Medical Econo-ethics

Two recent articles got me thinking about the interplay of economics and ethics in the field of medical research. "The Right to a Trial" is a deeply moving discussion of the ethical problems involved with allowing or refusing to allow terminally ill patients to participate in clinical trials of new disease treatments and the regulatory issues at work in the debate. I found myself torn between my desire for improved access to medical treatment and my general belief in regulation of corporations to protect people.

The second article, written by Columbia University professor Joseph Stiglitz, concerns Intellectual Property rights when it comes to medical breakthroughs. Stiglitz proposes a medical "prize system" funded by industrial nations to encourage medical innovation while keeping the cost of vital pharmaceuticals low. It's not exactly a new idea, but Stiglitz provides some specifics as to how exactly the prizes would be funded and awarded.

Medical ethics is a particularly sticky field because it regularly concerns life-or-death situations. Our general desire to see hard work rewarded is tempered by our compassion for others. It seems impossibly unfair to say "medical researchers ought to make money off their innovations at the expense of human life when patients can't afford their treatments," but it is also difficult to imagine financially rewarding Pedro Almodovar for his cultural innovations while withholding those same rewards from scientists who make consistent breakthroughs in cancer research.

Back to "The Right to a Trial" for a moment. Imagine you're 31, you have two kids under age five, and you've been diagnosed with late-stage ovarian cancer. You've tried every traditional treatment to no avail, and because you are also diabetic, you are ineligible for Phase III clinical trials for a drug that had an 80% effectiveness rate in Phase II trials. You've been given a year to live, tops. If you were willing to take chances with an experimental drug because it had a good chance (or so it appeared) to save your life, wouldn't you have trouble understanding the importance of "regulation"? On the other hand, if you're a company that has produced a promising drug with the potential to seriously lower the fatality rate of an extremely deadly strain of cancer, would you really want to risk losing FDA approval because you had to list "pancreatic failure" as a possible side-effect? And would it be worth it for the thousands of other patients who could be helped?

Soap Operas and Online Art Galleries

I'm on "vacation" for the next week, but I thought I'd share three tidbits from my readings over the last few days.

First, a shout-out to "All My Children." Yes, the soap opera. They've just written soap's first transgender character into the season, and ABC has announced that over the course of his tenure, Zarf will go from Mr. to Ms.

Secondly, the NY Times reports on the Saatchi Gallery online--an online gallery in the Chelsea sense of the term, where new artists can bring their work to the public and sell it.

Last but not least... RIP Joseph Barbera. You will be missed.

Bloggers responsible for their commenters?

From MeFi:

|AMP|#8220;Senator John McCain (R. - AZ) has introduced legislation [PDF] that would hold blogs responsible for all activity in their comments sections and user profiles. Provisions of the proposed bill include: (1) commercial websites and personal blogs "would be required to report illegal images or videos posted by their users or pay fines of up to $300,000," (2) bloggers with comment sections may face "even stiffer penalties" than ISPs, and (3) any social-networking site must take "effective measures" to remove any Web page that's "associated" with a sex offender. "Because 'social-networking site' isn't defined, it could encompass far more than just MySpace.com, Friendster and similar sites." The list could include any site that allows comments, author [sic] and personal profiles. Kevin Bankston of the Electronic Frontier Foundation notes that this proposal may be based more "on fear or political considerations rather than on the facts." "McCain's [sic] legislation could deal a serious blow to the blogosphere. Lacking resources to police their sites, many individual blogs may have to shut down open discussion."*

Rut roh. Fining bloggers up to $300,000 for the comments they inspire? Write your congressmen and congresswomen, people!


We've seen a lot of legislative proposals in the last ten years seeking to regulate the internet. I don't have a problem with requiring bloggers (or anyone else) to remove copyrighted or illegal material from their blogs, or even from their comments. I do have a problem with making bloggers responsible for content that does not originate from them. The "easy" way to solve this problem, from the blogger's perspective, would be to screen all comments, but big blogs (like Wil Wheaton's, or community blogs like MeFi or Slashdot), that's pretty much a full-time job in and of itself. Perhaps more importantly, one of the great things about unscreened comments is that users know they aren't being censored, and neither is anyone else. Furthermore, isn't $300,000 a bit excessive for a personal blog? Yikes.


