Monday, March 31, 2008

Pew: State of the Media released

Pew's 2008 State of the Media has been released, and while I haven't had time to read much of the report yet, Framing Science has a fascinating and sad breakdown of cable news topic coverage that adds a new element to the discussion Sue and I have been having about illustrating and popularizing science.
Collectively, the broad range of domestic issues including the environment, education, transportation, development, religion, domestic terrorism, health care, race -- everything but immigration -- made up 13% of the time on cable (compared with 26% on network evening news). The three topics of celebrity, crime and disasters, in contrast, accounted for 24% of cable's time.

To put that into perspective, if one were to have watched five hours of cable news, one would have seen about:

* 35 minutes about campaigns and elections
* 36 minutes about the debate over U.S. foreign policy
* 26 minutes or more of crime
* 12 minutes of accidents and disasters
* 10 minutes of celebrity and entertainment

On the other hand, one would have seen:

* 1 minute and 25 seconds about the environment
* 1 minute and 22 seconds about education
* 1 minute about science and technology
* 3 minutes and 34 seconds about the economy
* 3 minutes and 46 seconds about health and health care
While my initial reaction is "well, who cares about illustrating the story when the signal is getting lost in the noise", my second reaction is to wonder if again, we're seeing a lack of content because the media types don't know how to report it. Is it a matter of lack of education, lack of visuals, lack of knowledge, or (what I fear) lack of interest?

the democratization of DNA?

Some people say it's the democratization of DNA. Others are seeing dollar signs in the double helix. And some states, like New York, the option isn't even there. But in most states, you can now pick up a DNA test for a few bucks that will answer the question: are you my daddy? The paternity test by Identigene cost around $30 in store - with another $120 in lab processing fees. But it guarantees to answer, with a 99% accuracy, whether or not someone is the father of the child in question.

It's not a legal kit, it won't hold up in court - those are also available over the counter (or at least, over the internet), and cost quite a bit more money. But people are suggesting that the use here is not necessarily to prove paternity in a court case, but to try to prevent a case from going that far to begin with. A sort of pre-court negotiation tactic, I suppose. But I wonder how effective that's really going to be? I know more than one couple with an acrimonious split where, if this kit were used to prove paternity, the retort would just be that the woman was using the DNA of the "real" father, and not the man in question; it would just feed fires rather than calm them. Perhaps calmer heads to prevail...

I just don't see this offering the peace of mind it's being advertised to offer. If there's that level of suspicion and mistrust already, is a test going to help? I suppose it might, so long as it answers the affirmative - that the child is his son. But what does it do to trust in a relationship? What are the social implications? And what does it say that Identigene is offering the kits so inexpensively because of the anticipated volume of sales?

Maybe most importantly, what happens when a test result comes in, and it's not the result you want (either way)? There's no one around to talk to, or help you work through possible conflicting emotions (or anger). There's not necessarily a cooler head to prevail, and to get one, you're probably going to have to spend the money over again, to have an actual legal and verifiably untampered sample taken and tested. Which just means spending more money in the long run.

The more I think about it, the more this seems like it's taking advantage of people's fears without any sort of positive payoff for the person involved - but it's also early Monday morning, I haven't had coffee, and I am admittedly cranky. Does anyone else have another/different take on this? Can you see a positive here that I am missing?

Ben Stein's latest entry in the culture wars: creationism

Maybe I'm out of touch, but it was news to me that Ben Stein (former Nixon speechwriter, monotone teacher in Ferris Bueller's Day Off, etc. etc.--if you watch the video below, you'll get to hear him list his many accomplishments) is a strong proponent of intelligent design.

His new film, Expelled: No Intelligence Allowed, due out next month, is positioned as an expose of the controlling, elitist, (etc.) academic establishment, its enslavement to Darwinism, and the terrible punishment that scientists who promote ID have received at its hands. I just watched the trailer, which -- no kidding -- implies that the Holocaust was the result of the theory of evolution. I find it offensive, and also slightly ominous, that Stein is comfortable using imagery of the ovens for his political purposes here. It also appears that he had no compunctions about getting scientists to talk to him under false pretenses, as PZ Myers of Pharyngula reports here--with a funny followup here.

Nipple Rings, Respect and the Undertreatment of Women's Pain

Nipple Rings, Respect and the Undertreatment of Women's Pain

My adopted home town of Lubbock, Texas was in the news this week—no we haven’t arrested the Chippendale Dancers again—this time the TSA Agents at “Lubbock International Airport” reacted like a bunch of junior high school boys when confronted with the shocking situation of a woman, Ms. Mandi Hamlin age 39, whose personal jewelry set off the metal detector. (helpful visual from Wikipedia!) Apparently this is not all that uncommon--a similar thing happened in Las Vegas to Nicole Richie. But I digress.
I can’t tell the Texas story better than Ms. Hamlin’s lawyer Gloria Allred (more about her later)
But for anyone with a slow connection, here’s how the AP recounts it:
“[Mandi] Hamlin said she was trying to board a flight from Lubbock to Dallas on Feb. 24 when she was scanned by a TSA agent after passing through a larger metal detector without problems. The female TSA agent used a handheld detector that beeped when it passed in front of Hamlin's chest, the Dallas-area resident said.
Hamlin said she told the woman she was wearing nipple piercings. The agent then called over her male colleagues, one of whom said she would have to remove the jewelry, Hamlin said.
Hamlin said she could not remove them and asked whether she could instead display her pierced breasts in private to the female agent. But several other male officers told her she could not board her flight until the jewelry was out, she said.
Hamlin was taken behind a curtain and managed to remove one bar-shaped piercing but had trouble with the second, a ring. She said the officer gave her pliers to remove the ring, a process which caused a physical pain.” .
The "For Grace" Foundation

I’ll admit my first thought on hearing about this event wasn’t about the Women’s Bioethics Blog. But as the week and the story have progressed and, the theme of lack of respect for women led me to see a connection to a conference this May called “Women in Pain: Gender Matters” by a non-profit-organization, “For Grace” whose mission is “to ensure the ethical and equal treatment of all women in pain.”

I do not know anything about the “For Grace” foundation beyond their web site, but I do know that the documented failure of the medical profession to listen to their female patients and to treat their pain adquately is, or at least should be, a core issue in bioethics and needed to be discussed in this blog.
Professor Diane Hoffman
The "For Grace" Foundations' conference caught my eye because the key note speaker, Professor Diane Hoffman of the University of Maryland Law School is someone for whom I have the highest possible respect. Professor Hoffman has done extensive research and written important articles about legal and ethical issues in pain management.
Thanks to the generosity of the University of Maryland in making their faculty's work available on-line, you can read a terrific article by Professor Hoffman and Dr. Anita Tarzian, also of the University of Maryland, entitled “ The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain” Journal of Law, Medicine and Ethics 29 (2001) 13-27.
It all Comes Back to Respect
So here’s the link with the Lubbock Nipple Ring Incident: the issue here is respect. Women’s accounts of pain are not believed, and therefore not treated, because we are not respected. The TSA Agents in Lubbock did not respect Ms. Hamlin's pain or her dignity and neither do many of the people making snide comments about her at various internet sites. It always strikes me as a cheap shot to comment on a situation where a woman is embarrassed or endangered by saying “If it had been a man in a similar situation” but here is one that warrants it. Can you imagine a man being handed a pliers and told to “get it out” under similar circumstances?

The lack of respect for women evidenced by the TSA agent’s actions didn’t stop when Ms. Hamlin left Lubbock. When I first heard the story--through a posting on the Feminist Law Professors Blog!--I got right on the internet and the first account I found was on TMZ.
The Blogosphere Chimes In to Criticize the Victim
As bizarre as the story itself was, what became most fascinating to me were the comments made by readers.

