Autism Awareness Month-April

Tomorrow starts the first day of Autism Awareness Month, each year the challenge is to find away to light your life up blue. For those who want to know more there is of course a Facebook page:

www.facebook.com/worldautismawarenessday

The official calender day worldwide is April 2nd.

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Hope vs. cost: the biotechnical embrace revisited

Earlier this month, I posted about the unnecessary suffering at the end of American lives that is sustained through what DelVecchio Good has called the “biotechnical embrace”: a mutually constructed ideology of hope between doctor and patient which justifies pushing experimental treatments, even when they are excruciating, expensive, and almost certain to be unsuccessful.  Both the article and the piece you read by DelVecchio Good hint at hospital economics (and incentives from biotech and pharma) as partial factors driving this ideology forward- this comes up peripherally in Cohen’s work on kidney transplant recipients as well.

Last year, Memorial Sloan-Kettering Cancer Center in New York, one of the premier cancer centers on earth, chose not to stock a ridiculously expensive medication used as a last-ditch treatment for advanced colorectal cancer.  This seems like an obvious decision, since the new drug, Zaltrap, works about as well as the much cheaper (but still overpriced) Avastin.  But the act of a major hospital rejecting an expensive drug is in fact astoundingly rare; so rare, in fact, that the doctors felt compelled to write an op-ed in the Times defending their decision- and pointing out the absurdity of a system in which cost is almost never a factor.

NPR has a quick overview of the issue.  I’m posting it for two reasons: first, the last few sentences, in which the doctors admit that if there had been even a tiny increase in Zaltrap’s efficacy over Avastin, they would have felt compelled to stock it.  And second, for the comment section, in which the ideology (and ethical mandate) of hope is questioned by patients, their families, and the medical staff who watch them suffer.

Who owns HeLa?

We have mentioned Henrietta Lacks a few times in class, the individual whose cells have done more than anyone else’s in the advancement of modern medicine.  The HeLa cell line, the first “immortal” cell line ever developed, has been used to develop the world’s most important vaccines and cancer medications, as well as spurring advances in gene mapping, cloning and IVF.  But all of this was done without her or her family’s consent, and her family was unaware of the cell line until 20 years after Lacks’s death.  Now HeLa has been sequenced, and her genetic information published- once again, without her family’s permission.  This is legal, but is it ethical?

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Rebecca Skloot, whose book brought the story of Henrietta Lacks to popular attention a few years ago, has written a nice editorial about just how problematic the publication of HeLa is, and how poorly the law has kept up with the implications of advancements in genomic technology.  If HeLa shows a predisposition toward Alzheimer’s, for example, this may have repercussions for the life insurance her descendants can get.

“Be special someplace else”

Learning the social norms of public spaces, including how to interact with the variety of people you’ll meet there, is generally part of our upbringing.  My most vivid memory from before age 5 is this: walking through the dairy aisle of a grocery store with my mom, looking around, and suddenly having her grab me and hiss that I needed to stop staring. I was baffled. Staring at what? She furiously told me, “Those people are our neighbors and they’re dwarves and it’s rude to stare.” That’s when it clicked that she was talking about a short woman and her shorter son nearby, who hadn’t previously registered in my consciousness as unusual in any way. My face burned red with confusion and embarrassment (and decades as a high self-monitor ensued).

Perhaps that’s why I found this Slate essay by the mother of an autistic teenager so interesting. She cites a couple of recent examples of public behavioral conflict involving an autistic man and a child with Down’s syndrome and writes about her own challenges. Do other patrons have a right to quiet enjoyment of a meal when there is an excited autistic child nearby?  Does the family of that autistic child have a right to have dinner in a restaurant without being hidden in the back?

Amy S.F. Lutz says this:

As anyone who’s ever parented young children knows, there are two ways of sharing: taking turns or using something together. Turn-taking seems to be particularly in vogue of late, at least when it comes to autistic people in the community: Zoos, amusement parks, bowling alleys, roller skating rinks, movie theaters and purveyors of just about any type of entertainment imaginable are setting aside time particularly for individuals with autism and their families. These are fabulous programs that allow autistic children to have fun and try new activities. They also take the pressure off parents…  Philosophically, however, it bothers me: What are my children, and my friend’s children, learning about the place of the disabled in the community?

It’s an excellent question. Let me turn it to another example that may be more personal for many of us: At the university, I have had a couple of classes with a young woman with an autism spectrum disorder. The first days were the most difficult as the professor and other students learned to expect her outbursts, lack of restraint, and her harsh tone of voice. She’s very smart and often insightful, but her behavior is disruptive and has an effect on everyone in the room. Weeks into the semester, frustrated groans and awkward laughter could still be heard from distant rows whenever she blurted out a random comment. (To their credit, both professors I observed in this situation did an excellent job of trying to manage her outbursts firmly but appreciatively and to encourage the rest of the students to participate.) What should our expectations be? Are the other students learning a free lesson in tolerance and acceptance? Does the autistic student’s right to participate in the classroom take precedence over the rights of the other students, who are paying the same tuition for the class?

