Ethical family planning, or, In which I ask a lot of rhetorical questions I can’t answer.

Being of a childbearing age in a committed relationship leads to a lot of pressing questions of a child-bearing nature. I, personally, don’t find the concept attractive for a myriad of reasons (pragmatic and emotional). The most frequent excuse I give to the well-meaning baby-loving types is my genetics – I come from a family history of early onset cancers of a few different varieties, auto-immune disease, and genetic high cholesterol, in addition to my own general feebleness and frailty. My significant other has a similar family history, with inflammatory bowel disease and diabetes thrown in there for extra fun. Neither of us are particularly healthy specimens of our species, and I’m quite content with removing myself from the gene pool of an already over populated planet.

I have always thought to myself that truly, passing on my sad, feeble, recessive genes could nearly be called child cruelty, given the nearly inevitable poor health any such offspring would have. We live in the age of genetics, of genome sequencing, of really cool new breakthroughs that can accurately identify genetic predispositions to everything from HIV susceptibility to autism spectrum disorders to that thing that some people can do where they fold their tongue up all funny.

Doing this is a dominant trait. I can't do this (or other tongue folds.) Damn you, recessive genes! (Photo from volver-avanzar on Flickr)

In any case, it’s gotten to the point where numerous companies have popped up to do private DNA testing to “screen” for specific genetics (the majority of which are useless for determining your health, like your blood type, and the ability to fold your tongue, both of which can be determined in a cheaper and much more practical way.) In any case, there certainly exists the distinct possibility that in the not-too-distant future, everyone will be screening for genetic susceptibilities to disease, because we all certainly have them, and certainly they can be important for making family planning decisions. If you and your partner are both carriers for a particular risk factor, 25% of your children will receive a double hit of that risk factor, or worse, have full-blown disease. Some might question whether that is something that we should know, but I think that’s a silly question to ask. Sticking your head in the sand because you’re afraid of the implications solves nothing. People are welcome to make their own decisions for their own health, but when you are talking about the theoretical health of your theoretical child, I don’t think ignorance is appropriate. If you and your partner are both carriers of infant Tay-Sachs disease, a progressive and painful genetic condition which results in children typically dying horribly by three years old, you should probably take that into consideration when thinking about having children. Having a severely disabled child that you know that you will outlive is not a burden that every couple is prepared to take on. But what about if your children will be at increased risk for breast cancer or stroke? At what point do you switch from having a “healthy” child to a “sick” child, especially when the majority of us have multiple genetic risk factors and carry potentially lethal but extremely rare genes that we are simply unaware of? And if we are all genetically “sick,” then hasn’t the word lost all meaning?

Would your fear of passing on the BRCA1 (Breast cancer 1) gene play into your desire to have children? And if it would, are you equally worried about the alleles that we don’t even know about yet? And if it wouldn’t, at what point would it become a factor? And how much of a guarantee do you need before it becomes a consideration? Does 25% worry you, or does it need to get to 50% or 75% before you give it a prominent spot in your mind? What about 100%?

Even more interesting is an experience I had today with an individual with a serious genetic disorder. His life is full of doctors’ appointments and treatments to keep him alive, and 100% of his children will be carriers, in addition to having milder symptoms themselves. Would you have a child if you knew that it would be sick? And perhaps more importantly, if you were sick yourself and unsure if you would be able to be around to help raise them?

I don’t know the answers to any of these questions – clearly, in a lot of situations, environment plays a large role, and that is something you can change to prevent issues. There is screening and increased vigilance for those genetically at risk. I think it is safe to say that carrying a risk factor for something that is by-and-large environmentally based, like cardiovascular disease, is something that wouldn’t prohibit most people from having a child. Being assured that all children would be miscarried or stillborn is probably something that would prohibit most people from having children, to save themselves the emotional trauma. There is a line between those, but where, and how much does it move between individuals, over time, over situations? And truly, how can you ever know what the right thing to do is without asking the person it will affect the most?

These are the sort of questions that run through my mind – feel free to answer them with your opinion and how you derived that answer. My feeling is that parents should be emotionally, physically and financially prepared to cope with a child with potential congenital abnormalities, but as long as they go into it with hearts and eyes open, who am I to interfere? And if they do not have the resources to care for a potentially ill child and so abstain from having children, who am I to look down my nose? I would say that it is morally undesirable to willfully have children with genetic problems is if that family is unable or unwilling to provide appropriate care and support for that child, much as you would say for any child, only accounting for the increased amount of care necessary. Apart from that, feel free to have kids when you like, with whomever you like, as many times as you would like.

Just, please, before you do: think of the children.

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