I appreciate that anonymous web comments are often brushed off as harmless. I've never thought that and have always been struck at the horrible, crude things people say about women at relatively mainstream sites. Rosie O'Donnell often points out that of all the things people could not like about her, the most common ephitat in anonymous spewing of venom is "Fat." This Nipple Ring story triggered a similar reaction. People wrote, again and again, that Ms. Allred, who, as a private attorney, has defended the civil rights of women for over 30 years, is “an old bag” and a “media whore” Many questioned what an “Old Bag” like Ms. Handlin was doing with nipple rings. Excuse me? Is John McCain an “old bag?” Is it aesthetically offensive for a woman over 25 to appear in public? Apparently so. “Old Bag” and “whore” are the crudest printable words that can be said about a woman in the English language. After the insults came the disbelief. Many asserted, despite the TSA’s admission that the facts of the event were true, that the woman was ever asked to remove her nipple ring? And even more interesting, many readers expressed disbelief that removing the rings caused Ms. Hamlin pain.
If I am expected to discount these comments as having nothing to do with what people think about women, I would like to know the neuroscience supporting a conclusion that things people say are not things they think.
Here's a little thought experiment I tried. I am following the NCAA Final Four very closely and will be upset if my team, UCONN, does not win. But, if that happens I won't think the Chinese Government has fixed the games. And since I won't think that, it is hard to imagine a circumstance under which I will say or write it. But the things people wrote both about the victim and her prominent attorney, Gloria Allred, reflected thoughts in their heads. And they are ugly thoughts.

A Long History of Treating Women Differently
And here we are back to women, pain, respect and belief. The medical profession's track record on disbelieving women's pain is extensive. There are entire diseases, such as fibromyalgia and chronic fatigue syndrome, whose existence is questioned because they appear to disproportionately affect women.

Treating men and women differently when it comes to health care is so common that it is seldom questioned. There are many examples in the field of Assisted Reproductive Technology where doctors often express views on who should and should not be a mother. For example, the California Supreme Court is currently considering whether a fertility clinic has the right to refuse its services to a lesbian woman seeking to have a baby without benefit of a husband if this violates the doctor’s religious beliefs. Is it disrespectful to ask whether there are there any doctors refusing, for religious reasons, to prescribe Viagra to unmarried men because they have religious objections to sex outside of marriage? How is this O.K.?
Twenty Years of Women Going to Medical Schools Hasn't Really Helped

Many people believed that women's health care would change dramatically when women started going to medical school in numbers equal to men. Well, yes and no. There are thousands of terrfic, empathetic female physicians We are all lucky for their existence, skill and dedication. However, if the opening of the medical profession to women was going to change attitudes and practices it would have happened already. Why hasn't it? Well, first because it is beyond unfair into fanciful to expect that the existence of women doctors is enough to change the fundamental power structure of a profession or indeed a society. Second, people learn what they are taught. Unfortunately it is not uncommon for women doctors to absorb the same prejudices as men about their women patients’ accounts of pain.
Moreover, even if every woman doctor was committed to believing women, despite everything they learn through from their mentors, few are in any positions of power. 17 of the 129 Deans of Medical Schools in the United States are women. and I suspect the numbers of women who are Chiefs of Staff in large medical centers is even lower.
(gain insight into this phenomena by reading this story about Dr. Elizabeth Nadel's withdrawal from consideration for the Deanship of Harvard Medical School because she did not want to leave her husband in Washington, DC.)

And here is more bad news. Specializing in woman’s health is not the path to status and power. As in every other field imaginable, including legal academe, women seeking advancement are highly discouraged from spending their time on fringe topics—like the health and well-being of 50% of the world's population.

In Conclusion

Please save your time and don’t remind me that women today shouldn’t “have” to be interested in women’s health (or women’s rights). Why shouldn’t a woman be just as interested in prostate cancer as breast cancer? Isn’t every patient important? You’re right, they shouldn’t have to. And who knows, maybe the past is not prologue to the future and the women graduating from school today (you know them, the ones who don’t have to worry about the right to contraception because “it’s always been there” and who don’t have to support women candidates because they are “beyond” Feminism) will make things all better. Maybe it is only a matter of time before all of these inequities are resolved through their hard work and determination. But while we’re waiting, the need is here and the time to address it is now.

Whether it is TSA agents in Lubbock or Reproductive Technology Docs in Los Angeles, women are still treated differently and there is a lot more work to do. Please do not dismiss the incident which sparked this post as irrelevant since it happened in Lubbock, Texas. Believe me, save the dust storms and the tumble weeds it is more like everywhere else here than it is different. Rather, it should remind you that the struggle to respect women as they seek health care, and live their lives, is still very much in progress and while all are welcome to join in, it is up to women to step up and advocate for change.

Jennifer Bard

Bonus: Enjoy Lubbock native Natalie Maines and the Dixie Chicks performing “Lubbock or Leave it.” Lubbock International Airport plays a prominent role in the song!

Sunday, March 30, 2008

The many faces of Wal-Mart

Tucked into yesterday's local paper was a junk-mail circular advertising Wal-Mart's new "$4 Prescriptions for Everybody" program, and my husband just spotted it on the kitchen counter. "Hey, cool," he said, "It's great they're doing that. Maybe they're not so bad."

But actually, yes. Yes, they are.

There's a decent chance you have already heard or read about Deborah Shank's being sued for reimbursement of medical expenses by her former employer, as the tale seems to have taken on a life of its own in blogworld ... but in case you haven't, here's the story from The Wall Street Journal.

Anybody out there still think the existing "system" for health care finance is working? Anyone? Maybe it depends on who you are. For example, it seems to be working pretty well for Wal-Mart ...

Laugh for the Day: Creationists vs. Angry Atheists

[Via Orac's Respectful Insolence blog] Orac comments that he can't make up his mind about this YouTube clip, whether is it's a slam on Richard Dawkins or a slam of the creationists' perceptions about Richard Dawkins. ProScience? -- I'm not so sure -- personally, I think it's slam of all credos or dogmatism and shows that neither side has a monopoly on arrogance:

But, hey, I'll take my laughs where I can get them and this is funny~ my favorite part: "If I were dyslexic, I'd even hate dog, too." :>)

Postgenderism: Transcending the Dualistic Notions

A few months, some of our colleagues over at IEET had drafted a paper about overcoming gender, about which we had blogged and which provoked some criticism. Many of our readers, in response to our poll, felt that gender should be either embraced or transcended, but very few felt that gender should be overcome. Authors Dvorsky and Hughes took said criticism to heart and revamped their paper, and came up with something more balanced -- I really think this article is so much better than the previous draft and I like the philosophically monistic, wholistic approach (dare I say, Buddhist?). The essay is forthcoming in an edited book on gender and reproductive technologies and here is the abstract:

Postgenderism is an extrapolation of ways that technology is eroding the biological, psychological and social role of gender, and an argument for why the erosion of binary gender will be liberatory. Postgenderists argue that gender is an arbitrary and unnecessary limitation on human potential, and foresee the elimination of involuntary biological and psychological gendering in the human species through the application of neurotechnology, biotechnology and reproductive technologies. Postgenderists contend that dyadic gender roles and sexual dimorphisms are generally to the detriment of individuals and society. Assisted reproduction will make it possible for individuals of any sex to reproduce in any combinations they choose, with or without “mothers” and “fathers,” and artificial wombs will make biological wombs unnecessary for reproduction. Greater biological fluidity and psychological androgyny will allow future persons to explore both masculine and feminine aspects of personality. Postgenderists do not call for the end of all gender traits, or universal androgyny, but rather that those traits become a matter of choice. [Emphasis added] Bodies and personalities in our postgender future will no longer be constrained and circumscribed by gendered traits, but enriched by their use in the palette of diverse self-expression.

Download the whole essay here in PDF form and let George and Jay know what you think!

Are you a TechnoProgressive?

Here's a fun little quiz from Sage Crossroads, with whom the WBP has partnered before:
How far will you go to live forever?

Do you envision the future as a time when your physical body will no longer be the limit to your abilities? Does the idea of living forever (or at least, living a few more years in good health) tantalize your mind? On the flip side, would you like to revert back to a simple, down to earth agrarian lifestyle? Should the invention of the wheel - or at most the horse and buggy- have been the final frontier in technological advancement? Take this quiz to find out where you stand!

