How to Cope with Genetic Testing Results
by Gina Simmons, Ph.D.
Amy, a professional woman aged 45, spit into a plastic tube and nervously awaited results from a 23andMe DNA testing kit. Adopted as an infant, her parents could not tell her about genetic health risks. She worried about a lump discovered in her breast. Doctors questions about family history of breast cancer were left unanswered.
Commercial genetic testing companies, like 23andMe and Ancestry.com, offer answers for the curious. Where did my ancestors come from? To whom am I biologically related? Do I have any genetic health risks? Ultimately we all want to answer the question, who am I?
Adults adopted as children often worry that their adoptive parents will feel hurt, or unloved if they wish to find biological relatives. “I want my parents to understand that I’m doing this for me. I love and appreciate everything they’ve done for me, but I need to know this for my health. I want to know where I come from, who am I?” Amy said. Many adoptive parents worry that their children will feel hurt, abandoned or disappointed. “What if Amy finds her biological mother and she’s a terrible person? I won’t be able to protect her from that?” Amy’s mother said.
Seeking answers to health risk questions can prove emotionally upsetting. Finding out you have BRCA1/2, genetic markers for breast cancer can trigger sadness and worry. Recent studies show that those who carry genes for risky diseases may go through a short period of increased worry and depression. However they return to normal mood within a few weeks. The risks of psychological pain appear to be short-lived. Finding out that you can prevent or reduce your health risks may make testing worth the emotional pain.
Family Secrets Revealed
Mark, a mixed race plumber and new father, took a DNA test, “just for kicks.” He was curious about his ancestry, and wanted to someday tell his new son about their heritage. Mark was stunned to learn that a sperm donor provided half his DNA. The man who raised him was not his biological father. When Mark talked to his parents about this discovery, they both got upset. His father grew emotionally distant, appearing embarrassed and irritated.
It took some time, and family therapy, before Mark and his parents could make peace with each other. “I grew to really respect my parents. My dad loved me and didn’t want anything to detract from our bond. They both wanted to create a strong secure family, and thought that keeping this secret would help.” Mark said. Mark’s parents discovered that letting go of the family secret felt like a relief. “As painful as it was to go through, I think it’s made us a stronger family,” Mark’s mom said.
Good News/Bad news
Amy, who took her DNA test to find out about her cancer risk, learned from her results that she did not carry the genes for breast cancer. She celebrated the good news with a shopping spree for new bras and dinner out with her husband. Curious about biological relatives, she found a half-brother, who expressed an interest in meeting her. Happily they now consider one another family, sharing holidays and family photos.
Not everyone receives good news. My friend, author Andrea Schneider, learned that she carried the BRCA gene. An accomplished attorney, she plunged into health research, as if preparing for the case of a lifetime. She chose a double mastectomy and breast reconstruction. Cancer free for more than 10 years, she wrote a book to help other women learn about their treatment options.
Whether you’re looking into your ancestry for personal or health reasons, it helps to gather support from others. Online communities of adoptees and donor-conceived folks can provide comfort. Check out: We Are Donor Conceived, DNA for the donor Conceived, the Donor Sibling Registry, DNA Detectives and DNAadoption.com to get started. Friends, family, physicians and psychotherapists can help you cope with the results.
As with any travel into the unknown, you might suffer some bumps and bruises along the way. It helps to approach your DNA search with an attitude of adventure. Let go of expectations and try to cultivate an openness to wherever your search may lead. You have the right to change your mind and stop searching. You can ignore results. Or you can plunge ahead and contact distant relatives. It’s your choice
Photo courtesy of Peter Alfred Hess.