My genetics may be imperfect, but they don’t determine my value

Have you ever been asked why your parents didn’t undergo prenatal genetic testing?

During a hospitalization for cystic fibrosis (CF) in my early 20s, a nurse asked my mom this question right in front of me. I rolled my eyes because I’d heard it before, although it didn’t take away from the sting of the underlying question: Would you still have had Lara if you knew something was wrong with her?

My mother was horrified, of course. She told the nurse that the gene mutation that causes CF wasn’t discovered until 1989, three years after I was born. The nurse nodded, a silent signal that this was an acceptable reason. My mom pressed further, though, emphasizing that regardless of the results, she would have had me anyway; I’m her child. The nurse finally seemed to realize how her question had come across.

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I am more than my genetics

It’s brazen to confront someone based on your own limited knowledge and understanding of a situation. That nurse didn’t know a thing about me. She didn’t know that my kind heart led me to earn a degree in counseling so that I could help people. She had no idea how funny I am and how hard I make people chuckle with my ridiculous jokes. Most of all, her question seemed to overlook the fact that my life has meaning, regardless of my genes.

Viewing a person only through the lens of their genetic code can be incredibly damaging. Our genetics are beyond our control, and when someone focuses only on that aspect of us, it’s dehumanizing.

I’ve known people who believe that if a genetic disorder is discovered in utero, it’s grounds for abortion. Becoming a parent involves risks, including the possibility that you won’t have a healthy child. Eugenics is dangerous. We’re designed to be human, not to be “perfect.”

It breaks my heart how often genetic disorders are the reason for abortion. So many people go on to experience health issues later in life, such as neurological disorders, mental health issues, cancer, and cardiovascular disease, and there’s no question of whether their lives are worth fighting for. But what about those who aren’t yet born?

The last time I checked, there wasn’t a perfect person on the planet. Almost everyone experiences health issues at some point, and nobody gets out of this world alive.

I believe that human beings have inherent worth and deserve to live, regardless of genetic makeup. Some of the most talented, resilient, and empathetic people I’ve met have had imperfect genetic codes. They’ve struggled on a soul level, and pain is often a constant companion, but these challenges allow them to relate deeply to others. I can’t imagine reducing their lives to the letters and numbers in their genetic code.

Even though my health isn’t perfect, I’m so grateful and happy to be alive. My genes have never told the story of who I am as a person. They haven’t diminished my ability to share love, compassion, and empathy with others; in fact, I’m better at doing so because of my experiences. My life is full of joy and struggle, and I would always choose this life because it’s rich and meaningful in more ways than I can count.

I’m so grateful that my parents gave me a chance at life. Their love and care were unmatched, as evidenced by their dedication to being there every step of the way through my tumultuous health journey.

Life is a precious gift, and everyone deserves a chance to share their unique presence. May we one day live in a world where every life matters, regardless of genetic codes.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.