These questions should unearth your inner feelings about technological advancement and its role in our future. While answering the questions, assume that cost is not a barrier and that the technology is widely available. Also, if a question asks you about living a great long time,
assume that your years will be spent happily on the shore of your favorite beach rather than in a hospital.

What's your technological tolerance?

Take the quiz here.

Friday, March 28, 2008

Popularizing science is a good thing!

Following on the heels of Kelly's post about science communications and the general public: The Amygdaloids! This is a group of scientists who also happen to be musicians. They write and perform funny, educational tunes about various aspects of brain function, including emotional regulation and memory. And that's a good thing! Check 'em out.

And so now I have to climb up on my soapbox for a minute--not that I think Kelly said the things I'm about to take issue with, but her post got me all revved up.

I wholeheartedly reject the idea that presenting scientific information in a manner that can be understood by non-scientists is (necessarily) "dumbing down." On the contrary, it takes a special set of skills to do it effectively and responsibly. And if you can make it interesting and fun, on top of that? Better yet.

I also reject the idea that the average person is just too dumb to understand complex scientific concepts (while freely admitting that there are certainly more advanced/esoteric levels of understanding that the average person can't grok without lots more training ... but, then, I would also suggest that most people don't actually need that level of understanding anyway).

Both of these positions -- "explaining = dumbing down" and "people are too dumb to get it anyway" -- tick me off, frankly. I believe that scientists have an obligation to educate the rest of us, and that shirking that duty speaks of laziness, elitism, or both. So there.

Yes, it's a problem that the American public doesn't understand science well enough to play their part in a participatory democracy where billions and billions* of dollars are spent on science. So let's do something about it! Let's stop penalizing scientists --"they can't possibly be doing cutting-edge science, or they wouldn't be mucking around with the public "-- who try to bring regular folk into the magic circle by sharing their knowledge and excitement about science. Who is science for, anyway?! Let's train scientists to articulate what they do and why it's important, so that they can make cogent arguments in favor of funding priorities and public policy, and maybe also entice youngsters into science careers.

This is what I *heart* about education: everybody wins! So why the resistance, I wonder?

edited to add this link to an xkcd cartoon that makes the point more directly. I'm with Zombie Feynman!
*with a nod to Carl Sagan, who did his best to bring way-cool science to the masses and was downgraded in the scientific community as a result.

Thursday, March 27, 2008

A novel of reverse quarantine

Finally got around to reading The Last Town on Earth, by Thomas Mullen. The novel is set in the fictional timber town of Commonwealth, Washington, during the flu outbreak of 1918*. It's the story of how a community founded on a socialist/organized labor vision decides to shut itself off from the rest of the country, in hopes of self-preservation. (Some towns actually tried this, it turns out.) I was expecting a story about quarantine, and hoping for some grist about public health ethics in the case of a pandemic, but the book actually offers more than that. It's chock-full of moral dilemmas and questions of duty, in fact. It's a quiet, beautifully written book, not a thing overdone about it.

Set against the background of the First World War, Last Town raises questions about how individuals and communities make decisions when we fear for our safety and the welfare of our loved ones. I don't want to give too much away, but the flu isn't the only threat the people of Commonwealth face. The book made me wonder where, exactly, lies the line between self-preservation and harming others, either directly or by refusing to aid them.

Want more? You can listen to NPR's Liane Hansen talk with Mullan about the book on Weekend Edition.
*That was the epidemic that killed about 100 million people worldwide, and (unusually so) it was more deadly in the healthy young and middle aged, rather than babies and elderly people. If you wanna know more about that, I recommend The Great Influenza, by John Barry, and -- for those with a shorter attention span -- Flu, by Gina Kolata.

Wednesday, March 26, 2008

illustrating science

io9 explains how the top scientific discovery of 2007 was nearly overlooked by the mass media (and thus general public) because no one could figure out how to simplify it:
For a long time, It seemed as a medical discovery that Science called "one of the greatest of 2007" might never get covered by the mainstream media because it was just too complicated. But then an enterprising journalist and artist with the Philadelphia Inquirer boldly went where no reporters dared go. Writer Tom Avril and artist Cynthia Greer figured out how to simplify this complicated discovery into a completely-accurate cartoon (above).

A researcher named Steven Reiner at University of Pennsylvania proved that the human body fights disease with two kinds of immune cells (called T-cells): some that fight the invading microbes, and some that exist just to keep a record of how to fight those microbes in the future. Those "memory" cells are what this researcher revealed, and their mysteries are still being unlocked.
Very interesting. But I have to wonder - what do we miss because people can't figure out a snazzy graphic to go with the report or story? I know when I write blog posts, I scrounge for appropriate art, sometimes creating my own and always grateful when a site like io9 takes care of it for me. Why? We're visual creatures, and I think that the art makes a story more interesting, and in the case of science, can make a complicated concept easier to understand. (I would have never passed geometry without the coloured 3D shapes we had to play with.)

Combined with wondering what we miss, I wonder at how much things have to be dumbed down in general for American mass market media consumption, and if anyone has compared science reporting in different countries to see how they vary. Do countries which have a higher level of general scientific literacy in their population have the same media reporting habits, or is their media more rigorous? Or more importantly, should we be worried that the mainstream media feels it can't even try to cover science without cutesy art?

Art in bioethics is, itself, a somewhat tricky subject. How, precisely, do you illustrate neuroethics? Informed consent? Agency? If you're talking about fMRIs, I can certainly point you to some interesting graphics - likewise for IVF, fertility, abortion. It's the abstracts where we run into potential problems, the concepts that cannot be so easily summed up in a photograph of a pregnant belly.

Are important, but less visually easy (or stunning, a la the photo of the mouse with an ear on its back) stories in bioethics being passed over because of their lack of easy illustration? And is there anything that can really be done about it?

Bringing the genome home ... but why?

This story in the Washington Post gives a decent overview of the growing number of firms out there who promise to improve our lives by giving us insight into our individual genetic profiles. Current players who offer screening include 23andme, Knome (which its founder, Harvard geneticist George Church, wishes we would pronounce "know-me"). Then there are those who claim to provide genetically-based information or advice, ranging from (your DNA is used to find you a suitable date) to Genelex (which offers a mishmash of testing options, ranging from diet advice to predictive testing for periodontal disease) to Navigenics (which claims, "your genes offer a road map to optimal health"). I'm not even going to get into the outfits that offer to trace individuals' ancestry.

Here's a fact about all these businesses: not a one of them is subject to FDA oversight. So all these claims about health benefits, etc., resulting from their services can be completely false (or at least, not based on evidence), and nothing can be done about it. If you read even a *tiny* bit of the scientific literature on genetics and "personalized medicine," you will be struck by how few experts make such claims, at least for the near term. Instead, they talk about the promise of genetics ... while acknowledging that there's an awful lot we don't know. (Along these lines, see this commentary from last week's issue of the Journal of the American Medical Association, featuring none other than the head of the National Human Genome Research Institute.) Bottom line? Given that most health conditions and risks seem to be multifactorial, involving multiple genetic factors as well as environmental influences that we don't yet understand, this stuff is a long way off.

In the meantime, though, consumers should be protected from grossly overstated or unproven claims. Whether that falls to FDA or to someone else (though the Consumer Protection Agency probably has enough work to do at the moment -- lead paint in toys, anyone?), it seems to me the Feds ought to step up on this one.

