Murakami on the Shore

Why I agreed to read more than 1000 pages of fiction in two weeks while swamped with deadlines and teaching responsibilities of various sorts I don’t know. I’m an idiot? Plausible. Or maybe I just can’t say no to Rosecrans Baldwin. He’s dreamy. And ridiculously talented.

As a judge in the Tournament of Books, I agreed to read 1Q84 by Haruki Murakami and The Last Brother by Nathacha Appanah. The whole review is here. But if that exceeds your Why Should I Care quotient, here is a snippet:

In the end, Murakami, the avid runner, limps across the finish line needing an IV. But his canvas is so broad, his imagination so deep and his cojones so big, you’ve got to hand it to the guy. 1Q84 is long, yes, but it presents a fully realized world, with two moons in the sky and sex, drugs, and Little People saying “ho-ho” on the ground. Tengo and Aomame are palpable, memorable characters waging existential struggles, both micro and macro. Could 1Q84 have been 400 pages shorter? Probably. But I’d say the same thing about War and Peace. And Proust.

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“And you’re ugly too”

If your doctor orders a genetic test for a single-gene disorder (often one that might be caused by variants in any of several genes), chances are that the gene or genes being tested in you have been patented. This has provoked 25 years of debate and, more recently, litigation. The most salient question of the moment is, if a patented genetic test is offered by only one lab, then what can and should a patient do?

As part of the implementation of the Leahy-Smith America Invents Act, Congress has directed the United States Patent and Trademark Office “to study effective ways to provide independent, confirming genetic diagnostic test activity where gene patents and exclusive licensing for primary genetic diagnostic tests exist.”  To that end, the USPTO has requested public comments and held public hearings in order to gather information for the genetic testing study it must submit to Congress by 16 June 2012.

All of this, of course, was precipitated by AMP v. USPTO (“The Myriad Case”), in which patients with family histories of breast cancer asserted that they have not been able to get confirmatory or “second opinion” testing because there is but a single, exclusive licensee of the patents on the most clinically important genes that predispose to hereditary breast and ovarian cancer, BRCA1 and BRCA2.

I attended the public hearing at the USPTO in Alexandria, VA on 16 February 2012.  I was so appalled by what I heard that I attended the second one in San Diego on 9 March 2012 and testified. I am still adding links to my testimony in order to submit it before public comment closes on 26 March 2012. Here is a brief excerpt on Myriad’s unwillingness to share its mutation data:

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Category: Patently obvious, political science, The scientific-industrial complex | 2 Comments

Master of all you survey

Take the survey, win a mug.

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Open season

I loves me some Soapbox. Thanks to the Nature blogs folks for letting me rant on a favorite theme:

As a graduate student, I studied the genetics of Hirschsprung disease, a congenital disorder of the nervous system in the gut (and, as I describe in my book, a disease that would affect my own family many years later). Among the things I found to be most gratifying (and yes, occasionally frustrating) in my doctoral studies were the interactions with Hirschsprung patients and families. We students had pledged our fealty to Science writ large, yes, but we weren’t studying roundworms or fruit flies. Our “subjects” (a descriptor of research participants that, in my opinion, is condescending and should be retired ASAP) were thinking feeling human beings. If we found a highly penetrant mutation in their DNA, it had the potential to alter their reproductive decisions and their lives. It meant something to them.

Read the rest here.

Category: blogody, dissemination nation, Here is a Human Bean, The scientific-industrial complex, the subject of humans | Comments Off on Open season

Phenotype of the day

hey man, nice shot!

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Good Evening, Mr. and Mrs. America…

…and all the ships at sea. It is I, the blogger who can’t be bothered to blog. My kids–and my publicist, if she weren’t so nice–would say various permutations of “LAME” and “FAIL.” And they would be right…So, let me pledge my troth that next week will bring with it actual content. Meanwhile, here’s my near-term “dillio:”

  • Wednesday January 18, 7PM: I will be at The Regulator Bookshop in beautiful Durham, NC celebrating the paperback release of Here is a Human Being. Rather than read from my book in somnambulent tones ad nauseam, I hope to show a few slides and have something more freewheeling and organically psycho-interactive. Please come…there will be no obligation and no salesman will visit your home.
  • Thursday January 19 to Sunday January 22: ScienceOnline at North Carolina State University! This is my favorite meeting evah, the only downside being the hard choices one must make when choosing between concurrent sessions. On Friday morning Paul Raeburn and I will be talking about teaching science writing in the age of social media and on Saturday afternoon I will join Kristi Holmes and Sandra Porter in a discussion about–wait for it–personal genomics. I am totally psyched…as I am every year!
  • Next week: the aforementioned “actual content.” Gory details to follow!
Category: Here is a Human Bean, Me Me Me, Personal Genomics, science journalism, Shameless pimpery | 1 Comment

The Ethication of Little Jew

We’re nothing if not incestuous around here. A few weeks ago, I had the pleasure of interviewing renegade bioethicist Carl Elliott. His brother and nemesis, Britt Elliott (aka The Ethicator),  has generously returned the favor:

BE:  I sometimes think of myself as the Steve Jobs of bioethics.  Not that I would put words in your mouth or anything.

