The New York Times parenting blog has an interesting entry about the pressures on people to have healthy children, entitled “Rolling the Dice of a Genetic Legacy” about a woman with a genetic disorder called brittle bone disease.
This is probably too big of an excerpt for RMG’s taste, but I want to be sure our discussion here is informed by the full context of her story and I don’t want to cut any of this out:
Between her second and fourth birthdays, my daughter had six broken bones. At the same time, my husband and I were grappling with whether, and how, to have another baby. Every child of mine has a 50 percent chance of inheriting OI. While I adored this child with her golden curls and limitless curiosity, I also longed for assurance that our next child might break an arm falling down the stairs but never putting away a laptop.
We went through one cycle of preimplantation genetic diagnosis (PGD), which is in vitro fertilization (IVF) with the added step of screening embryos for particular genetic mutations. Of the four embryos produced from our sperm and eggs, only one did not have my OI mutation. Two weeks after that little bundle of hope was transferred to my uterus, my pregnancy test came back negative.
By that time, the desire that had seemed so simple-to have a strong-boned baby-had become complicated. PGD is emotionally and physically exhausting. It is expensive. But even if we could pay for another cycle, I was no longer sure I wanted to.
The staff at our fertility clinic told us many things-about success rates and health risks and appointment schedules and how to snap the top off a glass vial of powdered hormones, add sterile water, draw the concoction into a syringe, and jam it into the roll of pudge under my belly button.
They did not tell us that our PGD treatment would lead us down a twisted path choked with hard questions about choice, responsibility, and suffering. Questions about whether it is a good or bad thing for parents to choose particular traits for our children to inherit-or not. Questions about whether fertility medicine feeds on a culture that expects parents to meet higher and higher standards for raising successful, healthy children. Questions about what technology designed to prevent the birth of children with genetic disabilities says about the value of people living with those disabilities, like me and my daughter. Questions about whether parents have a moral duty to prevent our children’s suffering.
The weight of those questions, combined with the financial and emotional costs of PGD, was too much. We did not do another cycle.
Instead, we conceived another baby naturally. I knew we could very well end up with another fragile baby. I also knew I could not stomach the sickening lurch of uncertainty I had felt during my oldest daughter’s earliest days, when we suspected she had OI, but did not yet know for sure. This time around, I needed to know, from the beginning, exactly what we were dealing with. I had an amniocentesis done. A few weeks later, the phone call came letting us know that our second daughter did not inherit OI. Two years later, we got the same news about the baby boy who completed our family.
Our journey through PGD, with all of those awful questions, rubbed me raw. But it uncovered a hard, shining truth: If either of those amnios had come back positive, I would have welcomed and adored another fragile baby.
I know, from the most strenuous sort of experience, that life with a broken body can be rich, full, and happy. In the end, I embraced my imperfect body, accepting both its miraculous ability to bear babies, and its heartbreaking ability to transmit pain. I also know that little girls should not break their legs falling off a child’s couch. OI is a menace. I will never stop feeling grateful that our younger two children escaped it. I will never stop grieving that our oldest daughter did not, even as I cannot imagine her being anyone other than the smart, lovely young woman she is becoming.
I do not know whether the choices we made were good or bad, right or wrong. We have the children we have-all three much-wanted, beautiful, imperfect, beloved. We made the choices we made. All I know for sure is that none of them were easy.
In the comments, she is chastised for selfishly having children naturally:
Instead you describe giving in and conceiving naturally, and to hell with condemning another person to a lifetime of breaking bones. Your desire to temporarily hold a child in your arms seems to completely outweigh any desire for that child to be as healthy as possible. Having children is a choice, a chance, a privilege, and not a right, and I just can’t understand your choice.
That comment is why I say we need to affirm in law that marriage approves and allows the couple to conceive offspring using their own genes. People should not be pressured to use PGD or to use donor gametes, or told they did not have a right to have their own children.
Here is another offensive comment on a post by Wesley Smith about sperm donation:
Reproduction should be licensed. Licenses issued after proving stable home, means to support, insurance for health care and any defects of issue, and posting of an appropriate surety bond.
In irresponsible reproduction, the capacity to impact and wreak havoc in society is at least equal to that of driving a vehicle, piloting an aircraft, practicing law, medicine, accounting, etc without the required license…..
To which I replied, with maximum shock value:
We already license reproduction, Big Don, it is called marriage. All intentional conception using gametes from unmarried people should be prohibited, sperm donation industry should be shut down, people who facilitate it should be fined and jailed, and children born as a result should be taken and raised in foster homes. Getting pregnant through unmarried sex is generally not intentional and so would not be punished to the same degree, unless they admit that they did it intentionally.
Eugenics is not dead, it just became market-based “crypto eugenics” or “liberal eugenics” after the Nazis gave state-directed eugenics a bad reputation. But their propaganda posters would work just as well in liberal eugenics and these sentiments are alive and well:
Nazi propaganda for their compulsory “euthanasia” program: “This person suffering from hereditary defects costs the community 60,000 Reichsmark during his lifetime. Fellow German, that is your money, too.”