May Lin

Genetic disorders occur when a mutation develops in a person’s DNA sequence, which affects their genes or chromosomes. Most (benign) genetic disorders are harmless, but pathogenic disorders can manifest as disease.

Adoption is not the same as childbirth. People want children who are born from their blood, who bear their DNA, who are somehow considered more “legitimate” than others.

But when a parent has or carries a severe genetic disorder, circumstances differ. The inheritance of this disorder can cause a child to experience disease, chronic pain, bullying, mental deterioration, and even death. 

According to the JAMA Network medical journal, almost half of infant deaths are caused by a birth defect, which results in over 3 million deaths each year. 

This is not to argue that every adult with a genetic disorder should not have children – that would be unjust and virtually impossible, as childbirth is a natural right protected by the 14th Amendment.

However, parents have the power to think before conception. 

There are various preventative measures that can be taken to avoid the transmission of genetic diseases, like preemptive implementation genetic testing (PGT), which screens an embryo for genetic abnormalities before the IVF process.

Although there are some ethical concerns behind these kinds of measures and their potential to be used for eugenics, it is far more unethical to gamble on a real child’s life. 

According to the Journal of Community Genetics, most couples that opted out of genetic testing and chose natural conception instead did so because it was a faster way to achieve pregnancy. 

This trivial decision can make or break a child’s life, especially if parents do not have the financial means to support a child with disability. 

Genetic conditions like tarsal coalition and multiple sclerosis can cause a lifetime of severe physical pain, deterioration, and mental health repercussions, according to the Genetic Alliance.

Although it is not the intent, to knowingly cause your child years of pain and suffering with your own genetic code is a selfish decision – one that can cause a lot of regret and resentment. 

According to the Journal of Community Genetics, most couples who were at risk of transmitting a genetic disease were not aware of all available reproductive options. 

Most listed natural conception and genetic testing as potential options, which omits alternatives like donor gametes (donated sperm, eggs, or embryos), PGT, foster care, and adoption.

Even for couples who are aware of these reproductive options, it is still a hard decision to make. PGT, donor gametes, and adoption are expensive. More so, the desire to have a biological child, who might or might not be genetically healthy, makes this a difficult dilemma to navigate. 

What hospitals can do to mediate this conflict is to provide parents with more information about alternative options and explain the inheritance risk of a parent’s genetic disease, as well as how it can impact their child in the future. 

Of course, there must be initiatives to make these options more accessible – as adoption can cost more than $50,000 per child, according to Adopting.com.

There might be concerns that some alternatives, like PGT, would cause biodiversity to suffer. It’s true that if every parent used PGT or donor gametes, our world would lack genetic variation.

However, biodiversity should not come at the expense of a child’s life.

In the end, parents know best what it’s like to live with their own genetic disease. As said by the National Library of Medicine, some genetic disorders are so severe that they are “incompatible with life.” 

But ultimately, the choice is up to them.