Family Medical History: How Much Do You Want to Know?

December 7, 2012 Eileen, HepB+ 1 Comments

I have a great-grandmother, Verna, who lived to 103 years old. She tended her garden and lived in her own home until the very end, passing peacefully in her sleep. Verna is a shining star on my family medical history. My own father had debilitating arthritis as a child, as did a great uncle. Autoimmune disorders of all types are abundant. Several ancestors struggled with substance addiction. There’s breast cancer on my mother’s side of the family. We tend to have teeth that rarely get cavities and hair that goes gray by 30. But losing our hair? Hasn’t happened in generations. I have an uncle who is 6’4, a brother who is 6’5, and when I topped out at 5’3, I knew my shortness came from the petite Pittman side of the family. On the Kelley side, allergies abound and if a family reunion were held during pollen season, Kleenex could sponsor the event. All in all, it’s a mish-mash of the mortal state and most of it, I rarely think about. But it’s nice to know.

For my youngest two children, their family medical histories are total blanks. Did his grandfather die of pancreatic cancer? Did her mother have high cholesterol? Is there an inherited, hidden heart defect? Did his dad fight alcoholism or battle OCD? Did her grandmother have Alzheimer’s? I have no idea.

Technology is such that now, with some money and little saliva, you can get a genetic picture. I was intrigued and late one night, I perused the website for one of the popular DNA testing companies. I was amazed. Did you know that from a sample of spit they could predict your odds of living to 100? Or of having restless leg syndrome? Or male pattern baldness? Or obesity? Or a tendency to overeat? Or freckles? It’s like a modern-day fortune teller looking into a crystal ball. Do they see a blue eyed child in my future? Or one with curly hair? And even if it’s stuff that I already know–like that my Asian children weren’t first in line when the freckle gene was distributed, isn’t it cool to have someone (fortune teller or scientist, either one) tell us something that we already know but they found it out in a cool way (crystal ball or cheek swab, either one)?

And did you know they could test for drug response? If you were on say, an antidepressant, would you be more or less likely than average to get relief? And if it did work, would you tend to relapse? Or be prone to sexual side effects? They can tell you if you may require a lower dose of blood thinner or if you might react poorly to cholesterol-lowering medications or if you’re genetically predisposed to heroin addiction. These could be useful things to know.

But the more I read, the more I squirmed. Say my son was at a high risk for Lou Gehrig’s Disease. It’s a tragic and fatal illness, and if his genetic map leads to that, I couldn’t alter the path. Would I want to know? Would I want him to know? What if my daughter has a stronger than average tendency toward bipolar disorder? Would I overreact and spend sleepless nights worrying about her normal teenage moodiness? If my son surprises us with a 4 letter word, would I secretly rush to check his paperwork and see what it says about Tourette’s Syndrome?

There is a place for genetic research, absolutely. A family medical history is a good thing to have. But how much do I really want to know? As it turns out, not much. I know that I love my children, whether or not we share one iota of genetic code. I know that I’ll be their mom through thick and thin. Through gout or migraines, through asthma or Celiac disease, through kidney stones or lupus. And for today, that’s all I need.

One response to “Family Medical History: How Much Do You Want to Know?”

  1. Aus says:

    Oh I so hear you!! Our Korean adopted daughter at age 8 started having “these pains” – and for a while we thought nothing of it – she was always “so healthy” – and exceptional at sports and dance. But they got worse and more frequent, eventually the trips to CCHMC started, and then the nosebleeds, more trips, rule out this, that and the other thing. Abdominal Migraine – but it didn’t respond to treatment – must be in her head, a unique response to a delayed attachment thing, and on and on and on.

    A trip to a new physical therapist led to a comment – “Has she ever been screened for Ehlers-Danlos Syndrome (EDS)?” Back to CCHMC…and a genetic guy…several…but one that hit the nail on the head and brings us back to your post…

    “We know a couple things for sure. Your girl HAS EDS, type III – no doubt about it. She’ll have it all her life, it’s a gene defect that causes it. The good news is type III is the least “dangerous”, the bad news is it’s the most painful. Oh, and the pain isn’t in her head, it’s in her belly right like she says it is. If you’d like we can spend the money and do a full genetic work up, but it won’t change anything, she’ll still have EDS….” There was much more but that’s the relevent part for now.

    In the end we took a page out of your book and opted to NOT have the genetic workup – for now we just don’t need to know. If someday she thinks she wants one then we’ll have it done.

    But for now, we have the daughter we love – and like you couldn’t love any more despite the fact that we don’t have one gene in common! Oh, and we have a name for her problem – and there’s some comfort in that too…

    hugs – aus and co.

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