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

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.

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.)
-Kelly

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 NIH.gov

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 Time.com.

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.
-Kelly

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.

-Kelly


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.

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.
-Kelly

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

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.

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 embryoconnection.org, 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.

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)

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).

-Kelly

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.

"Reproductive outsourcing" taking off in India

Today's NYT reports (again) on the growing practice of "reproductive outsourcing" in India. For about $25,000 -- about a third what it would cost in the US -- would-be parents can get the whole enchilada: donor egg, the services of a pre-screened gestational carrier, medical expenses, plus travel and accommodations to pick up their little bundle of joy. And none of those pesky legal hassles that can sometimes crop up domestically, as the only names on the birth certificate are the customers'.

Interesting semantic note: Back when this practice was still called "surrogacy," there was at least some intimation that there was some relationship between the would-be mom and the gestational carrier. The would-be mom couldn't carry the pregnancy herself -- usually for health reasons -- and the gestational carrier was essentially pinch-hitting. "Outsourcing," on the other hand, is a business term, in which one "hires out" for unprofitable, dirty, or inconvenient labor.

If you haven't yet read Margaret Atwood's novel, The Handmaid's Tale, perhaps this is an opportune moment. (There's also a movie version, but as I haven't seen it, can't vouch for it. In the film The Island, clones are used to carry pregnancies ... and they are killed once they've served that purpose.)

Is Brain Enhancement Wrong?

In a previous survey on this blog, we had asked if you would take a neuroenhancement drug if it had a minimal side effects and a surprising number of you had said 'yes.' (roughly 52%).
But is that considering 'cheating'? -- The debate continues in an article in the NY Times today:

"In a recent commentary in the journal Nature, two Cambridge University researchers reported that about a dozen of their colleagues had admitted to regular use of prescription drugs like Adderall, a stimulant, and Provigil, which promotes wakefulness, to improve their academic performance. The former is approved to treat attention deficit disorder, the latter narcolepsy, and both are considered more effective, and more widely available, than the drugs circulating in dorms a generation ago."

Full article accessible here.

The Intersection of Krispy Kremes and Neuroethics

Never thought you'd hear Krispy Kremes and neuroethics in the same sentence? An article in Science Daily reports new research from Northwestern University's Feinberg School of Medicine looks at how your brain reacts as you walk by the donut shop and inhale the wafting aromas of these oh-so-good-but-oh-so-bad-for-you toothsome treats. Does it come as a surprise to anyone that after fasting for eight hours, then being shown pictures of donuts, FMRI's show that the limbic system lights up like a Christmas tree?

As one the researchers commented, "Now I know why I can't resist walking into the bakery some days when I smell fresh scones."

The w(hole) article can be accessed here.

The Very Model of a Singularitarian

We've blogged briefly about the Singularity before, but with it getting more and more attention in the media, it has even merited a video parody! So, with apologies to Gilbert & Sullivan, enjoy this version of A Model Singularitarian:



Coming soon -- The Very Model of Modern Bio-Ethicist!

The Right to Be Sick...and Private

In our youth we proclaim and revel in our seemingly never-ending vitality and "immortality".

As a cub reporter many, many years ago, I felt pretty hardy working on stories until 5 in the morning--working almost a full 12 hours several days a week, and simply leaving the newsroom to go home for a quick shower, change of clothes, bite to eat and refreshing of makeup, to return and do the very same thing the next day. Abusing myself on less than 2 hours of sleep 3 days out of 7 made me feel exclusive and "special". I boasted to colleagues about never being ill with colds or flu, or even getting tired. My work kept me energized too busy to worry about missing days of work. One week I spent 8 hours in below zero cold, in mid-January Philadelphia, doing man-on-the-street interviews with Diane Sawyer, until my fingers were blue. Aah, the good old days...

Today, I have to be careful that some of the life challenges I've been forced to face, don't cause me to get depressed--because to get depressed, for me, means a sore throat, lowered metabolism, little energy, headaches, muscle aches and--if it continues--general malaise erupts into major gum infections, and an arthritic flare that requires bed rest and just gets steadily worse. News one would never share with a potential employer.
The question I pose in this post, however, is how much of the information about the illnesses we harbor is private information, not the business of employers or potential employers?