Tuesday, March 25, 2008

Brown authorizes "free vote" on embryo law

Threatened with a revolt from within his cabinet--particularly from his Roman Catholic ministers--UK Prime Minister Gordon Brown has announced that he will permit his Labour ministers and MPs a "free vote" on three ethical aspects of a proposed new law governing fertility and embryo research. The three controversial provisions would permit the creation of human/animal hybrid embryos for research; permit embryos to be tested for compatibility with a child suffering a serious medical condition, in order to facilitate the creation of "saviour siblings" who might donate organs or blood to the ailing child; and instruct physicians, when determining whether a patient is a proper candidate for IVF, to consider the need of the child for "supportive parenting," rather than for "a father," as the law currently requires. The votes of conscience will be permitted only as the various provisions are read out of committee, for inclusion in the final draft legislation. When it comes time for a vote on the entire law, Labour MPs and ministers will be "whipped" into voting with their government, even if they opposed the inclusion of some or all of the controversial provisions. A Guardian article on Brown's decision appears here. Brown's letter to his MPs, announcing the "free vote," is here.

wearing your way into the club

A little late night posting before I try to re-regulate my sleep schedule (again). I was checking my Google alerts, which are truly fabulous things I recommend to anyone, and the good Dr. McGee popped up in a blog written by a former student of his, Kipum Michael Lee. Now, before I mentioned the content of Lee's post, let me say, having no clue who this person is, I just spent an interesting half an hour browsing his professional website. He does something called interaction design, which I've never heard of, and appears to be a cool blend of design, architecture, and technology. If you have a few minutes, it's worth checking out - not just for the 12:30am and I'm tired so it's really cool, but because I think we're going to see, more and more, people moving towards these interdisciplinary fields that merge interests. Why choose something boring like philosophy, when instead you can study, say, the philosophical implications of architecture and the psychological and ethical impact that has on residents? (And while I wish I could claim credit for pulling that out of my hat, in reality a former student is studying just that, via the graduate department of architecture at his university.)

Right - I was going to focus. So Kip has a blog. Kip mentioned his former Penn professor (McGee), as well as praise for their ethics curriculum, and that brought it to my mailbox. What was Kip blogging about? It seems the nightclub Baja Beach (two European locations) has decided to forgo VIP cards and instead has gone with VIP RFID chips. They have the RFID tag implanted and it serves as their access to the club, as well as payment for their drinks. Because they are a VIP, it's free club entrance for life, free access to the VIP lounge, and can order their drinks all night long, to have the cost of drinks subtracted from their bank account (linked to the RFID tag) at the end of the night. In addition to bank account information, the tag apparently includes a picture for identification, as well as full name. You can see a full interview with Conrad Chase here, including a rough count of numbers:

Chase considers this something unique, like a tattoo or body piercing - just the next step.

So Kip asks a very typical question, which is not "can we do this" (obviously, we can), but "should we do this"? He raises the point that people with the technology to make things happen do need to be the ones who lead the discussion in the ethical applications of the technology, and then wanders off into a consideration of what it means to be human. Now as something of a devotee of both DIY Biotech and Donna Haraway's A Cyborg Manifesto (warning: postmodern feminist content at that link!), I don't fear the cyborg - I embrace it, and think in many ways we are already there. I do, however, think there are questions to be asked about this RFID implantation technology.

First, and foremost, I don't believe Chase's claims that the information is not accessible outside of the club. There is something on the RFID tag that is being read every time they walk in - something that identifies them. Now it might be that the credit card information of the patrons is left on an in-house server and the RFID tag only provides a number to correspond with the identifying number in that server database, but there is something linking the RFID tag and the credit card to that person. Likewise, there's something on the chip allowing a computer to pull up the person's name and face as they walk in the door.

Privacy advocates are understandably concerned about this - for maybe a couple of hundred dollars, I can easily build a scanner that would allow me to pick up the RFID signals being broadcast from any of these implanted chips. Even if I had to sit in the club itself, to have access to the chips and the servers housing the desired data (names, credit card numbers - assuming none are stored locally), it would be possible to do - and walk out with enough information to have an online shopping spree or three. Identity theft becoming one step easier.

But admittedly, I don't think the nightclub crowd will ever grow large enough that it'd be a worthwhile (and illegal) practice to pursue. Instead, I worry more about the broader social implications. As anyone who is familiar with social networking theory knows (or has read Malcolm Gladwell's book The Tipping Point, trends often move into social acceptance by first beginning on the edges, in a club or other "scene". Once adopted by someone who has social capital in the larger group, whatever was edgy and new suddenly explodes into mass acceptance and popularity. Tattoos, piercings, clothing, all sorts of trends - and what happens when the trend moves to RFID tags that broadcast information to anyone who's listening? Your MySpace, Facebook, homepage, LiveJournal, blog, email, full name, school, gender, sexual preference - any of the information that people willingly put on these social network sites, suddenly on a chip and broadcast not to the internet at large, but the small world in their immediate surroundings.

Then what?

It's an interesting question, reaching beyond the idea of RFID tags to track children, pets, or your medical data (other currently used applications of the technology). What do you think - the future, or simply overblown fears?

Monday, March 24, 2008

A Pregnant Man Speaks

[Hat Tip to Jay Hughes] "My decision to bear a child as a transgender male has been met with discrimination and outright derision by health care professionals." From Alternet, a story from an individual who is making maximum use of his bodily potential:

"To our neighbors, my wife, Nancy, and I don't appear in the least unusual. To those in the quiet Oregon community where we live, we are viewed just as we are -- a happy couple deeply in love. Our desire to work hard, buy our first home, and start a family was nothing out of the ordinary. That is, until we decided that I would carry our child.

I am transgender, legally male, and legally married to Nancy. Unlike those in same-sex marriages, domestic partnerships, or civil unions, Nancy and I are afforded the more than 1,100 federal rights of marriage. Sterilization is not a requirement for sex reassignment, so I decided to have chest reconstruction and testosterone therapy but kept my reproductive rights. Wanting to have a biological child is neither a male nor female desire, but a human desire.

Ten years ago, when Nancy and I became a couple, the idea of us having a child was more dream than plan. I always wanted to have children. However, due to severe endometriosis 20 years ago, Nancy had to undergo a hysterectomy and is unable to carry a child..."

Full access to the rest of the story here.

Bestill My Beating Heart

Perhaps not the best centerpiece for the next family gathering (unless your family is like mine, in which case it'll be a competition to see who can get the display open first to see how the heart actually works...), but a cool piece nonetheless, created by artist Billy Chasen for the American Heart Association's 2008 Heart of New York Gala.

Billy has some other cool work worth browsing, too, including an exploded iPod set in resin that still works, and a marvelous and rather mindboggling piece called Weight of Words. He also has an interesting blog that covers ground from social commentary to art (which you might argue are one and the same).

PatientsLikeMe -- a new paradigm?

Interesting story in Sunday's NYT Magazine. It's about a new website,, that goes beyond the usual online disease support groups to actual data collection. Currently offering communities for amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), multiple sclerosis (MS), HIV, "mood," and Parkinson's, the site gathers data on treatments and side effects and turns it into aggregate data that users can use to see how their health status, symptoms, and treatment plans compare with those of others. The company was named a Top Health IT Innovator last year; has named them one of "the next disruptors," the 15 companies that will change the world.

More than being just a "support-plus" site, though, PatientsLikeMe could have some important implications for the way health care works. First, and most obviously, it puts patients in a much more active role--and not just in terms of adhering to their doctor's instructions, but in investigating whether their prescribed regimen could be improved. Second, it could be a parallel track to current ways of doing research: outside academia, outside clinical trials, bodies of data being built up. There's already a DIY trial on lithium for ALS going on among members. One key difference here is that the subjective data patients consider salient could be different from, and not included in, existing study designs. Third, PatientsLikeMe is a for-profit company ... it's seeing pharmaceutical companies as its financial lifeblood, which raises the usual privacy (etc.) concerns.

Overall, the model could challenge our current ideas of who does what in health care; the validity of data from outside the research establishment; how IT and the internet can better serve health needs -- beyond just transferring existing processes from paper to electronic media; and the need to protect personal health information and whether the general public is, or should be, afraid of this kind of radical openness ... lots to think about.

Sunday, March 23, 2008

SIGMA More Than SciFi

I've heard rumours of a science fiction writers group that advises national/homeland security officials for years, but this is the first time I've actual confirmation of the group, called SIGMA. (Of course it's called SIGMA. They're science fiction authors, they're going to have a cool name.)

