Tuesday, July 25, 2006
My genetic testing results-
I got some test results in the mail yesterday and it turns out I’m not a carrier for about half a dozen common Jewish genetic diseases. I was tested this past spring, not because I plan to procreate any time soon, but because it was going on for free at Hillel and I knew the person who came from Einstein to run the ‘clinic’. So admittedly, I didn’t do too much thinking about the results.
But the process got me wondering just how common it is for women (or men) to undergo genetic screening to see if they are carriers for disease. According to a website from Montefiore medical Center (http://www.montefiore.org/services/coe/womenshealth/prenataltesting/):
“Genetic testing is an increasingly important aspect of prenatal care. Just consider the directive released in 2003 by the American College of OBGYN and the American College of Medical Genetics, under the offices of the National Institute of Health. It mandated that every woman be informed that parents can now be tested for the cystic fibrosis gene.”
Those are strong words for NIH. If each woman is informed that parents can be tested for the cystic fibrosis gene, where do we draw the line? Do we just add to that list as we isolate genes? What about significantly less threatening genetic diseases, do we mandate that women know about those? Is it irresponsible to not inform would-be parents of the possibility that their child will have Aspbergers (for example)?
But what do we do with this information?
There is a difference between knowing that you are a carrier for a disease and actually testing an unborn child. If you test an unborn child you prepare yourself for certain possibilities, but simply testing to see if you’re a carrier doesn’t require any further action, right? And if it doesn’t, should we be mandating it?
But the process got me wondering just how common it is for women (or men) to undergo genetic screening to see if they are carriers for disease. According to a website from Montefiore medical Center (http://www.montefiore.org/services/coe/womenshealth/prenataltesting/):
“Genetic testing is an increasingly important aspect of prenatal care. Just consider the directive released in 2003 by the American College of OBGYN and the American College of Medical Genetics, under the offices of the National Institute of Health. It mandated that every woman be informed that parents can now be tested for the cystic fibrosis gene.”
Those are strong words for NIH. If each woman is informed that parents can be tested for the cystic fibrosis gene, where do we draw the line? Do we just add to that list as we isolate genes? What about significantly less threatening genetic diseases, do we mandate that women know about those? Is it irresponsible to not inform would-be parents of the possibility that their child will have Aspbergers (for example)?
But what do we do with this information?
There is a difference between knowing that you are a carrier for a disease and actually testing an unborn child. If you test an unborn child you prepare yourself for certain possibilities, but simply testing to see if you’re a carrier doesn’t require any further action, right? And if it doesn’t, should we be mandating it?
# posted by Sarah : 11:56 PM
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But if you are tested and discover that you are a carrier for a devastating genetic disorder, it may caution you to have your partner tested (especially for that disease) before conceiving. I would guess that potential parents most aware of such an opportunity are the ones who have been affected by the birth of a child with a genetic disorder. If both partners know in advance that they are carriers for a disease, they would likely insure that their fetus is tested. Alternatively, they could consider other options to become parents. It seems responsible for the medical community to inform parents of their options.
# posted by 
: 5:48 PM
: 5:48 PM
Genetic testing can also create unnecessary stress for expectant parents. Like any biomedical test, there is a certain margin of error and false positives, and parents may have to go through several tests before they definitively know whether their child has a potentially harmful genetic marker. (I know at least one couple who went through a series of tests after getting an initial positive result, which took over a month, before determining that their child was actually perfectly healthy). At that point, it can create a tragic moral dilemma for expectant parents who find out that their child may carry a fatal disease or disorder. Should expectant parents terminate a pregnancy if they find out that their child has a fatal disorder? What if the disorder is not fatal, but is debilitating (e.g. Down's Syndrome)?
I think the only thing that parental genetic testing will lead to is fetal testing, which, as ‘thisbe’ has pointed out, leads to a wide range of difficult questions. See the following article from the Times:
“The Problem with an Almost-Perfect Genetic World” (Amy Harmon, Nov 20, 2005)
While testing the parent can be the first step, it means little until you test the fetus, and I don’t think testing the fetus should ever be mandated.
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“The Problem with an Almost-Perfect Genetic World” (Amy Harmon, Nov 20, 2005)
While testing the parent can be the first step, it means little until you test the fetus, and I don’t think testing the fetus should ever be mandated.
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