When does an employer desiring to know, or deciding to penalize an employee who either has a certain illness, or requires certain provisions because of an illness (not considered a disability), cross the line of violations of privacy? When does an employer or co-workers truly "need to know"?

Read the entire article in the NYT here:

A Good Read

Another solid addition to the WBP Book Club is Devra Davis' The Secret History of the War on Cancer.

For those of you who may have already read this book—this review comes as no surprise. But for those of you new to this author, one thing comes across quite clearly when you read what she has to say is this: Devra Davis knows a thing or two about cancer. And she did her homework when researching the data for this book.

Davis, who holds a Ph.D and a M.P.H., is the Director of the Center for Environmental Oncology at the University of Pittsburgh Cancer Institute. She was appointed in 1994 by President Clinton to the U.S. Chemical Safety and Hazard Investigation Board, and served as Scholar in Residence at the National Academy of Science.

In “War”, she paints a grim and compelling portrait of the health care industry, and how the leaders of the industries that made cancer-causing products, sometimes profited from the drugs and technologies created to fight the disease. According to Davis, for years we’ve become immersed in fighting the wrong war, directing our efforts against the wrong enemy, using the wrong weapons.

In her essay, “Deadly Secrets” she outlines an unintentional web of lies, and half-truths, perpetuated by our world industries, in both exposing and contaminating the world and our bodies with cancer-causing agents, and then covering up or suppressing the knowledge and information from the public for many years—even by health care industry scientists. According to Davis’ website, over 10 million cancer deaths over the last 30 years could have been prevented! Also among her findings: that implementation of the pap smear as a diagnostic, life-saving tool, was held back for more than a decade amid fears that that the test would undermine the private practice of medicine.

Again, a good, gripping read.

Autism Vaccine Settlement

The parents of nine-year old Hannah Poling, daughter of a Georgia couple, speak out about the government's admission of responsibility for their daughter's vaccine-linked autism, and have agreed to pay an as yet undisclosed settlement amount to compensate the Poling's for their family's pain and suffering as a result. The CDC is calling the case an anomaly, not an outcome to be experienced by the majority of children receiving vaccines. What should be a reasonable settlement for these types of cases? What are the ethical issues facing parents fearing an autism-link to vaccines in the decision to vaccinate or not?

See the entire CNN article here.

Politics, science, and autism: part 547

Despite substantial evidence to the contrary, some people believe that vaccines (specifically, trace amounts of mercury in vaccines) cause autism. Apparently John McCain is one of those people. He was quoted this week as saying that the incidence of autism is rising (true, according to the CDC's most recent report), and that "there’s strong evidence that indicates that it’s got to do with a preservative in vaccines."

It just ain't so. That's according to--at least--the Institute of Medicine (report here); researchers at the California Department of Public Health (abstract); and the Centers for Disease Control (ongoing research). And a study reported last month in Pediatrics concluded that babies excrete thimerosal (the mercury-containing preservative in vaccines) more quickly than previously thought.

The NYT suggests that the Senator's claim is designed to garner support from the numerous parents' groups that believe in the thimerosal-autism connection. To further confuse the issue, the Department of Health and Human Services recently agreed to settle a case that alleges that administration of standard childhood immunizations caused illness in a child with a pre-existing mitochondrial abnormality. You can learn more in this New Scientist article.

This isn't to pick on Senator McCain--we're nonpartisan on the blog--but it did make me think about how and why politicians choose sides on controversial issues in science. In that sense, the autism controversy isn't much different from climate change or evolution. If the meta-issue here (politics and science) is of interest to you, check out Sciencedebate 2008--a call for the presidential candidates to share their views on the environment, health and medicine, and science and technology policy.

The Second Enlightenment Cometh?

If you are a technoprogressive OR a coffee lover, you'll enjoy this article on Wired this week about how the newest cognitive enhancers (as opposed to the 'old' cognitive enhancer, coffee) and technologies will lead to the Second Enlightenment:

" Imagine a drug that can reduce your need for sleep, increase your concentration and make you smarter, with minimal side effects.

