a little east of reality

Thursday, March 30, 2006

there is no gene for the human spirit

I've been thinking about inherited conditions this week. Sniper was talking about his new son and he mentioned that the baby's mother had to undergo tests throughout her life, because her dad died from after effects of exposure to Agent Orange in Vietnam. She of course knew about her dad's exposure, and her own risks, but the pregnancy wasn't planned, so she didn't ever make the decision to pass on those risks. Sniper sometimes worries (as new parents always worry) that his son may develop cancers and the like as a result of this genetic heritage, but he knows there's nothing he can do about it and is just determined to do all he can for his son if the challenges come.

A few years ago, a friend of mine found out that she had a genetic disorder that would manifest itself in various ways later in life. She faces not only an uncertain future herself, but also the upsetting knowledge that she may have passed this genetic time bomb on to her kids (she had her kids before finding out - any examples of it in her ancestry had been explained in other ways and her kids will not be tested for several more years). She said she would accept the worst potential scenario for herself if only it would mean that her kids were free of it. Sadly that isn't her decision, and only time will tell the kids' genetic fate.

A third friend accepted a sperm donation from a friend, only to end up with a child who has textbook ADD plus OCD and Asberger tendancies. None of those are fun. I don't think she would have asked him to help her in this way if she'd known his genetic makeup. But her situation is completely different. She was not in love with this guy, had no intention of raising the child with him, and his part in the process could have been fulfilled by any healthy functioning man alive. But what about when you are deeply in love with someone and no-one else, genetically more sound or not, could ever take their place in your heart? For a goodly portion of the population, feelings like that leads to wanting to have children together. How do you make that decision? Is it fair to have children you know are seriously at risk?

I've thought about this before - it's been an issue to address in every abortion debate I've ever been a part of: should you abort a child if you find out it has a serious and debilitating condition? (And should you make that decision based on the effect on the child, or on the effect of the child's condition on the parents' lives? - I've seen both argued). We've also seen the question of whether it's right to judge the quality of a person by their genetics played out in movies like Gattaca (the tag line of which I've used for my title). But the drive to produce genetically perfect children is not what this is about.

This is more about whether people should go ahead and have children, knowing that they are very likely going to pass on serious genetic disorders (think cystic fibrosis, sickle cell disease, or SCID). I wonder how a person goes about making a decision like that. How do you weigh up the very natural desire to have children with the very real risks (to the children) of doing so?

There's a little-known movie called Tiptoes that also asks this question. It tells the story of Carol and her boyfriend Steve who, even though they've been serious for quite some time, never seems to get around to introducing her to his family. Carol finds out that this is because her tall, handsome, buff boyfriend (played by Matthew McConaughy) is genetically a dwarf...just around the same time that she discovers she is pregnant with his child. He freaks out, not because he has a problem with little people, but because he is torn up emotionally at the thought of passing on dwarfism to his child. He's never had to deal with it himself, but has watched his brother's difficult life from the sidelines for years.

This set up brings us to the real heart of the movie. Carol has a huge decision to make about whether or not to have the baby, particularly with the baby's father not dealing with the situation well. She doesn't know anything about little people, so she embarks on a bit of a tour of discovery, to meet some little people and talk to them about how they made decisions about whether or not to have kids and why they chose one way or another. The most important answer she got (in my opinion) was both simple and profound:
This doesn't stop us from being happy.
What do you think? Is it worth taking the chance? Do you know what you'd do if you were in that situation?