Angelina Jolie's Genetic Self-Ownership Is the Future of Medicine

The actress Angelina Jolie writes in The New York Times:

My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.

Only a fraction of breast cancers result from an inherited gene mutation. Those with a defect in BRCA1 have a 65 percent risk of getting it, on average.

Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy. I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex.

Welcome to the future of medicine, in which well-informed patients make decisions that even a few decades ago would have been either impossible to make (due to lack of testing or knowledge) or balked at by the medical establishment (due to reactionary ideas about human nature or bodily integrity). 

Jolie is atypical, of course, and not simply because she's a movie star and multimillionaire. She has access to forms of genetic testing that are still not widespread and relatively expensive (one report I read said her genetic markup cost about $3,000). But as Reason's Ronald Bailey has written, the sorts of information Jolie accessed are becoming cheaper to generate and will become totally commonplace absent repressive medical regulations that are unfortunately favored by the typical bioethicist. 

Somewhat related: In a blog post yesterday, Brian Doherty noted a critique of the latest installment of political scientist Corey Robin's ongoing attempt to cast libertarian economists such as F.A. Hayek and Joseph Schumpeter as defenders of a hierarchical, aristocratic social order that exists only to serve the rich. In thinking about Jolie and her privileged access to certain forms of medical technology, I'm reminded of Schumpeter's observation that "Queen Elizabeth owned silk stockings. The capitalist achievement does not typically consist in providing more silk stockings for queens but in bringing them within reach of factory girls."

So it is with genetic testing. The site 23andme.com already offers a basic genetic test "for health, disease & ancestry" that costs just $99 for a rudimentary mark-up. Assuming that the innovation in such areas isn't totally stymied in the name of faux egalitarianism (either we all get something at the same time or no one does) or in the name of protecting those of us who are too dumb to live with knowledge of our own genetic codes, expect more and more for less and less. 

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  • Live Free or Diet||

    Some great artist's work destroyed. Sigh.

  • ||

    My doctors estimated that I had an 87 percent risk of breast cancer

    Cancer or self-mutilation. What a horrible choice to have to make, though the obvious decision with those numbers seems clear.

  • Hugh Akston||

    You could always donate some of your copious mammary tissue to help her out.

  • ||

    You know, Hugh, that's a really good idea. I think I will. I assume you already did?

  • Ken Shultz||

    "She has access to forms of genetic testing that are still not widespread and relatively expensive (one report I read said her genetic markup cost about $3,000)."

    If she were more entrepreneurial and a little more forward thinking, maybe she could have charged them for the test.

    She could say, "I want all this work, and all this surgery, and some for my friends, too, and in exchange, I'll give you a right of first refusal on the license for my genetic code".

    Because someday, once our transhumanist overlords take over, doctors may be able to genetically engineer us or our children to look exactly like any given movie star. And people have already paid a lot of money for clothes and makeup just to look a little bit more like Angelina Jolie.

    There's gotta be a fat licensing fee in her genetic code somewhere. Aren't they still suing each other over who really owns Ted Williams' frozen head?

  • ||

    Did they say why it was expensive? Because the gene is patented.

  • Ken Shultz||

    Surely she can license her own likeness.

    Hell, she's been licensing her likeness (or not) ever since the Lara Croft movies, at least.

  • ||

    It's so sad to see such a young new field of human understanding go down the rent-seeking shitter so quickly.

    Hell, Myriad is actually claiming that an isolated sequence of nucleotide bases is their property.

  • Sam Grove||

    " doctors may be able to genetically engineer us or our children to look exactly like any given movie star."

    http://www.amazon.com/Dydeetown-World-
    F-Paul-Wilson/dp/0671698281

    From a review: A clone of Jean Harlow asks a private detective for help.

  • Steve G||

    I hope this isn't the future. This sort of playing the odds assumes nothing about the cause of cancer and that certain environmental factors may express or turn on those "bad genes". This is as misinterpreted as "family history of heart disease" or the so-called genetic cause of obestity.

  • The Late P Brooks||

    Hysterical self-mutilation is what I'd call it.

