Monday, April 04, 2005

Genetics! Where do We Stand As Christians?

I am Presbyterian (PCUSA) rather than Lutheran (ELCA) but I happened upon this amazing article and wanted to share it.

This - this - this is what reformed theology is all about. This is intelligent, thoughtful, moral, caring, and nuanced. This is why I still call myself Christian, even with all of the evil done in the name of Christianity in the world today.

Here are some of my favorite quotes from the article:

Couples like Allen and Sarah fear that their burdens are too great, too ambiguous, or too disagreeable for their friends to bear. They fear that disclosure will weaken their ties with the community of the congregation, and so they hide their situation from the friends who are most important to them.
Oh, yes, we felt like that. Paul and I have received such incredible support from our families, our church, and our friends over the past 2 years. A big thank you to everyone who has been here for us.

Moving on from supporting families, the article discusses genetic testing and screening:
Genetic testing adds increasing pressures to have a "perfectly healthy" baby. If testing is easy, abortion available, and social pressure strong, will that result in social discrimination against even mildly "imperfect" children? To take a specific case, could governmental and charitable dollars disappear for families raising children with Down’s Syndrome? [sic] Will, or should, insurance companies refuse to provide coverage for those with pre-existing "expensive genes?" Such cases of refusal have been reported.
I fear this very much. Please vote to strengthen IDEA and similar legislation whenever possible to avoid turning our society into Gattaca. Please don't use "sped" or "tard" as insults. Please raise your kids to be sensitive to people with differences.

The article goes on to explain why prenatal screening and testing can be useful for other decisions than the decision to terminate, countering the claims of many anti-abortion and disability rights activists that to avoid the above nightmare scenario, prenatal screening and testing should be eliminated:
Dr. Robert Lebel, a medical geneticist writing in an Evangelical Lutheran Church in America (ELCA) publication, notes the following: "We should combat the naive assumption that these testing methods are useful only for identifying pregnancies to be targeted for termination [abortion]. Such an assumption is a grave error because it overlooks the opportunity some families appreciate—to prepare themselves psychologically, financially, spiritually, and socially for the birth of a child with a handicap. In some few instances, it also allows for specific prenatal therapeutic efforts to be undertaken. In severe conditions, with survival impossible, it may provide the basis for "do not resuscitate" plans when delivery occurs."
Oh yes. But another Lutheran thinker quoted in the article, Hans Tiefel, is full of shit:

He asks whether it could ever be loving to abort a seriously ill pre-born, and concludes that it could not. . . . Tiefel recognizes that this view is painful, and possibly cruel for parents of genetically affected children. The medical costs and emotional burdens can seem like more than flesh and blood can bear. Nevertheless, he argues that love may well require this of both parents and the church community.

Easy for him to say. I don't see any evidence that he's ever been in this position, or has kids at all. He's also against stem cell research.

Anyway, this was an incredible article. A big thanks to the Evangelical Lutheran Church in America for publishing such a thoughtful resource for their clergy and lay community.


Jessica said...

It sounds like a great article, indeed. Do you have a link to it in its entirety?

What you said about raising children to be sensitive to those with differences made me think of my son - just two weeks ago, he was sent home with a note from his Math teacher saying that he is so helpful to an autistic student that she decided to sit them together so that D can work with him - she says that D is more apt to stay on task himself now because he knows that the autistic student needs him. I've been so proud of the way that D, for years now, has extended himself to children with disabilities that we recently had a conversation about this being a future occupation for him.

Sarahlynn said...

Jessica, neat story about D.

The title of the post itself should link to the article. It works for me . . .

Jessica said...

But of course (duh!) - thanks.

Moreena said...

Thanks for the link to the article. I have been thinking of tracking down a church for us to go to once my daughter asks to go, as I know she will (our town is a real church-going town, and she goes to preschool at a Lutheran church, so it's just a matter of time). Weird, maybe, but it's hard for me to contemplate finding a church that doesn't make me uncomfortable. Reading thoughtful articles like these makes me feel a lot better about it.

Sarahlynn said...

Moreena, I'm sympathetic to that! I don't know what would make you uncomfortable, but I've been most comfortable when visiting United Church of Christ (UCC), PCUSA, ELCA, Methodist (UMC), and Episcopalian churches.

The search is made more complicated by the fact that most of the major denominations have spin-offs with similar names but *very* different views and practices!

IME, how a particular church feels depends a lot on the clergy.

Anne said...

This post on Michael Berube's blog (long, various, opening with a discussion of Terry Shiavo) might interest you. While I tire of his self-satisfaction, I find him smart and interesting. He is a great and fierce advocate for working parents and people with Down syndrome (one of his sons has it). His wife is amazingly cool, too. Anyway, I'd be curious to know what you think of what he has to say.

Sarahlynn said...

Anne, I agree with you about Berube and am a regular reader of his blog (though I prefer his traditionally published work more). A mutual friend loaned me a signed copy of his book about Jamie (Life as we know it: a father, a family, and an exceptional child) shortly after Ellie was born.

He says it all much more intelligently and clearly than I do, but I try to say much the same things about prenatal testing, abortion, Down syndrome, and disability rights via anecdotes and informal journal-style writing.

Anne said...

Thanks. No need to put yourself down: he's a lot older and is paid to be an intellectual and even so, he ends up being confusing instead of clear on his blog.

I am glad you liked Jamie, which I haven't read. I have really liked his more polished stuff too.


sarah said...

Found your page and I see that you too jump to conclusions, an act for which you berate Hans Tiefel for; I know the man and you do not know where he comes from. He has children and comes from Nazi Germany. As an ethicist, he is concerned for all life, even those some do not see as fit to live. How can we claim to be judge over life not yet achieved and determine it to be unworthy? Even if we claim it is for the better of the unborn child, we open doors for those who see reasons for aborting anyone not "perfect" whatever that may be.

Sarahlynn said...

Sarah, I don't berate Tiefel for jumping to conclusions, but rather for deciding what women expecting a child diagnosed prenatally with serious medical problems can bear. I get pretty touchy about anybody else making major decisions like that for me.

If you read the rest of the post (and, indeed, the rest of my blog) you'll see that I'm not arguing what would be best for the unborn child. How presumptive of me that would be to determine!

Indeed, this post and the article it links to address your concern about society choosing to abort "imperfect" fetuses. I quite agree with you on that point, if not on how we should deal with it.