These aren’t new questions, and our attitudes now may be more accepting, but I don’t think we’ve reached a consensus about what is fair — or at least best, if not fair — for everyone.

Haiti, Fukushima, Chernobyl: What do we learn from disasters?

It is now two years since the Tohoku earthquake and subsequent triple meltdown at the nuclear plant in Fukushima.  Sarah Phillips, an anthropologist who has spent most of her professional life studying Chernobyl and the Ukraine, has a very thoughtful piece on how similar the two nuclear disasters turn out to be.  It’s a long article, so here’s the tl;dr:

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“Fukushima is Chernobyl. Independent of the system (Japanese, Soviet), nuclear technology requires disregard for the public, misleading statements, and obfuscation in multiple domains (medicine, science and technology, governance). As anthropologist Hugh Gusterson notes, “The disaster at Fukushima has generated cracks in what we might call the ‘social containment vessels’ around nuclear energy—the heavily scientized discourses and assumptions that assure us nuclear reactors are safe neighbors.” Comparing the nuclear accidents at Chernobyl and Fukushima shows that “peaceful” nuclear technology is anything but.”

Fukushima

This week, in Maternowska’s Reproducing Inequities, we have also been reading about Haiti and the spectacular failures of development organizations to effect significant or lasting change for poor Haitian women.  It has now been more than three years since Haiti’s massive 2010 earthquake, and life for many Haitians is not better.  The cholera epidemic that began in the country in October 2010 continues to claim Haitian lives.  The same patterns Maternowska identifies for Haiti’s reproductive health and family planning policy have played out in the wake of Haiti’s natural and unnatural disasters: a lot of money spent very unwisely, and then a discourse that blames Haitians and “culture” for the lack of results.  We are left with the sense that Haiti, like other regions of extreme poverty, is hopelessly undevelopable, and so funding is limited to basic humanitarian interventions addressing immediate needs, rather than addressing the underlying structural factors that relegate Haiti to perpetual vulnerability to the next disaster.

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Paul Farmer and Catherine Maternowska both identify this sense of hopelessness for what it is: a disavowal, a racist cop-out, and a justification for continuing the same development strategies that fail to address the actual long-term needs of poor people, despite overwhelming evidence of their inadequacy.  The real tragedy that emerges from reading Maternowska, or following Farmer’s tremendous success in the country with his clinic and with Partners in Health, is the recognition that developing Haiti and alleviating poverty is not actually that difficult.

Mash Season 9 Episode 16: The Red/White Blues

http://gorillavid.in/blidnlmigqg8

Alternate, in case that link has issues: http://www.1channel.ch/external.php?title=MASH&url=aHR0cDovL2dvcmlsbGF2aWQuY29tL2NuYS9kY3B1eHhyc2k4OXQ=&domain=Z29yaWxsYXZpZC5jb20=&loggedin=0

(Both are gorilla but 2 separate uploads)

Start at 7:11 to play; if you have time, watch until the end as a health note finishes the episode. (Each episode is only about 23-25 minutes long) In this episode Springtime has come in Korea which means malaria. Unfortunately not everyone can take the medicine…for reasons you’ll have to see.

Still slightly confused about the outcome of the video? A medication that reacts poorly to people and communities of African and Mediterranean decent? Primaquine was created in 1946, it was tested during WWII on volunteers, soldiers, and prisoners of war. It was seen early on that those who were African-American had a hemolytic reaction to the medication, (though it was also noted there there were a few cases of Caucasion reactions also). After that doctors were given the warning not to use Primaquine or only in sparing amounts in those of African decent. It became a ‘race warning’, later by the time of the Korean war those who had Mediterranean background were included and recently those in the Middle East (Iraq and Iran) have been added to the list…. But is it a race issue? In fact it is not, what the Primaquine is reacting to is an allele called Glucose-6-Phosphate Dehydrogenase. Those with the allele have a hemolytic reaction when they use Primaquine. To make it very clear…. EVERYONE has the ability to have this allele. So why does it appear to create a race affect visually in those that have a shared community background for lineage or decent? Those who read my previous post may know where this is going…. that’s right! Cross-Protection! James V. Neel explains it in his article Are Genetic Factors Involved in Racial and Ethnic Differences in Late-Life Health?