SIGMA is apparently a loosely organized group of around 24 authors who advise Department of Homeland Security Undersecretary Jay Cohen, head of the science and technology directorate. Aside from Cohen simply liking their ideas, this makes sense - science fiction often becomes science fact, not just because the authors inspire the people who become scientists (show me someone at NASA right now who wasn't a Star Trek fan growing up), but because they seem to have a knack for prognostication: the cell phone, cyborg, robot, MRI and CT scans, even the very idea of the internet itself, can all be traced back to science fiction. And the same can be said for the biological: I've mentioned Frank Herbet's The White Plague here before, and think it's still one of the most scarily accurate visions of what DIY bioterrorism will end up looking like.

Given this, it's with extreme disappointment that I read about the latest SIGMA offering, which comes from Larry Niven, best known for Lucifer's Hammer and his Ringworld books. Niven's suggestion is, and I'm just going to quote it, to
spread rumors in Spanish within the Latino community that emergency rooms are killing patients in order to harvest their organs for transplants.
Niven goes on to acknowledge, after his sometimes-writing partner and fellow SIGMA member Jerry Pournelle pointed out how politically incorrect the idea is, that while it might not be possible to implement, it would work, and that
"The problem [of hospitals going broke] is hugely exaggerated by illegal aliens who aren’t going to pay for anything anyway.
Not that I think it's necessary, but I'd like to just go on record saying that this is by far one of the stupidest ideas I've heard in a while (and I've spent most of the day reading about bad romance novel tropes, so that's really saying something), and that not only would it spectacularly fail in its intent, it would have several other major impacts on social health as a whole:
  1. It's not just illegal immigrants who speak Spanish. Put that rumour out there and it's going to fly around Spanish speaking communities and right into the English speaking community, and do nothing but reinforce the fears that doctors are evil, and willing to kill people for their organs. We have doctors being stupid all by themselves, and don't need the help of rumours to feed the persistent social fear that if you're an organ donor a medical team won't work nearly as hard to save your life.

  2. Public health. If we discourage people from being treated for their illnesses, we're going to have a public health nightmare on our hand, where people are not being treated for common problems, and those common problems will spread through the community. It might not sound bad until you contemplate being one of the many this year who came down with the hellflu - imagine that being a continual concern, or virulent strep throat, not to mention things like whooping cough, meningitis... the list goes on. It would be a health nightmare. And frankly, I don't know about the rest of you, but I have enough of those just knowing what I do about bioterrorism - I don't need any help not finding sleep, I do well enough on my own.

I remain grateful that other science fiction authors did speak up to tell Niven it was a bad idea, and only wish he'd never mentioned it in the first place.

On the, I don't want to say plus side, but other side of the coin, Pournelle spoke a bit about advances in security moving us more towards a republic. I don't know that I agree with him, but the ideas are interesting, nonetheless:
Pournelle said that once mobile phone technology and the devices tacked on them to take pictures and record video become more ubiquitous, then ordinary citizens will be empowered to take security into their own hands — a prediction some have said already has come to pass.

“My guess is we won’t need quite so many paid agents of the state to do that for us, which means maybe we can try being a republic instead of an incompetent empire,” he said, then railed against the Transportation Security Administration for treating passengers like “subjects” rather than “citizens.”

-Kelly, who thinks she ought to get cookies for resisting the urge to go the route of the gripping hand in this post

Saturday, March 22, 2008

How many organs do we really need?

The Washington Post reports that up to a third of the people on the national transplant list are ineligible for transplant. Why this matters (besides the logistical inefficiencies and delays it could entail): because reports based on a "padded" list would tend to overstate the need for organ donations. As the WaPo story notes, this is bad PR for the transplant world (and for UNOS, the United Network for Organ Sharing, which oversees the allocation of donor organs in the US, in particular)... and bad timing, too, given recent news coverage of the California surgeon accused of hastening a patient's death in order to harvest his organs for donation.

Friday, March 21, 2008

Synecdoche, New York

Few film writers get quite the reaction, at least from my community of peers (philosophers and bioethicists) as Charlie Kaufman. There's probably no small irony in the fact that media-focused me had actually seen none of his movies. Even then, I know that they're an impressive list: Being John Malkovich, Human Nature, Adaptation, Confessions of a Dangerous Mind, Eternal Sunshine of the Spotless Mind. Most of these are loved and beloved by philosophers who deconstruct everything they watch, and have found their way into most friends' classrooms. (I know this because when I mention my interest in how we use media to teach, they inevitably will mention showing one of these films, or GATTACA.) His movies almost always deal with neuro-something, be it neuroscience, exceptionalism, fiction, fantasy or fact. His newest movie, Synecdoche, New York, is no exception.

The incredibly detailed imdb profile for the movie tells us
Theater director Caden Cotard (Philip Seymour Hoffman) is mounting a new play. Fresh off of a successful production of Death of a Salesman, he has traded in the suburban blue-hairs and regional theater of Schenectady for the cultured audiences and bright footlights of Broadway. Armed with a MacArthur grant and determined to create a piece of brutal realism and honesty, something into which he can put his whole self, he gathers an ensemble cast into a warehouse in Manhattan's theater district. He directs them in a celebration of the mundane, instructing each to live out their constructed lives in a small mockup of the city outside. As the city inside the warehouse grows, Caden's own life veers wildly off the tracks. The shadow of his ex-wife Adele (Catherine Keener), a celebrated painter who left him years ago for Germany's art scene, sneers at him from every corner. Somewhere in Berlin, his daughter Olive is growing up under the questionable guidance of Adele's friend, Maria (Jennifer Jason Leigh). He's helplessly driving his marriage to actress Claire (Michelle Williams) into the ground. Sammy Barnathan (Tom Noonan), the actor Caden has hired to play himself within the play, is a bit too perfect for the part, and is making it difficult for Caden to revive his relationship with the alluringly candid Hazel (Samantha Morton). Meanwhile, his therapist, Madeline Gravis (Hope Davis), is better at plugging her best-seller than she is at counseling him. His is second daughter, Ariel, is retarded. And a mysterious condition is systematically shutting down each of his autonomic functions, one by one. As the years rapidly pass, Caden buries himself deeper into his masterpiece. Populating the cast and crew with doppelgangers, he steadily blurs the line between the world of the play and that of his own deteriorating reality. As he pushes the limits of his relationships, both personally and professionally, a change in creative direction arrives in Millicent Weems, a celebrated theater actress who may offer Caden the break he needs. By seamlessly blending together subjective point-of-views with traditional narrative structures, writer/director Charlie Kaufman has created a world of superbly unsteady footing. His richly developed cast of characters flutter between moments of warm intimacy and frightful insecurity, creating a script that brings to life all the complex and beautiful nuances of shared life and artistic creation. Synecdoche, New York is as its definition states: a part of the whole or the whole used for the part, the general for the specific, the specific for the general.
It sounds like, in addition to the continual theme in his movies of places becoming states of (altered) mind, Kaufman can add neurotourism to the list of neuro-concepts at the core of his movies.

From all descriptions, this sounds like another movie that will make many people's teaching arsenal, so it should be interesting to see what the reaction is when it comes out. I haven't seen a release date yet, just "2008", but I suspect we should be seeing it soon (those of us living in the Capital Region of New York State sooner than most, perhaps, given that the movie starts out set in local city Schenectady). Someone go see this, will ya, and let us know how it is? (I'd offer, but I'm the first to admit my movie-going habits are awful.)

HHS Secretary challenges ACOG conscience guidelines

In November 2007, the American College of Obstetrics and Gynecology (ACOG) Committee on Ethics issued new ethics guidelines on "the limits of conscientious refusal in reproductive medicine." The guidelines state that conscientious refusals -- that is, a provider's denying a patient requested services (such as contraceptives or abortion) because of a personal moral objection -- "should be accommodated only if the primary duty to the patient can be fulfilled." In ACOG's view, refusals that impose the provider's religious or moral beliefs on the patient, negatively affect the patient's health, reinforce negative social or racial stereotypes, or are based on scientifically invalid information "should be limited." Patients are to be provided with advance notice of the provider's views, so as not to be caught unawares in a crisis; and if the provider decides to refuse to provide requested services, he or she is obligated to provide a timely referral to another provider. Finally, providers in areas without such referral availability should either provide the services requested (against their own commitments) or find another place to work.

