Friday, January 28, 2011

Approach to genetic disorders

I just read through this thread:

Surprisingly, none of the Jewish posters have weighed in. Too bad, because we could add another perspective.

Thanks to a relatively limited gene pool, certain nasty genetic diseases are more common among Jews. One of the earliest to be identified was Tay Sachs disease - a truly nasty disorder in which a child seems normal at birth, but goes downhill at around 6 months and dies before the age of 5. More info here: A carrier of the disease will be perfectly normal, but if 2 carriers have a child, there is a 25% that the child will have the disease.

One of the reasons that Tay Sachs is so well-known in the Jewish community, aside from its nastiness, is that there are widespread screening programs that started around 1971. By widespread, I mean that every Jewish teen is told to go for testing, and in very Orthodox circles, there is an organization that ensures that matchmakers don't set up 2 carriers.

I was raised hearing about this from the time that I was a kid, so I forget somethings that it's a novel idea for some. My parents actually got tested when I was newborn (I was born in 1971) - and they were told that they were carriers. It was a moment of terror for them because I was too young to show symptoms, and yet there was a 1 in 4 chance that I could have a fatal disease. With my sister, they had an amnio. My mom described it as stressful, since she hid the pregnancy until receiving the results, but less stressful that worrying about a baby having it.

I haven't seen much moral debate about this in the community. It's considered obvious that the only way to deal with the disease is by preventing it through screening. Obviously, there are no guarantees in life, and a child who doesn't have Tay Sachs could still have any number of other problems, but if you could prevent a child from suffering with a horrible disease - why wouldn't you? Thanks to the screening, cases of Tay Sachs have become exceeding rare in the Jewish community.

I've seen a bit more moral debate on the question of "what do you do with the information"? The ultra-Orthodox organization Dor Yeshorim doesn't tell those who are tested what their carrier status is, only whether they are genetically compatible with a potential mate. They have concerns that people would avoid testing due to stigma. That's truly unfortunate, because being a carrier in no way affects your life unless you happen to fall in love with another carrier. It just means that you need to tell your kids to get tested themselves.

One option that exists today that my parents didn't have is pre-implantation diagnosis. Yes, it is more expensive and involves more than having an amnio, but it also avoids the possibilities of a second trimester abortion.


Righteous Rasha has a post on Dor Yeshorim, the ultra-Orthodox anonymous testing organization. I agree that anonymous testing is far from ideal, but suppose that an imperfect option that at least prevents genetic diseases is worthwhile if the stigma would otherwise allow tragedies to occur.

Wednesday, January 26, 2011

Education and equality

I just saw this report about a mother jailed for 10 days because she gave a wrong address in order to send her children to a better school:

Why are they going after this woman?

I understand in the narrow view of things, she made a false statement.

In the broader view, though - don't we WANT to be encouraging people to strive to get a better education for themselves and their children?

How is it possible to give children of all backgrounds a fair start in life without quality schools?

Why not simply eliminate the whole idea of residency requirements for schools? In my city, local taxes no longer fund public schools, but the residency requirements still remain - unless there is a vacancy, no one outside of the school area can apply. What would happen to all schools if that changed? Would it force residents of wealthier areas to care about gang violence in bad schools? Would it force all schools to improve by introducing competition? Would it promote more diversity, and allow for more upward mobility among students from bad areas?

Wednesday, January 5, 2011

Nursing in Public

I remember getting into these debates 11 years ago. Apparently, not everyone has gotten with the program:

While it's great to see all the positive responses, some of the others have me shaking my head. So folks - here is why the right to nurse in public is a personal AND political issue:

I have never, even seen any mom who was deliberately exposing as much as she could while nursing as some sort of provocative display to every male in the vicinity.

If you see someone nursing in public, you can likely assume the following:

1. She's a mother (since wet-nurses aren't really in fashion these days).
2. She has a hungry child.
3. She is not starving that child.
4. She is feeding that child in the best way possible according to medical recommendations.
5. Since she has a baby, she is likely to be busy and tired. Really, really tired.
6. Depending on just how new the baby is, she may need to breastfeed every couple of hours, around the clock. If the baby is having a growth spurt or is sick, it could be even more often.
7. If she didn't feed the baby right away, you'd be hearing a baby screaming instead of seeing him or her eating.
8. She may have tried pumping, which can be really time-consuming, involves extra expense, and can be a logistical nightmare when you have to figure out just how long it is going to take to defrost and how long unfrozen milk can sit before it's no longer safe. She may also have babies that simply refuse to take a bottle.
9. She may find that never leaving in the house is not a practical option for living. She may need to go shopping, go to appointments and have other errands. She may also feel that never leaving the house is a good way to go batty and get post-partum depression.
10. She may have a baby, like mine, whose first sign of hunger is to scream non-stop.
11. She may have discovered that at the moment that the baby decides to scream, a magic private room doesn't suddenly appear.
12. If she lives in Canada, her car is either boiling hot, freezing cold, or in the rain/snow. It is also on the other side of the mall, or parked in a far away lot or street if she lives downtown, or she doesn't have a car.
13. She has not had a full night's sleep in a long time. Instead, she's been feeding the baby, changing a zillion diapers, bathing the baby, dealing with baby puke and leaking diapers and leaking breasts, doing laundry, and all the other things that mothers need to do.
14. She has dealt with breasts that literally seemed to blow up overnight, that become rock-hard and painful if she goes too long without nursing, that can spontaneously spring a leak, and that may have had bleeding nipples generating more pain than the birth itself.