  • Caleb Turberville||

    No joke. I was doing some pretty in-depth reading up on BRCA1 just the other day. Then, two days later, Angelina Jolie has both of her breasts removed because she was diagnosed with the genetic mutation.

    I've got to stop Wiki-ing everything that strikes my curiosity.

  • ||

    At 87%, I guess it makes sense to do, but shit, that sucks. I don't think I would cut off my balls if I had a 13% chance of non-cancerous balls.

    So how does a double mastectomy work? Is she left with hideous scars, or can they just scoop out the innards of the breasts and leave the skin so that they can put some implants in?

  • Caleb Turberville||

    The key thing is to remove as much of the mammary tissue as possible. The integumentary could probably be left (I don't know?), but the nipples would have to go, I would think.

  • Ken Shultz||

    They often go through the nipple.

    When you sew the nipple back in, around the aureola, that way it doesn't really leave a scar.

  • Ken Shultz||

    Oh, and some people lose sensitivity after they've moved a nipple around, but most people get just as much sensitivity as they used to.

    They move them all around on reductions, especially. Otherwise, what's the point of being perky?

  • Caleb Turberville||

    http://en.wikipedia.org/wiki/Masectomy#Types (NSFW, by the way):

    Yes, indeed there is a type of mastectomy referred to as "skin-sparing."

  • ||

    Nipple-sparing/subcutaneous mastectomy: Breast tissue is removed, but the nipple-areola complex is preserved. This procedure was historically done only prophylactically or with mastecomy for benign disease over fear of increased cancer development in retained areolar ductal tissue. Recent series suggest that it may be an oncologically sound procedure for tumors not in the subareolar position.[2][3][4]

    So she still probably has nipples. That's good. I wonder if they retain sensation.

    ...That sounded more perverted than I meant it to. Wait, no, I mean less.

  • Ken Shultz||

    She's got implants, I'm sure.

    She's got the best damn implants money can buy, I'm sure, and the best damn surgeon at Cedars Sinai.

  • Loki||

    I always just kind of assumed she had implants done years ago anyway. Compare her in some of her earlier work to more recent roles. They definitely got bigger somehow.

  • ||

    That happens for some women, even without pregnancy.

  • ||

    There's a lot of detail on what exactly she did at the Times column.

  • ||

    Reading is for faggots, nicole. You, of all people, should know.

  • ||

    Good point.

  • WomSom||

    OMG she is still so so hot, would still totally bang weven with no boobies.

    www.Proxy-Anon.tk

  • ||

    It's crazy that this testing costs $3000 while whole genome sequencing has dropped to about $5500. The wikipedia says the patents start expiring in 2014, so the cost of this screening should start dropping shortly after that.

  • ||

    It'll be cool to get it done when it's cheaper. I'm kind of curious about exactly what kind of racial mutt I am and what famous kings and other monsters I'm descended from, you know?

  • ||

    That's the price for the special breast cancer gene detection. If you go to the 23andme place linked, it's $99 to find out that kind of stuff.

    I'm feeling tempted to do it for funsies, especially now that I know all you have to do is spit in a tube, not get stabbed.

  • ||

    Yeah, the information provided is interesting, I don't seem to be descended from any mythic kings though.

  • ||

    Look at that. $99 might be cheap enough even for me.

  • ||

    It's worth it, at least for curiosity's sake. You find a ton of little fun factoids about your heritage, along with your carrier status for a ton of different heritable diseases.

  • johnl||

    You can do this for around $100 now.

  • robc||

    I thought whole genome was much cheaper than that already.

    Im holding out for about $500.

  • ||

    I think the latest iterations of the technology are much cheaper, but they're just hitting market now. We should be looking at another precipitous drop in genotyping costs. That's part of the reason that 23andme has gotten so cheap. They use a limited technology that made more sense when we still were working on sorting out the human genome. That technology is rapidly hitting the end of its lifecycle.

  • ||

    This is such BS. I've submitted dozens of essays about Angelina Jolie's breasts to the NYT over the years, but do they publish them? No, but the first time she tries, BOOM!

  • Killazontherun||

    Good for you, Jolie. What good is a pretty face on a corpse, anyway.

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