Call it Morvigil.

What would such a drug do to society? Would governments ban it, would it become the drug of the rich or become a virtual prerequisite for your workday? ...."

Full text of the article here.

The Beginning of Face Transplants in the U.S.

Last year WBP discussed the first-ever, medical breakthrough face transplant in 2005, that transformed the quality of life for a French woman mauled by her pet Labrador retriever. That patient—whose *new* face is now known to the world—as well as the identity of the donor—is doing well and healing nicely according to her doctors, successfully surviving tense and repeated tissue rejection episodes. To see the progress made by Isabelle Dinoire is nothing short of a miracle.

Now, the first hospital in the U.S., Boston’s Brigham & Women's Hospital, has been given the green light to start performing face transplants. The approval comes from the New England Organ Bank, the oldest independent organ procurement organization in the country. According to the agency’s website, only patients whose faces have been severely disfigured by skin cancer, burns or trauma will be considered as potential candidates for the surgery. In addition, the candidate must also be a current kidney transplant patient, already on anti rejection medication. Conditions likely to limit the candidate pool considerably. Critics have already begun lining up to voice concerns over the ethics of a non-life saving surgical procedure that could clearly put patients’ lives at risk.

Arguably, the importance of the procedure leaves little to question. What does pose questions, at least for this writer, is what the ethical implications of this groundbreaking surgery could be for the recipients of the surgery, as well as for the donors and families of the donors in terms of privacy.

Would HIPAA issues come into play? Having a face transplant poses different issues and/or risks in terms of privacy for both recipients and donors, unlike other types of transplant surgery. How will governmental agencies address—and remedy the likely privacy issues that will arise with restored patients walking around with easily identifiable (perhaps) body parts from an unfortunately deceased donor.

What if the donor—or recipient—is a celebrity? Or is a minor? What are the protections in place regarding privacy for both sides? What are the patient’s rights…what are the donors—and how would current privacy laws be modified or changed to accommodate a new surgical frontier? Do one group’s rights supersede the others? These may seem like sophomoric questions, but I wonder nonetheless. In the case of the first recipient from France, none of the parties involved appears overly concerned at this stage about issues of privacy. However, in the United States where matters of “whose business is it anyway?” and where concern—and sometimes outrage—over keeping medical information confidential is ever-increasing, what would be the real-world medical ethics that come into play here? And—would there be differences in how those ethics would affect patients on a gender scale? Much to ponder.

Read the full article here.

Free genetic testing ... buyer beware

Following along the lines of several recent posts, another privacy bulletin: a company called Aperture Health has announced that it's offering free genetic testing as part of its Wellness360 program. The program, called geneVIEW, will "uncover hidden diseases--before they have a chance to cause symptoms," and allow you to "learn about your genetic heritage--and know your true history." These are interesting claims, playing into cloudy public perceptions of what genetic testing actually can and can't do, and reinforcing concepts of genetic determinism in both medical and more existential terms. Aperture doesn't offer any counseling in connection with results, though they do suggest that members print their results and discuss them with their doctor or a genetic counselor. There also doesn't appear to be much information available about what, exactly, is tested for if you sign up. These are all things I could go on about for quite some time.

But the really interesting piece here, and the one that some regulatory body somewhere really ought to be paying attention to, has to do with the business model and the protection of privacy. First, the business model: they make their money from (1) advertisers and (2) employers. Chew on what that might mean for a few minutes, and then come with me on a trip through the website.

The section on geneVIEW claims, "Your genetic code is your private property--we'll help you unlock its secrets, just for you to see." In the Q&A section, they say, "At no time is your information shared, sold, rented, loaned or made available to anyone;" but if you dig around, you'll find that they define this protected "private information"as your name, address, phone number, and SSN. So when they say, "We never share personal information about our members with insurance companies, employers or advertisers," it's a little fuzzy just what this means.

Your health information--including, as far as I can tell, the results of your genetic tests--is another story. To find out this stuff, you have to look at their HIPAA policy--not just the privacy policy. Here, they note that they are not a covered entity under HIPAA, but promise to behave in ways consistent with "applicable" rules. Here's what they say about your medical information:

For Services

We will use medical information about you to provide you with treatment and services. We may share this information with members of our provider network or with others involved in your care such as doctors, nurses, or health care facilities.