‘The sickling alleles and the G-6-PD deficiency alleles are representatives of balanced polymorphisms. Homozygosity for the hemoglobin S allele is usually inconsistent with reproduction because the homozygotes usually die in childhood. Homozygosity for a G-6-PD deficiency allele (or hemizygosity in the case of a male) by no means confers the handicap of sickle cell anemia but must still be regarded as impairing the fitness of the homozygote. But in both cases, the alleles have a positive side, conferring resistance to malaria, and the frequency of the allele in a population is determined by a balance between positive and negative selective forces.’

Translation? Environment, environment, environment! This allele provides a protection against Malaria. So those in a community that have the allele and Malaria in their environment will see an upsurge of the allele in procreated generations because those without the allele may not to survive as well without the added protection. Non-alleles will be less likely to procreate a new generation when dead from the extra benefit of protection.  When more members of a community, line of decent, or group heritage have an allele it can make it appear that their ‘race’ may be more or less susceptible then others to things, when in fact this is a result of environment messing with allele spikes. Nor does it matter that the allele itself may be what causes a separate disease or condition. Its protection might be an unintentional side effect of the primary disease or condition or a protection mechanism against other diseases wiping out the primary disease or condition. So the appearance that Primaquine is not advised in certain ‘races’ is deceptive. The health label has since been changed to read that it is not advised in those with the Glucose-6-Phosphate Dehydrogenase allele else wise hemolytic shock may occur or those with similar conditions. For a long time though it was treated as a race issue from the naked eye when in truth the culprit was microscopic…. but universal.

Additional Readings…

Should we rage against the dying of the light?

The reading assigned for today by Mary Jo DelVecchio Good looks at the political economy and culture of hope that serve as a legitimizing ground for what she terms the “biotechnical embrace”.  She notes that even as the medical system promotes and naturalizes experimental treatments that have very low success rates, the same medical personnel that maintain public optimism are privately critiquing the practice.  Here’s an excerpt from a resident:

“Being given high doses of chemotherapy and a bone-marrow transplant is not a natural event.  Sometimes oncology in general kind of bugs me, in that it seems – especially for bone-marrow-transplant patients … I was feeling, Why are we doing this?

A recent article in the LA Times asks the same question.  Even as the rates of Medicare patients who are choosing to spend their final days at home or in hospice are going up, an increasing percentage of these patients are spending all but their final weeks undergoing invasive, expensive and painful treatments.  With the encouragement of both doctors and support groups, and an individualist and even moral discourse of “winning battles” and “never giving up”, Americans tend not to go gentle into that good night.  And yet 9 out of 10 Americans say that when the end comes, they would rather die at home, with treatments focused on comfort rather than extending their lives.

There is one group that does not seem to buy into the ideology of hope for their own terminal care: doctors.  A recent Radiolab episode explores the disparity between what we want doctors to do for us, and what they want done for themselves- see doctor’s responses below when asked what treatments they would want given a scenario of irreversible brain injury without terminal illness:

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Who are the weird?

There’s a fascinating article making the rounds of various blogs this week, which does a nice job of summarizing the interesting findings of a young group of psychologists looking at cross-cultural variation in a series of games and perceptual tests that have long been assumed to measure universal human qualities.  Over and over again, they are finding that Western subjects respond in very different ways than most people to these kinds of tests; in fact, Western subjects are outliers, even though the vast majority of our data on human behavior and psychology (96% of psychology studies) is limited to the study of Western populations.

This is not exactly news to most anthropologists (or to anyone; the paper the article is discussing came out a few years ago and was widely discussed then as well), but the article does not let the discipline off the hook, accusing the anthropological stance on cultural diversity of being incoherent in that we want to maintain two incompatible claims.  On the one hand, anthropologists extol cultural relativism as a basic principle, emphasizing that cultural differences are real and significant and need to be respected.  On the other, undergraduates come away from an anthropology class with the sense that we are also all underlyingly the same.

This strikes me as a fair critique to a limited extent, but the quandary of the anthropologist is less severe than that of those social sciences (psychology, economics) that want to assert the existence of an analytically accessible mind underlying and separable from cultural variables.  I think many of these kinds of social scientists will come away from the article shaken, but not despairing; maybe, they will reason, you have to try for cross-cultural representativeness for things like game theory, but surely not for things further along the biological end of the biocultural spectrum.  And yet we know from our course readings that this is not true either: we have seen that what seem like very biological processes, from so-called African “precocity” (Gottlieb) to “normal” menstruation patterns (Strassmann), are very different for most of the world than for the Westerners who have long been presumed to be typical.

The always incisive neuroanthropology blog has done a great job of giving an overview of the review article, as well as pointing out some of the problems inherent in the neologism WEIRD (Western, Educated, Industrialized, Rich, and Democratic), despite its catchiness.