Then there's the social networking/sex offender issue. Many social networking sites tout business networking as their primary functions, and even the infamous MySpace has age restrictions. The ex-sex offender issue is particularly biting: sex offenders have served their debt to society, yet they ostensibly have a high rate of recidivism (although recent studies suggest that rates of recidivism are falling). My home state of California recently passed a bill requiring high-risk sex-offenders to wear a tracking device for their entire lives after release from prison. As Lanier pointed out when we were discussing the bill during the election, a state-sponsored optional program could actually benefit former offenders, because their whereabouts would be established at all times (so if they were falsely accused, they could potentially demonstrate their innocence) and because the positioning devices may serve as a deterrent. A mandatory program, on the other hand, has the effect of punishing people who have already been punished according to their crime by violating their right to privacy.


Beyond that, it's easy enough for someone to falsify personal information and obtain an account that would not immediately identify them as a sex offender if indeed they are. Holding social networking sites responsible for viewing literally every page on their sites and knowing the identities of all sex offenders well enough to determine if a page is "associated" with them, regardless of purported identity, is absurd.


Perhaps you disagree? Comments, as always, are welcome.

The Case of the Cranky Critic

I just finished Everything Bad is Good For You by Steven Johnson. I had hoped Emergence would go further than it did, but overall, I liked the book. Everything Bad was a completely different experience.

Before I go on, I want to say that I agree with Johnson's main point: TV, video games, and other visual media aren't inherently bad for us, and they aren't growing worse with time. I concur that popular media can make you smarter, and that they have a significant effect on human sociocultural growth. In all fairness, Johnson addresses a few of my complaints in his Afterword. None of that changes the fact that reading it was like pulling teeth. Aside from the hit-you-over-the-head-until-you-like-it tone and the (I'm sure unintentionally) snarky intonations of "indeed," "to be sure," "no doubt," and "to be certain" (not to mention incessent "I think," "I suspect," and "I imagine" phrases), I have two major criticisms, and it seems I'm not alone. Dana Stevens, also known as Slate's "Surfergirl" of pop culture, said this of an excerpt printed in the New York Times before the book's release:

“Not only does Johnson fail to account for the impact of the 16 minutes' worth of commercials that interrupt any given episode of, say, 24 (a show he singles out as particularly "nutritional"), but he breezily dismisses recent controversies about that program's representation of Muslim terrorists or its implicit endorsement of torture, preferring to concentrate on how the show's formal structure teaches us to "pay attention, make inferences, track shifting social relationships." Wait a minute—isn't a fictional program's connection to real-life political events like torture and racial profiling one of the "social relationships" we should be paying attention to? 24 is the perfect example of a TV show that challenges its audience's cognitive faculties with intricate plotlines and rapid-fire information while actively discouraging them from thinking too much about the vigilante ethic it portrays. It's really good at teaching you to think … about future episodes of 24.

Johnson certainly has a point, and I do think visual media have the ability to push our cognitive boundaries...but "smart" and "good" are hardly synonymous. Heck, bombs have gotten "smarter" in the last half century. "Smarter" isn't "better" unless there's an accompanying interest in using those newly improved problem-solving skills to solve, say, the immensely complex social and environmental problems facing our world.

I'm with Stevens on the second point, too: Visual media may encourage us to seek out new challenges, but that's not always a good thing. Challenging ourselves to regularly use our problem-solving skills is one thing, but the addiction Johnson associates with constant challenges in video games is, well, addiction, and like any other it has the potential to seriously disrupt an otherwise well-organized life. If you're bored to tears by menial tasks, you'll likely have trouble starting out in the workforce, especially if you're also very good at higher-level cognitive skills. It's good to have those skills, but I'm not so sure it's good to require mental exercise at all times, largely because menial chores will always be necessary for society to function.

So I'm sorry to "Heroes" and "Smallville" for taking my Johnson-inspired frustrations out on you. Each showcases social commentary in its own way. Whether that commentary is always forward-thinking or agreeable to this particular critic is a different issue which I'll happily discuss in-depth later.