For Payment

We may use or disclose your medical information to bill and collect payment from your employer for the services we provide to you. For example, we may need to inform your employer that services provided by a Aperture Health provider have been performed and as such, either you or Aperture Health are eligible for reimbursement by your employer.

Third-Party Research

We may use and disclose medical, diet and exercise information to any third-party. The information will be stripped of all information that could allow for the identity of the member. For example, a member's records will only contain, birth date, general geographic location and related information. The member's name, address, phone number and any identifying information will be removed from all records to which third-party access is provided.

What's the upshot? Well, first, there's a pretty good chance that the fact that you've had a genetic test will be known to your employer and (possibly) to your insurer. As I blogged recently, this is an issue to be concerned about. It also looks to me like they can, and will, sell your genetic information--de-identified, for what that's worth--to researchers (a term that isn't defined anywhere I can see). I've blogged some of these issues, too.

There's also this odd little disclaimer:

You may ask that family members or other individuals not be informed of specific medical information. That request must be made in writing to our Designee. We do not have to agree to your request. If we agree to your request, we must keep the agreement, except in the case of a medical emergency. Either you can stop a restriction at any time. [sic]

Yeah. Free genetic testing? This is one "opportunity" we should decline.

How Private is Private? Is Google a covered entity?

Back in 1996, the Health Insurance Portability and Accountability Act (HIPAA) was enacted by Congress for the purposes of ensuring continuity of healthcare benefits for workers changing or losing their jobs (Title 1) and to establish national standards (Title 2) for electronic health care transactions, maintenance of privacy about so-called protected health information (PHI) and security of that information maintained in electronic repositories (e.g. hospital information systems and other data bases).

Since the actual implementation of the Privacy and Security Rules in 2003, there have been considerable efforts on the part of healthcare organizations (providers, health plans and so-called healthcare clearing houses) to develop policies and procedures which adhere to federal law while still carrying out patient care effectively as well as managing clinical research productively. Of course, nothing is perfect and there have been a plethora of papers and media articles on the barriers to patient care (Gross 2007) and to important large population based clinical research (Armstrong, Kline-Rogers et al. 2005; Wolf and Bennett 2005; Wilson 2006). Further, the security of PHI is not so great either (Freudenheim and Pear 2006).

Therefore, health insurance might be portable for some workers, but PHI is not!

With all the recent hoopla about Microsoft wanting to purchase, somewhat hostilely, Yahoo in order to “corner” the market on search engines, it might have been easy to overlook 10 second sound bites on the morning radio news, or the little technology tidbit in the New York Times (Lohr 2008) which was NOT on the front page.

So it seems that Google actually will scoop Microsoft in implementing a web based interface with a major healthcare system, in this case the Cleveland Clinic with its some 100,000 patients. The deal is, if one has a Google e-mail account, one can use the same sign-in and password to access and transmit one’s medical records. Apparently, the pilot phase will involve only some “innocuous” data such as allergies and prescription records. However, prescription records can certainly allow inferences about underlying health conditions for specific patients which, if leaked, could have problematic consequences. Funny how Google mail accounts are encryption proof (Stone 2007) to corporate electronic security walls. Does that provide some clues as to how undone PHI privacy could become?

And what about HIPAA? There is some debate about whether Google could be considered a healthcare clearing house or other entity which information repositories containing people’s PHI would be considered protected and would have an obligation to protect under current federal regulations. The World Privacy Forum (Gellman 2008) thinks not.

Other dicey questions: will Google patients be subject to advertising spam or other intrusive advertisement adduced from their prescription lists? What guarantees that the “client” (read patient lists) won’t be sold to Pharma companies as yet another means of developing data bases about physician prescribing patterns? Who is going to regulate these issues? Google is a great search engine—I use it all the time! But I’m not sure I want to use it to manage my healthcare information. I’d rather continue to keep it on my PDA!


