blog.bioethics.net

California Steals the NIH Stem Cell Chief

So you were looking for proof of our "states are taking over science" hypothesis? Um, try this on:

The California Institute for Regenerative Medicine (CIRM) is courting the top stem-cell official at the US National Institutes of Health (NIH) to take over as its president.

James Battey, who since 2002 has coordinated stem-cell research at the
NIH as chair of its Stem Cell Task Force, was approached by a member of
the CIRM's governing committee in December after its current president,
Zach Hall, announced his resignation (see Nature 444, 803; 2006).

Since then, Battey has been excused from all stem-cell-related work at
the NIH, agency spokeswoman Marin Allen has confirmed. He remains in his
position as director of the National Institute on Deafness and Other
Communication Disorders in Bethesda, Maryland. "NIH is grateful for the
leadership he has provided and is honouring his privacy," Allen wrote in
an e-mail.

[Nature]

Worldmapper: A World Distorted by Inequality

A cliché is a phrase, expression, or idea that has been overused to the point of losing its intended force or novelty -- or at least that's what Wikipedia says. This dour definition leaves room for optimism: a clichéd phrase could in principle regain its force and novelty. Take the hackneyed expression, "A picture is worth a thousand words." In a recent article in PLoS Medicine, Danny Dorling has managed to transform lifeless data about global health inequalities into a set of maps that are both visually arresting and downright appalling.

The usual maps on distribution of disease and health indicators start with Mercator-type maps, and just stick data on the different countries, like this. Or they use colors to indicate differences in disease prevalence, like this. But Dorling and other collaborators on the Worldmapper project do something else: they have designed a computer program where different kinds of global health data are visualized on cartograms in which territories are drawn in proportion to the health value being mapped. You can compare the results with a map depicting the planet's current population, just to see how out of whack we globally are.

The result is a whole new world, or rather, worlds. For example, have a gander at Worldmapper Poster 214, which charts private health spending. The United States looks as if it has been inflated by a giantic bicycle pump, ready to burst, while all of Africa shrivels to a narrow strip of land, except for the bulbous tip of South Africa. The map on Physicians Working (Poster 219) is much in the same vein. You can make Africa reappear (and India!) by calling up the Early Neonatal Mortality map (Poster 260), where the Democratic Republic of Congo by far dwarfs the whole of North and Central America. In the map on malaria (Poster 229), it is Africa's turn to burst. For those who find the health-related maps depressing, there is always Toy Exports (Poster 57), and the worldmappers are planning to issue a Films Watched map in the future.
-Stuart Rennie

Labels: worldmapper

A Better Way to Use an iPod. Trust Us.

Well if you are wondering why nobody is blogging lately it is because no one at AMBI has slept in 5 days, while we've prepared for the launch of our new, online masters in bioethics.

Working with Apple, we've designed a program that not only has great teachers who are also mentors - and who have office hours, lots of interaction, and live sessions during their classes, but also thousands of hours of supplementary video on all areas of bioethics, all brought down automatically to your iPod (included with the program - how cool is that - click here to take a look), including lectures and case discussion by professor but also hundreds of the key television and even movie segments on bioethics that have been used in classes forever but not collected into one place.

On top of that, the iPod allows reverse feedback; you can read the information, for example, about a clinical ethics case on the iPod, from the description down to the actual chart (sans identifiers of course), then provide feedback using microphones that is then shared in a room where everyone gets a sense from their instructor as to how it's going.

And of course the iPod isn't the meat of the thing - the courses are taught by great faculty using key reading materials and the same teaching models that have worked in the old AMBI online masters program for more than five years. It's just, well, better. Every course in the Masters (not the clinical ethics certificate) is team taught. There is 24/7 support online including live chat on the web, and alums continue to receive updates of the video and audio materials in the program. The baby is born. For more information contact Summer Johnson at 518-262-6082, or click on LiveChat at this page to talk to a faculty member or the administrative director.

Labels: AMBI, Masters in Bioethics

Free Journals? Um, No. Somebody Get Us a PR Firm

Greg Dahlmann, who is rapidly becoming Captain Insightful and Visionary in Chief around AMBI as we create the Borg Cube of Bioethics Blogdom (boy would he hate it if he saw this post), alerted me to this hillarious/horrifying post on Poynteronline about the response of major science journals to the "open access" movement. PR guy extraordinaire Eric Dezenhall helped out a lot with some great arguments, if what you mean by great arguments is "sounds like a Republican presidential campaign piece":

Nature said that Dezenhall advised the science publishers to "focus on simple messages, such as 'Public access equals government censorship.' He hinted that the publishers should attempt to equate traditional publishing models with peer review, and 'paint a picture of what the world would look like without peer-reviewed articles.'"