Somebody Save Me

I've been talking to my friend Gabe today while obsessing over "Smallville." Gabe's something of an expert on WWII-era superhero comics, so I asked him about the propensity of such comics to make social commentary. I knew from my dad that X-Men is a metaphor for racism, but I didn't know that much about Superman. According to Gabe, what makes Superman interesting, aside from the potential Moses/Jesus parallels, is his sense of global idealism rather than nationalistic idealism. Created at the end of the 1930s, while war was brewing in Europe, Superman intended to save the world. In fact, creators Siegel and Shuster show Superman ending World War II in an issue from 1940--before American involvement. You may even recognize a few themes pertinent to today.

Network TV currently has two superhero shows on the air, and both are blockbusters. "Smallville" chronicles Superman/Clark Kent's early life, and "Heroes" is a modern-day X-Men story where genetic mutations endow a few people from around the world with "superpowers." These powers often reflect something in the character of the hero him or herself--an invulnerable teenage cheerleader, a woman whose dueling personalities reflect the cycles of abuse perpetuated on her and her sister by their father, a helpless young woman who develops the ability to make anyone obey her, a young nurse in the shadow of his politician father and brother who can emulate the powers of any nearby hero, and a spacetime bending Japanese office-worker bored with his routine, to name a few. The supervillain of "Heroes" gains his superpowers only by killing other heroes and absorbing their strengths. At first, he seems stable. Once a researcher deems his mutation inferior, however, he embarks on a quest to destroy all the "Heroes." It is envy that leads him to destruction.

Lex Luthor of the Superman comics isn't all that different. Superman's origins are contested in various publications, but the general consensus is that a disaster (war, crazy planetary meltdown) on the planet Krypton forces scientist Jor-El and his wife Lara to send their only child, Kal-El, away. Scholars have speculated about the nature of Superman and his fathers' names in the series. Siegel and Shuster were both Jewish, and Jor-El and Kal-El are similar to Hebrew phrases meaning, respectively, "fear of God" and "voice of God." After he arrives on Earth, Kal-El is adopted by Jonathan and Martha Kent of Smallville. The name "Clark" is Martha Kent's maiden name. While Clark is still a teenager, Lex Luthor moves to Smallville. After Lex saves Clark's life by moving a kryptonite meteor out of the danger zone, Clark helps him set up a scientific laboratory. In gratitude, Lex attempts to create an antidote to kryptonite when an accident sets his lab on fire. In the process of saving Lex, Superman (superboy?) destroys his research and renders him bald. Lex becomes convinced that Superman is jealous of his scientific prowess and attempts to first outdo his good deeds through science and then ultimately turns against both Superman and humanity when his experiments go awry.

"Smallville" takes a different approach, but the story is ultimately the same: Lex and Clark are friends until Lex's jealousy takes over and he becomes a vessel for evil. Clark's high school sweetheart Lana Lang is at the center of the rift between Clark and Lex.

The main difference between the superhero comics of yore and today's versions is that the latter are stripped of their social commentary. "Smallville" has episodes that touch on contemporary problems like, say, illegal immigration, but ultimately they say nothing (in the episode in question, a single child in reunited with his mother and labor abuses are stopped, but the rest of the worker-immigrants are returned without amnesty to their countries of origin with virtually no mention). "Smallville" shows Clark taking on individuals entirely in rural Kansas. Problems are localized to the Smallville/Metropolis area, and a larger global view is never presented.

"Heroes" goes global, including Japan and India, but so far the closest it's come to social commentary is that politicians shouldn't take dirty money and cheating on your wife gets you in trouble.

When Gabe and I started talking, our conversation was about apathy, not superheroes, but contemporary representations of heroics (in TV--there are still some new comics that deal with serious issues) show that same postmodern nihilism and disregard for context. Superheroes are still around, so clearly we still like the idea of "being saved" and "good vs. evil"...but who is saving us...and from what?

'Til next time.

Like Violent Video Games? Don't Move to Germany.