This week, in a letter to Norman Gant, Executive Director of the American Board of Obstetrics and Gynecology, HHS Secretary Mike Leavitt suggested that the guidelines and any punitive actions ABOG might take are discriminatory and may conflict with existing Federal law. You can also hear the story on NPR's Morning Edition.

Photo credit

Thursday, March 20, 2008

Legalizing The Right To Die

Chantal Sebire

This news, out of France, was gut-wrenching to read--even more so when you view the above before and after photos.

It is the story of 52-year old Chantal Sebire, a teacher, mother of 3 and stricken cancer-patient; who asked a French court for the right to end her life, by means of physician-assisted euthanasia. She wanted to finally end the 8 years of pain and agony she'd endured, caused by the cancer that had ravaged her with horrific facial disfiguring tumors. That court denied her assisted-suicide appeal, and Sebire was found dead just two days later, having taken her own life. However, authorities are labeling her death "suspicious."

According to reports, Sebire suffered from esthesioneuroblastoma, a rare, incurable--terminal form of cancer--that attacks the nasal and sinus passages with painful, aggressive and disfiguring tumors. Sebire's tumors distorted her face and caused her eyes to bulge. She also described the pain as excruciating, the type of pain that drugs were totally ineffective at relieving.

French law only permits what is described as passive euthanasia--meaning the removal of feeding and hydration tubes from a comatose patient. It does not allow physician-assisted or active euthanasia. Sabire's attorney tried unsuccessfully to convince a French court that it was "barbaric" to put her through the ordeal of dying slowly in either a natural or an artificially induced coma, that could take up to as long as two weeks.

Sabire's case drew the attention of those on both sides of the euthanasia debate, across the nation in France. The public debate was heightened when it was learned that Sebire, who had also taken her appeal to French President Nicolas Sarkozy, was dead.

A heartbreaking look at where and how the laws of ethics are applied--and who benefits in the end.

Read the full CNN article here.
Also see this from

Tainted Drugs

For the sake of people susceptible to earworms everywhere, I won't actually parody the Soft Cell song further than using it as a title here. And as alliterative and 80s-referential as the title is, it's also accurate: in recent weeks, almost two dozen people have died, and their deaths have been linked to contaminated heparin. This morning, the contamination (hypersulfated chondroitin sulfate) was announced, as was the fact that the contamination happened somewhere in China. Because hypersulfated chondroitin sulfate mimics heparin in standard safety tests, it looks likely that the contamination was intentional, likely done by someone trying to either cut costs or boost profits somewhere along the production line.

Congress is, of course, clamouring for action, and the FDA is defending itself, saying it's chronically undermanned and cannot realistically fulfill its broadranging mandate. The same exact reactions we saw in 1999, when contaminated antibiotics from China were linked to almost as many deaths. And since then, China has grown in exports, while the FDA has remained virtually stagnant in the number of inspections; latest numbers indicate the US imports almost a quarter of its medications from China, and only 6% are inspected by the FDA.

With this latest tainted drugs scandal, the Senate has passed a 20% increase in budget for the FDA, but realistically, when the FDA is admitting that they are violating their own policies, suffering from poor management, and whatever other excuse it can pull out of its hat'o'excuses, it seems likely that the additional $375 million is just going to be a bandaid over a much greater problem: the need to reorganize the FDA.

Connecticut Democratic Representative Rosa DeLauro joins me on the skeptic train, saying that she doesn't "want to throw money at an agency that doesn’t have the infrastructure to carry out its mission.” Going a step further than I've actually said, she also notes that top agency officials are incompetent, and the only way any genuine change will happen is a completely new administration for the agency.

News of contaminants from China is not new - this time around, it was heparin. It's been antibiotics in the past. A year ago, dozens of people lost beloved pets to contaminated pet food. Our children's toys have been recalled because of lead and other contaminants. There are two trends here, that cannot be ignored: the FDA is unable to protect the American public, and there is rampant and dangerous corruption in China that does more than just hurt its own population, it affects us all. We, as a people, need to step up and stop accepting the excuses of the FDA and demand reform - and we need to demand a very different sort of relationship with China and the goods we import from them.

Tuesday, March 18, 2008

Paging Dr. Welby

I used to wish I'd been good enough at math and science to go to medical school. Not any more. See, I'd have wanted to take care of whole families, the range of their problems, over a long time (until one of us died or moved away, I guess). Now I'm all grown up, and I know some primary-care docs who are willing to share something of what their professional lives are like ... and I am glad I didn't go that route. (Though I still resent Mr. Savinelli for saying that girls just aren't good at math, which has played a way bigger role in my life than it probably should.)

Anyway: what brings me here today is yet another report of how the best and brightest medical students are choosing specialties that are as far away from primary care -- and, not incidentally, from sick people -- as they can. This article in the NYT highlights the competition to get into dermatology and plastic surgery, which are apparently the current "it" specialties. Good hours, patients who can pay, and few patients dying on you. Pretty sweet.

Social justice issues? Well, we the taxpayers pay for the bulk of medical education in this country. Unfortunately, we're not turning out anywhere near the number of GPs we need ... especially as the population grays. Also, while most of us probably wouldn't begrudge the desire for a normal family life, isn't it in the nature of the professions to put your clients first? If a career in medicine is primarily about money and status, not caring for sick people, what does that mean for the profession? And what does it mean for the rest of us?

A Quarter of Teenage Girls Test Positive For STDs

I'm just going to sit here and sip my coffee and let that title, and that statistic, sink in for a moment. A quarter of teenage girls test positive for sexually transmitted diseases. Go ahead and ponder it, I'll be here when you're done. Surely, you're thinking, it's not that bad! This must be sensationalistic reporting, or perhaps a matter of mistaking statistics or numbers or...

Okay, I admit. I stretched the truth a smidge to get the alarming title. In reality, the first national study of four common sexually transmitted diseases (chlamydia, HPV, trichomoniasis, and genital herpes) found that one in four teenage girls are infected with at least one of these diseases.

Oh. Clarifying that didn't really make it any better, did it?

Let's look at the numbers before we talk further, shall we? Always good to have those in front of us, whenever talking about straight up statistical analysis. According to the New York Times,
838 participants in the study were chosen at random with standard statistical techniques. Of the women asked, 96 percent agreed to submit vaginal swabs for testing. Extrapolating from the findings, 3.2 million teenage women were infected with at least one of the four diseases [emphasis added]. Because the new survey was based on direct testing, it was more reliable than analyses derived from data that doctors and clinics sent to the diseases center through state and local health departments.

To say that this suggests abstinence-only education is a complete and utter failure is, I think, a healthy understatement at best. And the numbers suggest something else, as well: abstinence-only education also hits minority communities harder, doing more damage, than the white communities. In this particular study, nearly half of the 14-19 year old black women had at least one of the four STDs being looked at, while only 20% of the white girls were similarly infected. Among these infected women, nearly 15% had multiple infections - of these four. Who knows what other infections were also piggybacked on top of the rest.

And of course, these infections all have the ability to present invisibly, for both men and women, meaning that not only is there a potential for continued widespread infection, but that it's very likely both women and men will end up with fertility problems down the line, thanks to the scarring that these diseases can cause (especially when they shift into pelvic inflammatory disease).

I'm not sure how people can look at these numbers and see anything other than earthshattering disaster for abstinence-only education. Something like a billion dollars has been spent on something that conclusively does not work. Not only does it not work, it is putting our teens, our children, at serious and significant health risk, not only for the immediate but for their future health, as well.

