A book that made me think a lot ...

about a number of issues (which to me, means it's a good book - that, and it had an emotional impact):

Middlesex, by Jeffrey Eugenides (2002) - reviews on about.com and salon.com

The book is the story of Calliope/Cal Stephanides, who has 5-Alpha-Reductase deficiency (no that's not a spoiler, it's in the very first paragraph of the book), so was brought up as a girl until his true condition was discovered when he was fourteen. This would be considered an intersex condition: "a person born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male".

Part of the story was about Cal's rebellion against the "typical" medical treatment, which would involve surgery for him to "look like a normal girl" (never mind that his chromosomes were XY = male). This would be the sort of treatment we learned about in medical school for such conditions, and I never really thought about it further or about the impact on the people involved. There is apparently lots of debate these days about whether such surgery is appropriate, as technically most of it would be considered cosmetic/not medically required, and it may in fact have adverse effects in terms of sexual functioning.

This made me think of similar controversies in other areas of medicine, such as cochlear implants to "cure" deafness - except that many in the deaf community don't consider it a condition that needs to be cured. Or even routine circumcision, a procedure I deliberately never learned, even though several of my colleagues offered to teach me when I used to deliver babies - I was happy to refer my patients elsewhere for this if a parent wanted it for their son, but really didn't want to do it myself. The whole idea of "what is normal?" and who gets to decide this fascinates me - at work I often see the things we do to conform to society's norms (or what we perceive as society's norms), ranging from cosmetic surgery to eating disorders to suppressing our emotionality to workaholism ... some things relatively harmless, others quite harmful.

And then today, there was this article in our local paper (had to find a link that wasn't subscriber-only), about the Bedouin tradition of marrying cousins and the genetic anomalies and rare genetic diseases that have resulted. (That was part of the story as well, Cal's family history and how the genetic condition came about). They have been doing some work in terms of prenatal diagnosis with the Bedouin in Israel and Gaza, to allow for termination of pregnancies where severe conditions are diagnosed prenatally. Technology is at a point where for some conditions we can even select a non-affected embryo (preimplantation genetic diagnosis) before in-vitro fertilization to prevent the need for later termination of the pregnancy - and the question arises as to how far we should go?

But overall, I just enjoyed the story (certainly not typical or "mainstream") and the writing in the book - riveting enough that I stayed up late to finish reading it after spending most of the afternoon and evening reading. Thanks to Chris for the recommendation :-)