A recent article from MSNBC reports that legislation is in the works in Bavaria and Lower Saxony to lock up creators, distributors, and even players of violent video games in the wake of a recent school shooting.

I'm sure I'm not alone when I say I have serious reservations about media censorship. Germany both before and after reunification in 1989 has something of a history (though it is hardly unique) when it comes to censorship. While the official German constitution (taken from the West German constitution under post-WWII occupation) includes the right to free speech, it is subject to restrictions. Many of these restrictions, published in an index of "harmful materials" established by the Bundesprüfstelle für jugendgefährdende Medien or BPjM, are similar to American restrictions. Pornography may not be distributed to youth, and materials inciting violence or instructing people on how to commit crimes are heavily regulated. Materials provoking racial hatred are also regulated.

More notably, Germany regulates historical thought relating to its role and history in WWII strictly. The 2006 World Cup brought this regulation to the forefront of public view when President Mahmoud Ahmadinejad of Iran announced his plan to attend games held in Germany (he did attend, with diplomatic immunity) and over 1000 people gathered in Nuremberg in protest.

Controversy has surrounded violent video games since their very inception; political leaders and special interest groups around the world have long sought their regulation and censorship. Germany is certainly no exception in this case, and current attempts to censor games in Germany mirror reactions in the United States after the Columbine High School shooting of 1999 where a group representing families of Columbine victims pressed charges against the creators of the video game Doom. The presiding Colorado judge dropped the case citing "social utility in expressive and imaginative forms of entertainment, even if they contain violence," but the gaming industry has long exercised a certain amount of self-censorship.

Recent studies have partially vindicated groups who claim violent video games exacerbate violent behavior. On November 28, 2006, researchers at Indiana University released a report finding that adolescents who played violent video games experienced increased emotional arousal and decreased self-control.

By the standards of the Colorado judge, the violent content and even effects of video games does not eradicate their social value. Nevertheless, many political states limit free speech when it incites violence. In my opinion, video games--even violent ones--do not intend to incite violence. Nevertheless, the Indiana U study and others like it demonstrate correlations between biological and psychological damage (not necessarily violence) and violent video games. Under Germany's "Youth Protection Law" (Jugendschutzgesetz) that seems reason enough to regulate or restrict their use, and Germany in fact already requires video games distributed within the country to be altered to limit their violent content (see the article listed in the first paragraph). But the legislation under review goes further than those restrictions to imprison players of violent video games.

The relation between violent video games and real-world violence is indirect, but it is not absent. Nevertheless, it seems absurd to imprison players on the off-chance that their game-play may cause them to commit an act of violence.

Thoughts are welcome.

The "din" of destruction

I just finished reading this article from the NY Times about an AP report (and the clamor that followed it) claiming that six Sunni worshipers were doused in kerosene and lit on fire by a group of Shiite attackers in Iraq.

I have to admit that for all my zealous pacifism, I've had trouble following many of the news details coming out of Iraq in the past few months. This quote from the article might explain why:

“And finally, as horrible as the alleged events in Hurriyah were, caches of dumped dead bodies are turning up in neighborhoods almost weekly, car bombs rip through markets and waiting lines and the death toll for American soldiers is approaching 3,000. No one is disputing those accounts.

But then, that may be partly the point. It is important to find out if this really happened in order to separate the hyperbole from the merely horrible in Iraq, so that the horrible will still have meaning. Otherwise it will all become din.

Part of the general political apathy in our generation stems, I think, from over-saturation. I used to think that referred only to the availability (or inevitability) of news information and sources, but I think that even within single publications the amount of coverage a single issue gets is enormous, and from day-to-day, very little changes.

I think this is why I've taken to long-form news magazines like New Yorker. They save the intermediary steps by collecting and analyzing the "facts" over an extended period of time (at least a week, often more), and as a result the articles identify problems, potential solutions, themes, debates, and "sides" of the issue or events at hand accordingly. But are they better?

One of the problems with long-form journalism, or any reporting that emphasizes the analytical over the immediate "factual" is that important elements that deserve attention are often dropped if they don't support the article's overall point. About two months ago, the New Yorker printed an article on the debate over string theory in contemporary physics. For weeks to follow, letters were printed in defense of string theory and its proponents, and identifying related-but-overlooked forms of physics sectarianism.

