they share the additional lessons that helped them navigate boundaries, communication and support, while honoring each person’s needs along the way.

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