In short, the last thing that this woman needs is anyone suggesting for a moment that she shouldn't be doing exactly what she is doing, or putting more demands on her and her baby.

A favorite line seems to be a demand to "show some consideration". I agree. Please show some consideration for that mom, who is busy and tired and above all doing her best to meet her baby's needs. You would also be showing some consideration for the baby too, who is hungry and who is far less likely to be fed in the optimal way if the mother finds that she is no longer comfortable nursing in public.

Bottom line: your issues are not her problem.

Tuesday, January 4, 2011

Facts matter!

I apologize if this sounds like a rant, but I'm sick of banging my head against my keyboard.

Facts matter, people.

Intelligent people can agree to debate and have different opinions as to the meaning of facts, but if you don't have the basic facts right in the first place, the argument fails.

So, please, pretty please, don't just make up BS.

Don't try to insist that there has never been an Orthodox rapist, anywhere, ever - and then refuse to provide any source whatsoever, saying "well, I have never heard of one and I defy you to prove me wrong". You make the statement, you back it up.

Don't quote random hate propoganda or personal websites, and expect to have it accepted as proof. It's not.

Don't make random statements that you are sure that you heard that thousands were massacred in Jenin, when the official UN report found that there were 52 Palestinian deaths, half of whom were civilians, and even the Palestinian Authority ultimately claimed that 56 Palestinians died.

Don't casually state that the Israelis are committing genocide and are as bad as the Nazis, unless you want to do some real research and compare the growth in the Palestinian population from 1967 to now with the destruction of the Jewish population in Europe from 1939 to 1945.

Don't try to wring your hands and cry about the tragic death of hundreds of boys due to routine infant circumcision, if your source of information is an article written by an anti-circumcision activist who admits that he doesn't have actual numbers but pulled out an estimate despite having no statistical or medical background that would qualify him to do so.

Don't think that you are being clever by asking rhetorical questions like "Jews don't follow these old biblical commandments like avoiding certain foods or not having sex with a woman after her period, so why should they still practice circumcision?" I may have some fun passing that post around before telling you to google "kashruth" and "mikvah" and stop being ignorant.

Don't make up BS about public political figures, even if you don't like them. You can disagree with Sarah Palin without mindlessly forwarding emails that simply cut and paste a list of commonly banned books and falsely accused her of having them removed from libraries. You can disagree with Obama's economic policies without mindless forwarding emails accusing him of being a secret Muslim extremist or questioning his place of birth. You can bring up legitimate concerns about immigration without mindlessly forwarding emails that are just plain wrong and clearly cut and paste from other sources. [Kudos to David Frum, by the way, who had the courage to stand up and tell Republicans that the attacks on Obama were wrong and counter-productive.]

If you do any of these things, I will call you on it. Please don't insult my intelligence. If you don't know something, there is no shame in admitting it, but don't spread false information. You just make yourself look like an idiot.

Be aware that when I do catch you doing this, my respect for you may be affected. I know some otherwise intelligent people who are guilty of this, and I don't look at them the same way after that. I realize that like the boy who cried wolf, I cannot trust what they say. If it just happens once, I can understand that they may have been duped, but if it happens again I really start to doubt their judgment and integrity.

And finally......

If I call you out on your BS, just admit that you were wrong.

Don't say "even if it's not exactly true, it makes you think". Yeah, it makes me think you are a moron.

Don't turn around and attack my motivations. I hate BS, and that is why I am questioning you. It's not about my feelings about Orthodox Jews, or an indication that I don't respect the lives of Palestinians or baby boys, or about partisan politics.

One more thing:

Even if you are a good-hearted person looking to promote a just cause, do a little bit of research before forwarding any email to your entire list of contacts and posting it on Facebook, especially if it contains serious allegations against a person or business that seem out of character. Otherwise, you are both spreading libel and crying wolf.