Another potential problem is, of course, bias. All journalism has bias, but in long-form journalism it's basically a necessity. Generally, I find long-form bias less disconcerting than short-form because it's marketed as "news analysis" and not just plain "news," so readers are at least informed that there's more to a New Yorker article than "the facts." There's no disguise. It becomes a problem for me, however, when I realize that I get all of some types of my news from left-wing long-form publications. The New Yorker has a "financial page" in most issues, and it's the only place I get any kind of financial news that isn't directly related to media/culture. But sometimes, as a leftist reading a notably leftist long-form publication, I start to wonder if I'm doing myself a disservice. It's not that I don't want to hear other views, it's just that I happened to read the financial page of the New Yorker once (with no prior interest in real-world economics) and I got hooked on its bite-sized-yet-long-form style.

To return to the issue of Iraq: the war itself is in a dangerous and precarious position, politically. At this point, the Iraq more seems more a symbol than a real-life event and it's used that way by all sides. John Kerry's idiotic joke seems an example of this--Kerry seemed to forget long enough to open his mouth that soldiers are people. The political right can be equally blind, by (among other things) insisting that it is the only reason many republican congressmen and women were voted out of office in the midterms.

The plethora of angry attacks and defenses of the AP report tells me the din is already there. It's not an issue of separating truth from fiction so much as separating ideology from reality. Will any more evidence to support or to refute the kerosene incident really affect how people think about it? One side will win. My guess is the other side will just ignore the after-effects.

Antiseptic technology

I'm reading Emergence by Steven Johnson right now, and it's set me thinking about how we sanitize the future. At the start of the book, Johnson talks about Jane Jacobs' theories of urban development and how neighborhoods form. But as the book progresses, he only briefly touches on demographics and associated issues of class and race. At first, I didn't think it was a problem. In fact, I barely noticed it. But as Johnson moves into what eventually starts to look like technophilia and the idealization of emergent software, some of his examples give me pause.

One of the central tenets at the heart of emergent behavior is the idea that acting locally produces global results. If enough people walking along the sidewalks of the Lower East Side interact, the sum of their interactions is a self-regulating system. What's missing from this analysis, aside from one chapter analyzing the history of how the "lower classes" have fit into theorists' understandings of emergence, is a set of social "mirror neurons"--as Johnson starts to discuss emerging emergent technologies (hee), Emergence loses a lot of its socioeconomic value and Johnson's argument gets sanitized. Johnson talks about every TV coming with TiVo (or something similar) and connecting to something like the internet to create TV "neighborhoods" based on individual and global user preferences. In the midst of this argument, he refutes the idea that TV and the internet contribute to user isolation based on the fact that the technology aids communal emergent behavior.

So what's the problem?

If you don't have money, you won't have a TiVo. The communities that could potentially form won't account for the impoverished, and entertainment will continue to alternately misrepresent, ignore, insult, and exclude the poor. While media may be tailored to certain "communities" through TiVo, the same groups who have traditionally been excluded by the top-down system of the networks will still be excluded by the bottom-up system because they won't have access to the technology required to form their own communities, and thus the impoverished (and possibly other groups, this is just the obvious one) lose what little grip they had on media solidarity.

I'm still enjoying Emergence, don't get me wrong. But I'm concerned about the blanket sanitization that today's zeitgeist chasers exhibit. Just talking about technology's potential to shape thought isn't enough. Neither new technology nor bottom-up self-organization is inherently ethical. It may be useful, but many of the social problems that were around before bottom-up technology will still exist during and after it. Focusing on the technology without moral discourse draws attention away from those problems.

Even my beloved Star Trek, which early on incorporated race, rarely explores issues of class and never concerns itself with sexual orientation. Looks to me like technology glosses over social problems rather than fixing them. Hmm.

EDIT: Here's something entertaining and mildly relevant! The blog software I use, greymatter, has quotes on just about every page you work with. In the "preview" page, this quote came up:

"The future is not something we enter. The future is something we create."—Leonard Sweet