Armstrong, D., E. Kline-Rogers, et al. (2005). "Potential impact of the HIPAA privacy rule on data collection in a registry of patients with acute coronary syndrome." Archives of Internal Medicine 165(10): 1125-1129.
Freudenheim, M. and R. Pear (2006). Health hazard: computers spilling your history. New York times. New York.
Gellman, R. (2008). Personal health records: why many PHRs threaten privacy, The World Privacy Forum.
Gross, J. (2007). Keeping patients' details private, even from kin. New York Times. New York.
Lohr, S. (2008). Google Health begins its preseason at Cleveland Clinic. New York Times. New York.
Stone, B. (2007). Firms fret as office e-mail jumps security walls. New York Times. New York.
Wilson, J. F. (2006). "Health insurance portability and accountability act privacy rule causes ongoing concerns among clinicians and researchers." Annals of Internal Medicine 145(4): 313-316.
Wolf, M. S. and C. L. Bennett (2005). "Local perspective of the impact of the HIPAA privacy rule on research." Cancer 106(2): 474-479.

Saturday is International Women's Day

In honor of International Women's Day, the new issue of the UNESCO Courier has published "Between Two Shores," essays by six women writers from around the world: Doris Lessing, Véronique Tadjo, Spôjmaï Zariâb, Michal Govrin, Kiran Desai, and María Medrano. The collection features stories from women who live far from their place of birth, some by choice, some not. Not directly ethics-related, but certainly worth a look!

Should Americans be allowed to buy and sell transplant organs?

Another story on organ transplantation ethics, this time from a policy perspective. The libertarian Cato Institute recently hosted a policy summit on the issue of payment for transplant organs. While current US policy prohibits payment for human organs for transplant, based on concerns that poor and vulnerable people would likely be exploited by those who could afford "replacement parts," some argue that it's wrong and unduly paternalistic to stop people from selling their organs. Layer in the substantial shortfall in donor organs and the number of people who die waiting for a suitable transplant organ to become available, and you've got a complicated policy question.

Featured in the panel discussion are (from the Cato Institute website): Arthur Matas, Professor of Surgery; Director, Kidney Transplant Program, University of Minnesota, Immediate Past President, American Society of Transplant Surgeons; Francis Delmonico, Professor of Surgery, Harvard Medical School, Medical Director, The Transplantation Society; World Health Organization; Benjamin Hippen, Transplant Nephrologist, Carolinas Medical Center, At-Large Member of the United Network for Organ Sharing Ethics Committee; and Samuel Crowe, Senior Policy Analyst, The President's Council on Bioethics. You can check out the podcast here.

Photo credit: Aldenbrooke's Hospital Transplant Unit, NHS

On Sex-Segregated Schooling

NYT has an in-depth article on
teaching boys and girls separately in school based on proposed differences in everything from artistic preferences to optimal operating temperature.

While I have blogged previously on using scientific input to improve educational methods, I am somewhat skeptical of the extent to which segregation is advocated. A large reason is that while the mean may show a slight differential between the sexes, the spread has significant overlap and we regularly see a healthy number of outliers. I, for example, took a Thundercats lunchbox to school and read all the books in the library on "creepy-crawlies" like ants, spiders, and snakes, and I know I would have been utterly miserable in an all-girls' classroom.

Assuming that these differences are scientifically provable (or non-disprovable) for a majority of the population, we are left with a naturalistic/normative conflict between what is "optimal" now and what we forsee as future needs (such as the need to interact comfortably with males and females).

One thing we can take away from this is that we ought to exercise caution when advocating extreme changes in schooling to avoid backlash effects (as are becoming apparent in the marked decrease of boys' success in school). Also, there is no clear-cut answer on how to improve our education system, but there are many academic disciplines we ought to access in order to enrich the discussion.

Addendum: A few more thoughts on this. First, an important question inherent in any push for change the question must be asked: "Are we running away from something, or running towards something?" In other words, in segregating boys and girls, are we avoiding a harm, or seeking a benefit?

Second, I observe that while girls suffered in school in previous generations due to overly low expectations, the current hypothesis for boys is that they suffer from overly high or unrealistic expectations. I'm sure a gender theorist would have some interesting comments on this.

