Database of DNA info on every Filipino

Since we can't compel already existing Filipinos to give blood samples to keep in a DNA database, we built our database starting with those who can't speak out & don't know their rights: the newborns. And to get their parents to go thru with the newborn screening, we scare them into doing it by saying that it could prevent the death or mental retardation of the newborn.

I don't think it's a totally sucky law, RA 9288, having gone through the testing and confirmatory test and the “treatment”, which in my baby's case was a single sheet of paper with substances and foods to avoid, with the disclaimer that those listed were not confirmed causes of death for such affected people. Oh, and the list wasn't even a list, as much as it was a puzzle-like bunch of words and scientific mumbo jumbo. Or maybe it was but the printing messed it all up. We gave you the printout, go figure and “recognize [your] responsibility in promoting [your] child’s right to health and full development, within the context of responsible parenthood, by protecting your child from preventable causes of disability and death through newborn screening” (Sec 2).

I just wished that there was more support like the law promises, or seems to promise. Luckily for me, I have internet access and I can understand some of the science behind my child's condition. But what of those parents who have no background in science? It seems that this condition is common to Asians, if you would believe one website, or those of Chinese descent, if you believe another. Any which way you go, Filipinos are Asians, and a lot of Filipinos are of Chinese descent.

That's not what peeves me the most. What really bothers me is that schools don't seem to know anything about the condition my child has. I enrolled her in school for the first time this June, and had to explain to the administrator what G6PD deficiency is. If I had been a parent who didn't have a background in science, and took the sheet of paper handed out with the positive confirmatory test result and thought it was a scratch paper that the technician must've handed to me by mistake, and I didn't have internet access, how would I have told the teacher about my child's condition?

If you look at the law, the DOH and the DILG are the agencies concerned. It didn't go beyond training the health care givers. I would've wished it had covered stuff like training or at least informing teachers about such conditions. If the teacher didn't have a background in science, or worse, didn't believe you, and gave your child something harmless for other kids but deadly for your child, well, I guess we'll find out whether the stuff on the list really brings about death.

But I understand, we're short on funds, we should concentrate on the more common diseases. And that's probably more important, if you look at it with common good goggles. But why is the valid ground for refusal limited to religious beliefs (Sec 7)? As far as I know there is no belief in the Catholic faith that forbids the giving of blood for medical tests, so I had no valid ground to refuse testing. But isn't privacy entitled to protection under no less than the Constitution?

I am, of course, grateful for the information I got from the various websites, mostly from the US, that I checked out. After all, G6PD deficiency, an X-linked condition, is something that my husband MUST have, since our baby is a girl. My husband, by the way, who enjoys soy sauce like soup and blueberry cheesecake for dessert, and who didn't enjoy the benefit of the newborn screening, is alive and well. If it hadn't been for the newborn screening test, my baby would've been exposed to soy sauce, it being a common ingredient for Filipino dishes. At least now there is more creativity in the kitchen, when it comes to making yummy food even without soy sauce, which is not even a confirmed deadly substance. But I wouldn't dare dare fate.