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.