Since I work in a cystic fibrosis (CF) lab and prioritize being open about my experiences with the disease, I’ve had some pretty heavy philosophical conversations with scientific peers. One of those conversations has been about my perspective on the concept of passing on the CF gene.
CF is a genetic disease that requires two copies, one from each parent. The gene continues to get passed on to future generations, knowingly or unknowingly, by three populations: people who have CF, parents who have already had one child with CF, and people who carry the mutation but have never had a person with the disease in their family.
So an interesting but difficult question can be asked: Is it unethical to have a child if you already know you are a carrier of CF?
This question is particularly important for people who have CF and parents who have already had one child with the disease. It’s possible — albeit much rarer than it used to be with the availability of genetic counseling — to be a carrier of CF and have a child with one or two disease-causing CF mutations. (There are mutations that don’t actually cause clinical disease.)
As I’ve talked about previously in my column, CF very much affects my long-term outlook. I have a hard time looking deeper than five years into the future because I risk overestimating the stability of my health. That doesn’t mean I don’t have a future.
I resented the suffering that my sister experienced at times, but she was able to have an enormous influence on the lives of hundreds of people. Today, CFTR modulators are giving people like me the opportunity to look at the future differently than they ever have. Since my first simple understanding of CF as a kid, I’ve been fascinated with science, and I’ve parlayed that fascination into a fulfilling, interesting career in CF science.
CF is a tragic disease. I wouldn’t wish CF on the child of my worst enemy. And I hope that with better screening and reproductive techniques, we can continue to make it rarer, while at the same time improving medicine and science so that it’s a smaller aspect of the lives of future people with CF.
I’ve seen a wide swath of opinions about every issue in the CF community expressed online, but one that is particularly abrasive to me is when people demonize the parents who have had more than one biological kid after their first was diagnosed with CF or people with CF who choose to have biological children. Often, they’re derided as selfish and rude at best, and at worst they’re treated as though they themselves are responsible for the continued curse and torment that is the broken CFTR gene. I’m biased here, as my parents had another kid (me) after my sister was diagnosed with CF. But my parents are special people, and were some of the most committed parents in the world.
There are days I want to be nothing but normal: not to have to do my treatments or worry about infections or a random person’s cough in the elevator or about refilling medications this month. But then I think about what CF has provided me.
Because of CF, I have a platform. I have the discipline to take my health seriously. I’ve found that I need to take life seriously so I can enjoy it, feel fulfilled, and hopefully leave a good impact. I have a career where I get to study and understand complicated aspects of CF and improve the lives of people who may be losing hope.
I think parents should take caution when choosing to have a child once they know they are a carrier. Are they willing to be there for that child? Are they willing to do what it takes to make sure that the child gets the best care possible and always feels loved — and normal? With today’s CF medicine, it certainly isn’t the same diagnosis it was 20 years ago. It’s hard to say there are “benefits” to having CF, but it doesn’t have to be a life sentenced to misery.
I won’t be settling the ethical question in this column; I have a hard time policing people’s decisions about their children.
I don’t love the fact that I have CF, but it’s something I can’t change, so I may as well embrace it.
Follow along with my other writings on my humbly named site, www.trelarosa.com.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.