The Gene: An Intimate History by Siddhartha Mukherjee

[lightreads]

The Gene: An Intimate History

5/5. This book is a doorstop, but worth every page. It covers a huge amount of ground – from Mendel and his pea plants to Carrie Buck to Rosalind Franklin to the ethics of recombinant DNA to the just-last-year reality of actual live genetic therapies approved for use in the U.S. With several pauses along the way to discuss the author's family and the strain of hereditary illness criss-crossing it.

It's no mystery why I'm reading this now. I believe that our genes make us who we are far more strongly than many people are comfortable admitting. This has been becoming even clearer to me as the baby who owes her existence to an egg I donated grows up and, without having interacted with me more than once a year or so for her entire life, continues to be eerily like me, down to the pathologically strong terror of strangers developed at the exact same age and fading at the exact same age. (She looks like me too, but that's way less interesting). I dearly wish a lot of straight, fertile couples would have the strange experience of having to go to a sperm bank or an egg bank and pick someone out. It sharpens the mind in a way that I think is salutary, if uncomfortable. Makes you articulate what you want in a child in a cold-blooded way. Makes you state your values in people as commodities.

And, well, the other thing. I mentioned up there the newly-approved – as in less than a year ago – genetic therapy. Yeah. The first genetic therapy approved in the U.S. is for my primary disability. It may not work on me – actually, the odds are strong it will not. And the fact I haven't done much about it until now probably tells you a lot about my feelings on the matter. But I do need to know, eventually. Will I get an injection that rewrites the protein-encoding DNA in my optic nerve and improve my acuity up to 1000%? Probably not this shot, the mutation prevalence breakdowns tell me. But another shot ten years from now? Yeah, that is a real thing I'm going to have to really deal with, it seems like.

So naturally I read a book about it. One of many to come, I suspect.

Comments

[cahn]

Yuuup. I mean, straight fertile person here, but one of the things that has knocked me for a loop in being a parent are all the things about me that I thought were due to parenting and turn out, as far as I can tell, to be due to genetics, given older child replicating them to a millimeter even though I've tried to parent her very differently, and younger child not replicating them at all. Dumb things, like always beginning stories in the middle without any context. I thought that was because I learned to do that from my parents, but no, E was like this from the time she started to talk, and A wasn't.

I dearly wish a lot of straight, fertile couples would have the strange experience of having to go to a sperm bank or an egg bank and pick someone out. It sharpens the mind in a way that I think is salutary, if uncomfortable. Makes you articulate what you want in a child in a cold-blooded way. Makes you state your values in people as commodities.

It's sort of an odd question, really, because now that I've done this reproduction thing a couple of times with markedly different results, I'd put way up there things like "emotional intelligence" and "has a positive outlook on life" and "is resilient when tries something that doesn't work." Which is probably hard to figure out from a sperm/egg bank, although of course there are other things, like academic intelligence, that are easier to figure out and that I'd also want. (It is funny, though -- my parents drummed into my head pretty hard that one important aspect of finding a mate, if not the most important, involved the qualities he'd pass on to the kids, and it was always something in the back of my head when dating, so yeah, that kind of cold-blooded commodity kind of thinking is... not exactly foreign to me.)

[lightreads]

This book has some truly terrifying stories of congruences found in twins raised apart. Like the pair that had never met, but married women with the same name and named their children (and dogs!) the same thing. They lived a hundred miles apart, so okay, cultural influences, but still, yiiiiiikes.

Which is probably hard to figure out from a sperm/egg bank,

Yes. It's actually infuriating -- you can sort by astrological sign (seriously) but not, say, sexual identity. Let alone the other intangibles that would actually matter to me, which are a lot like yours. So you're left reading these weird mini essay answers. Oh, that one literally can't come up with a single funny story when prompted, pass. A friend told me she used a system which excluded any donor who said something even a little negative about his mother. That's a pretty good one. But what you're left with is narrowing the pool by something that matters only incidentally to you like height, and then picking or discarding someone based on very little information and gut. Which I suppose is not unlike reproductive sorting in the dating pool, lol.

[readerjane]

I see so many "medical miracles are just around the corner" stories that never actually come to anything, and I can't decide whether I *want* to be cynical about them or not. I mean, why rule out possibilities that could actually be beneficial? Cautious open-mindedness, right? And then I read one a week ago about gene therapy to jump-start a pancreas and my first reaction was, "how dare you dangle hope for my husband when you've only had success with monkeys and mice?" Ugh.

[lightreads]

Yes. The gene therapy approved last year that is relevant to me has been in trial for....12 years? I knew about it, vaguely. I wasn't eligible for the trials because I'd had a traumatic retinal detachment, but I'd hear something about it every year or two and think oh yeah. They're still at that? But never actually expecting anything to come of it.

And then last winter there I was, minding my own business taking a bath and listening to an economics pocast. And in passing one of the hosts mentioned this brand new, first of its kind gene therapy for a rare eye condition. And I thought what are the odds? But yeah, there it was. Only applicable to a very specific mutation that 8% of the diagnosed population has, but. It's real and it works. Apparently they picked this one rare thing because it was, for some reason beyond me, a simplified method to work out how to do this, thus clearing the way for their bigger target, hemophilia. Which they have also cured, I believe.

But yeah. It's uncomfortable knowing we are on the brink of a huge explosion in this field and not knowing how to scope what that could be. And how long it will take. And what it's limitations will be. But it's definitely coming now, that's not science fiction anymore.

[readerjane]

Hemophilia, huh? My mom has an anti-thrombin 3 deficiency: not nearly as dangerous as missing the factor 4 that hemophiliacs lack. But maybe factor 3 will be on the radar too. I should probably set up a Google alert.

[castiron]

My dad grew up in a foster home and didn't meet his older brother until he was an adult. The last time I saw them together, it struck me how similarly they acted. Yes, they did grow up in the same city (and in fact only a couple of miles apart, just enough that they went to different high schools), but it's more than a common regional accent and culture; they were similar in a way that Dad's other brother (who was in the same foster home as Dad) wasn't.

When my ex and I decided that our kid would move with ex back to Belgium (better social services for kid, whose autism is strong enough that they can't live independently), I had a brief thought that I was taking after my paternal grandmother, who left her first three kids with her parents and her last two in an orphanage; on the other hand, my marriage history is a lot tamer than hers. A year ago I met my second cousin, descendant of my grandmother's sister; the sister had also left her children to be raised by other relatives, and had married and divorced several times. Definitely makes me wonder how much of that was culture/home environment and how much was inborn temperament.

[lightreads]

There are a number of stories in this book like that. Particularly twins raised apart and in some cases not even knowing about each other. Who, in one instance, not only developed what sounds like mild OCD, but the exact same unusual behavioral tic.

[norah]

I will read any non-fiction that you give 5 stars! Also, this is SO relevant to my interests.

[norah]

Well, and then there is the throwback factor. Even when you select your genetic partner in person ... I swear to god my youngest has more in common with her mother-in-law that either me or her father.

[norah]

Ohhhh, it's by the Emperor of Maladies author. Okay, running not walking!

[lightreads]

Yes, that's how I even know about it.