MA: Well, I guess if the shoe fits, right? But I imagine that that’s quite a heavy burden, no?

BE: Yes, a heavy burden indeed — but not as heavy as Carl’s burden, which is being known only as the brother of the Steve Jobs of bioethics.  I’m sure he can manage that, though.

On to your book.  What is it about — genetics or something? I forget.

Read our entire not-at-all-awkward conversation here.

In other What Narcissism Means to Me news, a recent podcast I did with the fabulous folks at American Scientist is now up. (And by the way, is there a better name for a band than Ardent Octopus? I didn’t think so.)

Category: asshattery, Here is a Human Bean, Me Me Me, Personal Genomics, Shameless pimpery, You embarrass yourself | 1 Comment

“Something genetic”

About a month ago I implored you to donate to The Rare Genomics Institute, which is an organization that is not trafficking in airy-fairy promises about what genomics can do for you or your executive health program or worrying about the therapeutic misconception or possible anxiety caused by return of genetic results. No, it is trying to use large-scale DNA sequencing to help families with really sick kids get diagnoses. Among those families is the Nieders, whose three-year-old daughter Maya…

…has global developmental delays of unknown origin (probably something genetic that we haven’t found yet).  She’s been through a barrage of testing, but nothing has been figured out.  She has a normal brain MRI, normal karyotype, normal FISH, and normal microarray. She has had 2 surgeries: her adenoids were removed, and ear tubes were inserted.  Her hearing raises questions—in behavioral testing, she seems to hear normally (or close to normal), which directly contradicts a sedated ABR that said she had mild/moderate hearing loss.   She can’t speak (aside from 1 or 2 words), but communicates through making sounds, using signs, gesturing, using her iPad, and using communication boards.

Six months ago, someone put the Nieders in touch with RGI and the family began to consider the prospect of getting Maya’s exome sequenced in order to end her diagnostic odyssey. Last week the family visited Yale, which would perform the sequencing. The catch: the family had to raise the $2500 necessary to pay for it.

Yesterday I got this email from RGI staffer Naira Rezende:

I think we broke some record somewhere…This weekend, we setup her fundraising site and prepared to sequence [her and her parents’] exomes. Tuesday, the patient’s mother told the world (via blog) about this effort. We raised the funds needed to sequence 3 exomes in SIX HOURS! :)

This is what I’m talking–and getting verklempt–about.

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A conversation with writer and troublemaker Carl Elliott, Part II

Introduction and Part I here.

You have criticized your own institution, the University of Minnesota, in print, for being involved in a dubious drug trial in which a patient died. I can imagine that doing a story like that might have saved you on travel, but it probably didn’t earn you Employee of the Month. What was that like?

Carl Elliott: It’s been pretty ugly.

Can you elaborate? Had you known it would turn out this way, would you still have done it? Has anything good come out of it?

CE: Well, as far as I can tell it has made me a hated figure at the University of Minnesota, at least, in the Academic Health Center.   Not a single administrator at the university has said anything supportive or sympathetic, even in private. I’ve seen people duck in doorways when they see me coming.  Last winter, the Board of Regents turned down a request for an external investigation of the suicide.  The public affairs office has told reporters I am on a personal crusade against the Department of Psychiatry.   Last spring, the General Counsel for the AHC, Mark Rotenberg, met with the Academic Freedom and Tenure Committee to discuss whether academic freedom protects faculty members who make “factually incorrect attacks” on university research.

That said, I’ve gotten a lot of support from my colleagues in the College of Liberal Arts, and from a handful of my colleagues (not all of them) in the Center for Bioethics.  All that has been tremendously reassuring.  If not for them, I’d probably be contemplating my next move in a dimly lit room with a bottle of Jack Daniels and a revolver on the table in front of me.

Would I have done it if I had known it would turn out like this?  Sure.  The trouble with being raised in the South is that you are driven by this twisted sense of shame and honor that compels you to do things that everyone else sees as moronic, insane or self-destructive.

How did you wind up writing for The New Yorker? Did you submit something(s) over the transom? Or did they seek you out?

CE: If you bother them long enough they’ll eventually relent and publish something, just to get rid of you.

There are countless MFA grads (myself included) who will be comforted to know that…What about the initial impulse, though? At some point you must have made a conscious decision that instead of sending your work to the Moldavian Journal of Bioethics that you would try for a mainstream magazine. What prompted you to do that?