I've taught sex ed, and I know it can be uncomfortable. I've had to teach sex ed to my relatives, so I know how that can be even worse than sitting down with strangers. It can be embarrassing. Questions can be asked that you don't want to answer, or don't know how to answer - but we, socially, culturally, religiously, politically, need to get over it. Comprehensive sexuality education doesn't have to be about giving permission to have sex whenever; it's very much a whole body/being approach to teaching that doesn't just emphasize safe sex, but it also can (and should) emphasize things like waiting for what is morally right for the individual, cover things like protecting yourself from abuse, being comfortable in your own gendered skin, taking care of your plumbing; comprehensive sex ed is not about encouraging orgies, it's about encouraging responsibility and agency. We have to embrace this - and if we don't, then as a society, those infections are just as much our responsibility as it is the teenagers actually having the sex.


Oh, as a side note: the researchers in this particular situation did something I'd really love to see more often. While the survey was anonymous and they have no way of knowing which women were infected, they did inform all participants of the finding results and treatment recommendations via a password protected phone number, and they sent multiple reminders to the women who did not call in to the line. This keeps confidentiality, while still going well above and beyond what most researchers seem to do in these situations - it would be great if this could become the norm, rather than a pleasant surprise in a completely depressing article.

Monday, March 17, 2008

Fixing the translational pathway?

The Scientist announced today (free subscription required) the inauguration of the Committee on Bioscience Innovations, a nonprofit think tank that will seek to find solutions to the translational crisis. What's that? Glad you asked! It's shorthand for the fact that massive Federal investments in scientific research are not yielding the returns they should, either in terms of improved health outcomes for the American taxpayer (who, after all, is footing the bill for all this work) or in increased access / lower cost health interventions. The new group, which is made up of business and academic leaders from around the country, has already identified substantial financial and managerial barriers to the effective translation of research results. It will be interesting to see what else they come up with. As you know if you've read any of our many recent posts about the FDA, questions about what academic researchers and Big Pharma owe us--the taxpaying public--in exchange for our money and our trust--have important ethical repercussions.

Shrinky Dinks All Grown Up

Do you remember Shrinky Dinks? Chances are, if you're around my age or have a child around my age, you do. We loved them when I was a kid; we had the kits, of course, not the newfangled Shrinky Dinks for ink jet printers and other fancy stuff.

Little would I have ever thought that I'd run across Shrinky Dinks again, outside of crafts with my niece. But Michelle Kkine and her students, of University of California, Merced, have continued with their DIY biotech projects, using their imagination and the toy isle to use Shrinky Dinks to create tiny rubber plates of cell wells that can nestle embryoid bodies and allow for rapid growth medium change with minimum hassle. So it's cheap, it's fast, it's easier than before - it's kind of hard to find a downside. They published their results in Journal of Visualized Experiments, which gives you a detailed video how-to, as well as written protocols for reproducung the stem cell growth yourself. Unfortunately, I can't figure out how to get that particular video embedded in our site, but it's definitely worth the click-through to watch if you find this sort of thing interesting.

And of course, we have to consider the ethical implications of this. First and foremost is the simple fact that the DIY Biotech movement is growing, and will continue to grow, and become easier for the home enthusiast to pursue and do outside of a laboratory (especially with video guides), and then the more abstract concept of video documentation in general. Given the scandals that continue to rock the biotech world, including the latest from South Korea, I wonder what kind of result it would have to require video documentation as part of any journal submission.

It's interesting - I think most people are going to be more panicked by the idea of people culturing mediums in their bathroom. In a lot of ways, it's the start of the ultimate doomsday scenario. Me, I find the idea of using technology to enforce research integrity much, much more interesting.

Friday, March 14, 2008

Take two aspirin and read my blog in the morning?

NPR featured a piece recently on the burgeoning number of physicians who are posting their thoughts and experiences online. There's a huge variety of docs' confessionals out there on the web--some funny, some sad, some angry ... a lot like the rest of the blogosphere, actually. The story asks whether physicians' blogging about their practices, and their patients, could constitute an invasion of patient privacy. It also asks whether other kinds of harm could result from an individual patient recognizing herself (or himself, naturally) online, and what such a discovery might mean for the physician-patient relationship.

Hat tip: Rebecca Garden

Thursday, March 13, 2008

Pillow Angel Case Update

We had blogged about the 'pillow angel' case before, a little more than a year ago, and we thought our readers would like an update. From CNN: "It's been a year since the parents of a severely disabled child made public their decision to submit their daughter to a hysterectomy, breast surgery and drugs to keep the girl forever small. Today, the couple tell CNN, they believe they made the right decision -- one that could have a profound impact on the care of disabled children worldwide." Full article here.

Ashley's parents blog is here.

Student Pugwash USA Launches Science Policy Election Guide for Young Voters

Young voters, ages 18-25, showed overwhelming concern about science, technology, and health policy issues in an informal survey conducted in fall 2007 through the popular social networking website, Facebook. In response, Student Pugwash USA (a supporter of the Women's Bioethics Project and Blog) launched From Electrons to Elections, a science and technology policy guide to the 2008 elections; it is a non-partisan resource designed to educate young voters on science, technology, and health issues and provide them with the platforms of the leading political candidates on these subjects. It engages students on the issues through interactive technologies including blogging, YouTube videos, and polls. The guide explores a wide range of issues including peace and security, energy and environment, health, and emerging technology. Check it out here.

Wednesday, March 12, 2008

Embryo donation & adoption

I admit it: I don't know a whole lot about programs that promote embryo donation and adoption, or how that whole process actually works. If you share my ignorance, and you've got some time and a little money, you can attend an upcoming conference to learn more. "Emerging Issues in Embryo Donation and Adoption" is a 3-day meeting sponsored (under a grant from HHS) by the National Embryo Donation Center (NEDC) this May in DC. The conference is sponsored by NEDC, adoption agency Bethany Christian Services, and the University of Tennessee Graduate School of Medicine. Most of the speakers appear to be from religious organizations, clinics or individuals that perform the donation and adoption procedures (ie, infertility professionals), or "success stories"--parents who have successfully adopted. (Which, by the way, seems like an odd word choice ... unless, as seems to be the case for most of the people involved in this business, you see no difference between an embryo in a petri dish and an actual baby/child.)

At least a couple of interesting things come up for me here. One is, does the Federal government belong in this business? Even if it does, is it really more important to secure protection for frozen embryos than for for uninsured, already living, children? I'm also a little confused about the involvement of Catholic thinkers and organizations in this issue, since (at least according to the Vatican) IVF is morally wrong. Unless the embryo already exists, maybe, and would just be destroyed otherwise?

If you don't have the time or money to attend the conference, but still want to know more, the NEDC website is pretty comprehensive--as is the Federally sponsored website, which is also the source of the very cute baby pic above.

Governor Spitzer--in this Blog?

While the current political trials of Governor Spitzer may at first appear to have no place in this Blog, a small item in the news, which is being discussed in the Feminist Law Professors Blog, caught my eye as well. Apparantly one of things caught on tape is a conversation with the woman, "Kristen", who met with Client 9--allegedly Gov. Spitzer. The New York Times reports that "After her encounter with Client 9, the prostitute told the booker for the agency that it had gone well, and the booker told her that he, in an apparent reference to Client 9, sometimes asked the women “to do things that, like, you might not think were safe.” (Link here)

While this could mean many things, it most likely means he didn't want to wear a condom. As a result, he exposed Kristen, and any other women he slept with, to the full range of STI's (including HIV and HPV) as well as unwanted pregnancy. In an interesting example of perhaps unintended coordination, another story on the NY Times' front page reports a study that 25% of U.S. teenagers (including 50% of African American teenagers) test positive for sex infections which is leading to the conclusion that treatment of boys (including vaccination against HPV) and men must be part of an effective public health strategy.

I do not believe that prostitution should be legalized. However, if there are situations where it is a transaction between consenting adults, and therefore ethically unobjectionable, there is no information here that indicates this is one of those situations. First, we only assume that Kristen is a U.S. citizen who can voluntarily leave this line of work. This is often untrue of sex workers in the U.S. There are increasing reports of foreign women lured to this country with the promise of jobs and then finding themselves forced to be sex workers. Moreover, the link between prostitution and drug addiction has been shown again and again. Is this a sound foundation for informed consent?