Dezenhall also recommended joining forces with unlikely allies such as the conservative Competitive Enterprise Institute -- which, in addition to being a vocal critic of mainstream climate change science, reportedly opposes government-mandated science information projects such as PubMed Central.

Labels: ethics of publication, no such thing as a free lunch

Gay Sheep: Wolpe Says to NYT that Researchers Must be Held Accountable for Implications in Media Conversation About Sexual Orientation

Of Gay Sheep, Modern Science and the Perils of Bad Publicity, in today's Times, is an interesting review of the issues presented for gay rights by the sheep research. Our Paul Wolpe:

"Paul Root Wolpe, a professor of psychiatry at the University of Pennsylvania and a senior fellow at the university's Center for Bioethics, said that although he supported Dr. Roselli's research, I'm not sure I would let him off the hook quite as easily as he wants to be let off the hook. By discussing the human implications of the research, even in a somewhat careful way, Dr. Roselli opened the door to the reaction, Dr. Wolpe said, and has to take responsibility for the public response. If the mechanisms underlying sexual orientation can be discovered and manipulated, Dr. Wolpe continued, then the argument that sexual orientation is based in biology and is immutable evaporates. The prospect of parents' eventually being able to choose not to have children who would become gay is a real concern for the future, Dr. Wolpe said. But he added, This concern is best addressed by trying to change public perceptions of homosexuality rather than stop basic science on sexuality."

Labels: gay sheep, homosexuality, scientific responsibility

Alternative Sources of Stem Cells? How About the Garage Refrigerator!

Greg Dahlman pointed me to perhaps the weirdest take on how to isolate your own human amniotic epithelial cells from the placenta - at home (mmmmm. Will there be placenta left for lunch?) Here are the instructions. The creator of the method wrote in to give us a link to an even better page. Knock yourself out.

Labels: adult stem cell research, stem cell research, weird science

Will Human Clones Have Souls?

Esquire asks the question, "would a cloned human being have a soul?", as part of its "Answer Fella" series, which I mention as though I've ever heard of it, which I haven't. The question comes right before another about what it means to call "the badlands" badlands, and in both cases the correct answer is, "shut up."

But ever-patient, our Dr. Caplan - who will be celebrated tomorrow at Benjamin Franklin's 301st Birthday Party as recipient of the Franklin Founder Award - offers the answer Ben would have given, though Ben wouldn't have allowed a column as dumb as Answer Fella to exist in the first place.

It's kinda funny though:

Would a cloned human being have a soul?
It wasn't widely reported, but when Dolly the sheep—the first mammal cloned from an adult cell—died in 2003, she was listening to Barry White's 1974 smash album Can't Get Enough and pregnant by a Bolivian alpaca doing a long stretch at Edinburgh's Royal Zoo for running cocaine. Sure, the vets gave her the lethal injection, but the real cause of death was a broken heart. Now if a freaking cloned sheep had such a vast spirit, you can bet that a cloned human would be imbued with the same immaterial presence that binds us all, even Antonin Scalia, to the Godhead. But don't just take AF's word for it. C. Ben Mitchell, director of the Center for Bioethics and Human Dignity, says, "The answer is in the question itself. A cloned human being would in fact be a person and would therefore be ensouled. To be human is to be a person is to be a soul." This is neither an argument in favor of human cloning nor the final answer to various theological questions about the existence or nature of a human soul, topics best left to mouthbreathing Pentecostals, infallible men in funny hats, and Mitch Albom. It is simply to say, as Arthur Caplan, chairman of the Department of Medical Ethics at the University of Pennsylvania does, "If humans have souls, then clones will have them, too."

The end.

Labels: Benjamin Franklin, cloning

Berger & Moreno Go to Town Over the Alternative Stem Cell Report

At the Center for American Progress, Sam Berger and Jon Moreno picked a fight with whomever would listen concerning the idiotic White House report on alternative sources of stem cells. Well, listening was New Republic National Review Senior Analyst Ramesh Ponnuru, and you can watch what Berger and Moreno do to his analysis of their piece on the CAP site linked above. No point quoting it, I'm just not capable of typing even one more time either the work by or the critique of the New Republic/Weekly Standard on stem cells.

I'd say that someone should kick these guys and let them know that the voters already decided, and continue to decide, state by state by state ... and that nobody wants to destroy embryos, whether they are little people or not, and that the activity of doing so will likely fade away if only the basic science can get accomplished, and preferably through a decent funding mechanism so that the entire embryo isn't owned by companies as a result of the rush of venture capital into the funding and regulatory vacuum.