CE: Unfortunately, I was never able to get an article into the Moldavian Journal of Bioethics.  That’s a tough nut to crack.  I think you need an agent.

Back when I was imprisoned in medical school in South Carolina, looking desperately for an escape route, I used to get The American Scholar in the mail.  This was an accident.  I had no clue what the magazine was, but it had started arriving after I was elected to Phi Beta Kappa in college.  Medical school is a kind of intellectual suffocation, and I was so desperate for air that whenever The American Scholar arrived I would read it cover to cover.  It’s hard to imagine that now, but it’s true.  Joseph Epstein used to write an essay for every issue under the name Aristides, usually about something casual but abstract — like, say, name-dropping — and those essays seemed brilliant to me.  They were really smart and funny, but also unpretentious.  He made writing seem effortless.  For years I wanted to write articles like that, for readers like that, but I had no idea how to do it.  So I just kept trying and failing, until eventually I stopped failing so often.

I have to ask: what is the deal with your brother, “B. Elliott?” He runs the WCBH website and insults you regularly via blog, twitter and interview.  It’s quite hilarious, but I imagine that some people don’t get the joke–or is it a joke? And what did/does your publisher think?

CE: My brother is a very disturbed man and we can only hope he gets the medication he so desperately needs.

Actually, that website makes me laugh so violently I need medical help myself.  My publisher hates it.  They think it is juvenile and obscene.  They’re right, of course, but that’s what makes it so funny.  It’s much better than my book.

You must find yourself mentoring students who, prior to working with you, have been groomed for the sort of bioethics you disdain and who probably don’t have much in the way of investigative journalism skills. How do you go about training them?

Over the years I’ve had a handful of graduate students who seem interested in this kind of writing — by which I mean literary journalism, or narrative nonfiction — and some of those students have been really good, but for the most part, they are pretty set on the standard academic track…which doesn’t really make room for this kind of writing.

I did teach a class last year on Investigative Journalism and Bioethics (known informally as “Fear and Loathing in Bioethics.”) My co-instructor was Amy Snow Landa, a graduate student here who used to be a health journalist, and we cross-listed the course with the journalism school.

You know what bothered the traditional bioethics students the most?  Talking to actual human beings.  They wanted to write their papers without ever picking up the phone or making an appointment to interview a source.  The idea of talking to an actual human being terrified them, especially one who might not welcome their call.

Investigative journalism is a tough job.  I admire investigate reporters a lot — the real ones, I mean, not second-raters like me — but they are a special breed.  One of the books we read in our Fear and Loathing class was Poison Penmanship, a collection of essays by Jessica Mitford.  She quoted an English reporter who said that the only qualities you need for success in journalism are “a plausible manner, ratlike cunning and a little literary ability.” To which Mitford added: “plodding determination and an appetite for tracking and destroying the enemy.”

That seems about right to me.  Investigative reporting is a job where a little bit of malice goes a long way.

Category: Dear Doctor, Here is a Human Bean, mmm...dead trees, Money money money money, political science, science journalism, The scientific-industrial complex, the subject of humans | Comments Off on A conversation with writer and troublemaker Carl Elliott, Part II

A conversation with writer and troublemaker Carl Elliott, Part I

In 2009 I attended the annual meeting of the American Society for Bioethics and Humanities. The keynote speaker was Carl Elliott. I knew he was a Professor at the Center for Bioethics at the University of Minnesota and I knew he wrote for The New Yorker. I had assigned his piece on the lives of human research participants, Guinea-Pigging, to both my science writing and genomics-in-society classes. But none of that prepared me for his speech, which was eloquent, thoughtful, accusatory, profane, and above all, funny as hell. In 25 years of  academic conferences, I can’t recall hearing another talk that made me laugh until I cried.

There were hilarious vignettes from Elliott’s South Carolina childhood and jabs at “bioethicists for hire” (including many in the audience–at times it was almost as though the National Cattlemen’s Beef Association had invited a strident and acerbic member of PETA to deliver its keynote). But in between was a question: why weren’t more of us doing what he was doing? Why weren’t we investigating egregious, troubling or even benign-but-fascinating practices in medicine? Why weren’t we trying to reach bigger audiences to call attention to acute issues in bioethics? Why weren’t we, you know, talking to people?

I suspect that the answer is because most of us are neither professionally nor intestinally equipped to do it with the pointed grace and art of Carl Elliott, as evidenced by his recent book, White Coat, Black Hat: Adventures on the Dark Side of Medicine. Part I of our email conversation after the jump.

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Category: Dear Doctor, dissemination nation, mmm...dead trees, Money money money money, political science, science journalism, The scientific-industrial complex, the shoulders of giants, the subject of humans | 6 Comments