A couple whose first child was diagnosed shortly after birth with cystic-fibrosis-related metabolic syndrome is debating whether to use IVF genetic testing to reduce the risk in a future pregnancy, raising ethical concerns about embryo selection and disability.
The child, now nearly 3, carries one cystic fibrosis-causing gene and one variant of varying clinical consequence. Children with that combination face a small but real risk of developing full cystic fibrosis by age 8, though many remain healthy, according to specialists.
The parents, who requested anonymity, say their son is asymptomatic and thriving, requiring only annual monitoring at a cystic fibrosis clinic. Still, they are considering in vitro fertilization, or IVF, with preimplantation genetic testing to avoid transferring embryos carrying the same gene combination.
Family Considers Testing To Reduce Future Health Risks
The mother said the decision is not straightforward because the risk of disease progression is relatively low and treatments for cystic fibrosis have improved significantly in recent years.
“If my husband and I each carried typical cystic fibrosis-causing variants, IVF genetic testing would be a no-brainer,” she said. “But with such a small risk of illness, does this type of embryo selection border on eugenics?”
She also expressed discomfort at the idea that selecting against embryos with the gene combination would mean she might not have chosen the embryo that became her son. “He is now a healthy and joyful child whom I love beyond measure,” she said.
Advances in medication have changed the outlook for many people with classic cystic fibrosis, improving life expectancy and quality of life. However, some children with similar genetic profiles later require daily breathing treatments and ongoing medical care.
Bioethicists Debate Meaning Of ‘Eugenics’ In Modern IVF
Bioethicists say the question reflects broader debates about reproductive technology and disability. One concern, known as the “expressivist” argument, suggests that selecting against embryos with certain traits may imply negative judgments about people living with those conditions.
“You already have a child with this condition, whom you couldn’t love more,” one ethicist said in response to the family’s question. “Choosing to avoid a health risk is not the same as rejecting a person.”
Experts note that medical interventions to treat disease are widely accepted and are generally seen as targeting the condition rather than diminishing the worth of individuals who have it. They argue that IVF genetic testing, while philosophically distinct because it determines which potential child is born, may similarly reflect a judgment about health outcomes rather than human value.
The term “eugenics” carries historical weight, often associated with coercive sterilization, racism, and discrimination. Ethicists caution that contemporary reproductive choices made voluntarily by parents differ sharply from past state-sponsored programs.
Broader Moral Questions Remain Unsettled
Some people oppose embryo testing and disposal entirely, arguing that embryos with the potential for a life worth living should not be denied birth. Others who accept abortion rights contend that the possibility of a meaningful life does not automatically confer an embryo’s right to life.
“Believing that a life without disease is, other things being equal, better does not mean believing a person with disease has lesser value,” the ethicist said.d
The family’s deliberation underscores the complex moral terrain facing parents as IVF genetic testing becomes more precise and accessible. As reproductive technologies advance, similar decisions are likely to confront more families weighing medical risk, personal values, and evolving standards of care.
Source: https://www.nytimes.com/2026/02/14/magazine/genetic-syndrome-ivf-ethics.html