Moreover, whether or not it would ever be ethical to allow a sex worker to consent to exposure to an STI could there ever be informed consent by the spouse, or other partners, of a man who engages in this high risk behavior without her knowledge? (and all arguments hold the same however you would like to shuffle around the genders of the parties involved--there is quite a bit of male prostitution and it carries with it the same stigma of STI's and drug addiction).

Prostitution is a health risk for everyone, especially women, and just as we have ethical limits on the risks any individual can take, whether in the context of a drug trial or a risky surgery, we must consider them when the danger is not just to an individual woman who may or may not have consented but to all women who sleep with people who sleep with sex workers.
So is there a link between Governor Spitzer and women's bioethics? Absolutely there is and to the best of our knowledge, her name is Kristen.

Tuesday, March 11, 2008

GINA passes House, but still faces opposition

The Genetic Information Nondiscrimination Act (GINA) passed the House yesterday, but still faces some opposition: Last year, GINA cleared in the House with ease, passing with a vote of 420 for and 3 against, but Rep. Thomas Coburn placed a hold on the bill in committee "because he was particularly concerned about legal protections for employers and for health insurance companies." We blogged about this last year, asking where is the outrage?

This year, 11 senators, including Coburn, are resisting passage of the act because they are arguing that the current draft of GINA should be amended to "provide clarity to the health insurance industry, maintain the integrity of the underwriting process, and ensure accurate premium assessments,” the senators stated. They also are concerned about employers’ liability from the “inadvertent” collection of genetic data.

The full story from the Genome Web here. (registration required, but free)

Monday, March 10, 2008

public enemy #1

Did you know that the greatest danger zone for the modern soul is bioethics? I rather suspect that makes liberal bioethicists public enemy number one.

This news comes from the Catholic Archbishop Gianfranco Girotti, second in charge of the Apostolic Penitentiary, which deals in deciding matters of conscience, sins, and penance.
Asked what he believed were today's "new sins," he told the Vatican newspaper L'Osservatore Romano that the greatest danger zone for the modern soul was the largely uncharted world of bioethics.

"(Within bioethics) there are areas where we absolutely must denounce some violations of the fundamental rights of human nature through experiments and genetic manipulation whose outcome is difficult to predict and control," he said.
Which yes, I realize doesn't necessarily make the liberal bioethicists public enemy numero uno, but it certainly isn't going to place any of us cartographing this new world by liberal guidelines in graceful light.

Edited to add in: BoingBoing has the full list of the seven new social sins, and you'll note that bioethics is technically there twice, in the first and second spot, go us:
1. "Bioethical" violations such as birth control
2. "Morally dubious" experiments such as stem cell research
3. Drug abuse
4. Polluting the environment
5. Contributing to widening divide between rich and poor
6. Excessive wealth
7. Creating poverty

They're also considering holding a contest for a Bosch-ian version of the new sins; anyone game for a go? If so, click on through (and don't forget to share your art with us, too).


A new species of humans?

We've blogged many a time before about a question philosophers and ethicists love to debate about: What does it mean to be 'human'? Now, thousands of human-like bones belonging to numerous individuals have been discovered in the Pacific island nation of Palau, that paleoanthropologist Lee Berger describes as "pushing the published boundaries of human variation."

According to National Geographic, "The remains are between 900 and 2,900 years old and align with Homo sapiens, according to a paper on the discovery. However, the older bones are tiny and exhibit several traits considered primitive, or archaic, for the human lineage."

The full article can be seen here and the video of Lee Berger and his finds can be seen here.

A few years ago, the bones of what have dubbed Homo floresiensis or "hobbits' were found in Indonesia in 2004 and the debate of whether those hominids were 'human' is still raging on. This new find will certainly add fuel to the fire of the debate of whether or not 'humans' are exclusively Homo sapiens.

The question, it seems to me, is do what want a more inclusive notion of what humanity means? Or a more exclusive notion?

If it is a more exclusive notion, then let me quote Groucho Marx: "I'm not sure I'd want to be member of a club that would have me as a member."

Unprecedented organ donation: The Onion reports

From the lighter side ... here's a video "news story" from The Onion. And, in case you can't tell from the still below, the video isn't for the squeamish.

Anonymous Philanthropist Donates 200 Human Kidneys To Hospital

Got Posilac? Afact should be Ashamed

NYT reports on an advocacy group that is attempting to block the sale of milk produced without synthetic hormones.
The group, called American Farmers for the Advancement and Conservation of Technology, or Afact, says it is a grass-roots organization that came together to defend members’ right to use recombinant bovine somatotropin, also known as rBST or rBGH, an artificial hormone that stimulates milk production. It is sold by Monsanto under the brand name Posilac.

Monsanto spokespersons insist that the group is "led by farmers" even though it has been funded by both a marketing firm hired by Monsanto and by Monsanto itself. But we all know how to play "follow the money", so let's get to the cream of the matter:
Afact has come together as a growing number of consumers are choosing milk that comes from cows that are not treated with the artificial growth hormone. Even though the Food and Drug Administration has declared the synthetic hormone safe, many other countries have refused to approve it, and there is lingering concern among many consumers about its impact on health and the welfare of cows.

The marketplace has responded, and now everyone from Whole Foods Market to Wal-Mart Stores sells milk that is labeled as coming from cows not treated with the hormone. Some dairy industry veterans say it’s only a matter of time before nearly all of the milk supply comes from cows that weren’t treated with Posilac. According to Monsanto, about a third of the dairy cows in the United States are in herds where Posilac is used.

And the trend might not stop with milk. Kraft is planning to sell cheese labeled as having come from untreated cows.

But consumer demand for more natural products has conflicted with some dairy farmers’ desire to use the artificial hormone to bolster production and bottom lines, and it has certainly interfered with Monsanto’s business plan for Posilac. (bold mine)

Note the flow of the process: consumers choose, the market responds, and producers who are interested in continuing business adapt to what consumers demand through the free market. In this case, consumers have potentially legitimate concerns not only about the health impacts of the products, but also about animal welfare concerns – both of which are valid factors in the consumer choice algorithm. And in this case, the burden of proof is not on the consumer to show the safety of non-rBST milk, but on the industry to reassure the consumer that rBST-enhanced milk is of comparable safety and quality – as soon as we forget where the burden of proof lies in this, we undermine our rights as consumers to choose what we eat and drink.

The central question at the heart of this issue is whether we should make an exception to the paradigm of consumer-driven marketing that is supposed to be a mainstay of a capitalist and free-market economy. Yes, producers should be free to choose whichever methods they like to make their product, so long as it is within basic safety standards established by federal regulation and is accurately labeled to allow consumers to choose their products. But in the end, it is supposed to be the consumer who is allowed to choose which brand and which type of product they exchange their money for to take home. In other words, you have a right to sell whatever you want, but you don't have a right to make other people buy it if they don't want it – Capitalism 101.

If there were a risk of negative impacts on consumers for choosing milk without artificial hormones, then there may be a case for debate. But when the argument is fueled by economic protectionism of what is essentially a monopoly on a technological intervention designed, not for consumer health, but for increased productivity and profit, there is no debate. The rights of consumers to choose the product they want trump the rights of industry to skew the rules of capitalism in order to make a profit. And the right to use a technology should never be conflated with a mandate to use a technology unless there is an urgent and severe threat to public health.

I would like to add that it is ridiculous that we are now on the defensive on this issue – forced to defend the rights of consumers to even buy milk that is produced using more favorable methods. Don't forget that the FDA already requires all milk produced without rBST to be labeled with a disclaimer stating that there is no recognizable difference between milk treated with and not treated with artificial growth hormones; this is a blatant kowtow to the interests of conventional milk producers and their supporting biotech industries to protect their economic interests.

Apparently, consumers think there is a difference.