Third, I have noticed that a majority of problems develop at the interfaces between contrasting systems or paradigms. In this case, it will be when we make a shift from a school system that adapts to the strengths and weaknesses of girls and boys to an adult world where people are expected to adapt to the needs of society ("including a competitive workplace that was designed around men's strengths and is only slowly changing," the feminist in me notes). Assuming that such an education system presents significant benefits, I am concerned with how we will help children make the transition to adulthood.

Modern Day Mowgli

In somewhat odd timing, given the content of my last post here, the story of a Russian "bird-boy" has come to light:

Authorities say the neglected child was found living in a tiny two-room apartment surrounded by cages containing dozens of birds, bird feed and droppings. The so-called “bird-boy” does not understand any human language and communicates instead by chirping and flapping his arms, Russian newspaper Pravda has reported.

Social worker Galina Volskaya, who was involved is rescuing the child from his home in Kirovsky, Volgograd, said he was treated like another pet by his 31-year-old mother who never spoke to him. Miss Volskaya said: “When you start talking to him, he chirps.”

Russian authorities say the child was not physically harmed but is suffering from “Mowgli syndrome”, named after the Jungle Book character raised by wild animals, and cannot engage in any normal human communication.

Neil Gaiman blogs about it and wonders what the boy is saying. I wonder - do the birds understand?
-Kelly (with thanks to Mr. Neil)

News of Note

A couple of stories that have captured our interest:

From the Wisconsin Technology news:
"In the first of several decisions expected in a patent dispute involving human embryonic stem cells, the Wisconsin Alumni Research Foundation said today it has been notified that the United States Patent and Trademark Office has upheld the claims of one of the foundation's key stem cell patents.

The patent challengers, however, said they will continue their challenge of what they termed "three overreaching patents on human stem cells."

According to WARF, the licensing arm of the University of Wisconsin-Madison, the decision pertains to the patent for primate and human embryonic stem cells known as '913.'

Carl Gulbrandsen, managing director of WARF, called the decision of patent examiner Gary Kunz an affirmation. 'We're extremely pleased with this decision,' he said in a statement released by WARF. 'It affirms what WARF has believed all along, that Dr. Thomson's breakthrough discoveries are patentable inventions.' " Full story here.

From Science Daily:
New survey results show that only 29.5 percent in a sample of 1,015 adult Americans consider nanotech morally acceptable. In Europe, significantly higher percentages of people accepted the moral validity of the technology:
"In the United Kingdom, 54.1 percent found nanotechnology to be morally acceptable. In Germany, 62.7 percent had no moral qualms about nanotechnology, and in France 72.1 percent of survey respondents saw no problems with the technology.

'There seem to be distinct differences between the United States and countries that are key players in nanotech in Europe, in terms of attitudes toward nanotechnology,' says Scheufele.

Why the big difference?

The answer, Scheufele believes, is religion..." Read on here.

From the NY Times: Six Killers: America’s Leading Causes of Death: "They are the leading causes of illness and death in the United States today: heart disease, cancer, stroke, chronic obstructive pulmonary disease, diabetes and Alzheimer's disease, in that order. And they have a lot in common." Full article here. [Query: Would more Americans find nanotechnology more acceptable if they knew that it could cure these leading killers?]


From the Washington Post, a study suggesting that man's 'best friend' could be a robot? - a study by Saint Louis University that found the lovable pooch and the interactive dog robot called AIBO were about equally effective at relieving the loneliness of nursing home residents, and fostering attachments. Full story here. I agree with Sara Kiesler, professor of computer science and human-computer interaction at Carnegie Mellon University, who said "the results of the study are encouraging but not completely convincing."

Primum Non Nocere

First, do no harm. I don't know anyone who practices any aspect of medicine who disagrees with this foundational concept of what medicine should be and do - do no harm. And on an intuitive level, harm seems so self-evident, and easy to avoid.

Except, of course, anyone who's spent more than an hour reading about the history of medical ethics knows that this isn't the case. Harm, unfortunately, is one of those words that is flexible, has a definition that changes depending on context, case, even attitude. Ultimately, what does it mean to cause harm?

I had a class last year where a student would argue that anything which caused someone to be "not normal" was harmful, and therefore doing no harm meant doing your best to make sure everyone was normal. Ignoring the more Harrison Bergeron aspects of that thought for a minute, what does it even mean to be normal? Again, it's one of those things that seems self-evident, until you stop and think for a minute. We're accustomed to this argument now (at least, I hope the folks who'll be reading this are) when it comes to think like Deafness or dwarfism - parents who are dwarfs or Deaf who want children sharing these same genetic and physical traits. It is, for them, what is normal - point being that normal itself is not a concrete concept, but flexible. You could argue that normal is normative.

There's been a lot of debate about whether or not, for example, Deaf parents should be "allowed" to have Deaf children - that is, should fertility doctors be trying to create embryos that are deaf, should couples be able to request eggs or sperm from Deaf donors to increase their chances of having a Deaf child. I've argued strongly for this in the past, and won't go into the reasons here, except to say that part of the reason for my arguing for this is based on the notion of preserving culture, and not making a judgment call on what is normal. There are, after all, many people for whom the experience of being Deaf is perfectly normal, and I'm simply not comfortable pointing a finger and saying "you are abnormal".

That's why this particular YouTube video has been so thought-provoking for me. I suppose, when it comes down to it, I do have a concept of normal that includes "being able to communicate with the world" - I don't assume that means everyone; after all, I don't speak the majority of the languages on this earth. But the idea that someone who has what we would consider severe autism is communicating with the world, and it's simply the world that has not yet figured out how to communicate in return, is a novel and I'll admit, somewhat difficult, concept for me to wrap my head around.


Amanda Baggs, the woman in the video, is featured this month in Wired, and has a blog here.

I won't suggest that Ms. Baggs doesn't bring up interesting - and disturbing - questions in her video (obviously there's something here to think about, or I wouldn't have anything to write). But I wonder - given what she describes as being her language, is it even possible that someone who is not autistic, or cognitively different, could learn to communicate in it? Or maybe even more to the point - in my general notion of a language, it is a device that allows me to communicate with you - we both have the ability to learn it and use it to exchange ideas. Is Ms. Baggs' language one that more than a single person knows, uses, inhabits? I'm not necessarily convinced that, if it is an individualistic thing, if she is the only person speaking this language, than it can rightfully be called a language. But I also don't want to swing so far to the other side as to say it's not possible - I simply don't know.

I have some other concerns that are still marinating, so I'll just leave it at this for now.
-Kelly

Monthly 'Miracle' or Annual(e) Terror -- SNL takes on DTC Pharma ads

On a dark and snowy winter's day in New England, with spring nowhere in sight, and in desperate need for something that would lift my spirits (other than dark chocolate or coffee), I stumbled across this blog entry from the NY Times:

"At a time when the drug industry is facing increasing scrutiny from Congress and the public, the cast of “Saturday Night Live” has weighed in with a hilarious spoof of television drug ads.

The “commercial,” modeled after the real advertising campaign for the birth control pill Seasonale, touts a fake pill, Annuale. The spoof uses similar pill packaging, actors and even the same pink chairs, sneakers and yoga mats depicted in the real ad. Watch the video, posted below, for the over-the-top punchline. One of the funniest lines is in the list of “side effects” that rolls across the screen at the end of the ad."

Salvation -- I love it when I find something that makes you laugh AND think at the same time -- Enjoy!

Interested in Feminist Engineering?

Feminist engineering professor seeks motivated, pioneering graduate student candidate.

Alice Pawley is an assistant professor at Purdue University who is interested in recruiting graduate students to study engineering with some feminist theory thrown in. She is also soliciting suggestions on how to increase outreach to potential candidates and how to structure a program to be appealing to students considering graduate studies.

If you have suggestions, go swing by. And feel free to pass this info on to engineering students who might be interested in interdisciplinary studies and/or feminism and engineering. It is so exciting to see new programs like these in development!

[Editor's Note: Two really nifty feminist engineering blogs: She's Such a Geek! and Thus Spake Zuska.]