But I won't say that, because inside-the-beltway fights about stem cell funding are about as invisible out here in the fields as the annual Wonkette debate over which congressional aides are most attractive, and certainly just as futile. Only in Washington can so much debate ensue over a bill that can't survive a veto and that wouldn't really compete with California's budget even if it did.

Labels: adult stem cell research, Center for American Progress, embryonic stem cell research, White House

Spitzer's Stem Cell Plan Puts Ethics First

It's in The Times ... writes Confessore:

The grants themselves would be subject to peer review by a new Stem Cell Commission, which would also be responsible for enforcing the research guidelines. Those measures, Mr. Paterson said, would ensure that all embryonic research in New York was "legal, vital and ethical."

Oh and he's upped the ante - to $2 billion.
[hat tips: Greg Dahlmann, Jim Fossett]

Labels: New York, Spitzer, state stem cell politics

Male Circumcision and HIV: a Hard Sell

A hard sell: that is how Bill Clinton, at the last International AIDS conference in August, soberly described the use of male circumcision as way of reducing the risk of HIV transmission from women to men. He was not doubting the science. After a string of randomized controlled trials, the science looks about as promising as HIV prevention science can look. Clinton was suggesting there may be pitfalls in the actual implementation of the science into policy and practice in the countries where HIV is most prevalent. This last month seems to have proved him right, and also showed how different perspectives on male circumcision and HIV can be.

As an early Christmas present perhaps, UNAIDS executive director Peter Piot is reported to have declared on December 19th that African countries should prepare to perform male circumcisions on a large scale, starting with baby boys first, then adolescents, then adults. Strangely, Piot stated that UNAIDS had no plans to promote male circumcision in high-HIV prevalent India 'where the issue is sensitive for the Hindu and Muslim communities.' Hopefully UNAIDS will catch wind of the idea that male circumcision is a sensitive issue everywhere that circumcision is not traditionally performed, or everywhere it is performed but not on the schedule (with baby boys) that UNAIDS might prefer.

The New York Times also ran a piece on male circumcision and HIV by Tina Rosenberg that profiled male circumcision as the only sort of HIV vaccine we've got, and even if it does not provide perfect protection, we should be darn happy with it. Since there is no vaccine of the immunological sort around, according to Tina, we should promote mass circumcisions right away.

The cold shower on circumcision came from the Ugandan President, Yoweri Museveni. At a discussion with medical students in Kampala, he claimed that the recent science on circumcision and HIV gives a 'mixed message' to men: if you are circumcised, you stand less of a chance of getting HIV if you practice unsafe sex. As is well-known, Museveni (and his backers among religious conservatives in the USA) prefer the unmixed message of abstaining from sexual activity until married, and then being unfailingly faithful to your wife or husband. From that perspective on HIV prevention, it does not matter if you are circumcised or not.

International agencies and domestic journalists should draw a lesson from Museveni's statements: just because a study shows that an intervention would have a big public health impact, it does not mean that everyone will be sold on it. The persuasive power of science only goes so far. The rest will be messy, and involve politics, morality, economics and culture. A hard sell, as Bill said.
- Stuart Rennie

Labels: circumcision, Clinton, HIV, Uganda, UNAIDS

Of Course Ethics Books Are the Most Stolen Philosophy Books

Greg Dahlmann pointed me to Splintered Mind's Eric Schwitzgebel's post to the effect that ethics books are, well, you read the post title. But Eric has gone further, deeper, into the ethics book theft matter. He has numbers:

Missing books as a percentage of those off shelf were 8.7% for ethics, 6.9% for non-ethics, for an odds ratio of 1.25 to 1. However, I noted three concerns about these data that required further analysis. I've now done the further analysis.

Here are the concerns:

(1.) Older books are more likely to be missing, and the ethics books were on average a couple years older than the non-ethics books.

I addressed this concern by eliminating from the sample all books published prior to 1985. This brought the average age of the books to the same year (1992.9 for ethics, 1992.7 for non-ethics). On these reduced data, the ethics books were still more likely to be missing: 7.7% to 5.7%, for an odds ratio of 1.35 to 1 (p = .015).

(2.) Ethics books are more likely to be checked out than non-ethics books in philosophy, and there is a tendency for books that are more checked out to have a higher percentage of the off-shelf books missing -- not just a higher percentage of the holdings missing, but a higher ratio of missing to off-shelf-but-not-missing.

I addressed this concern by further reducing the sample, eliminating all the "popular" ethics and non-ethics books -- those cited at least 5 times in the relevant entries of the Stanford Encyclopedia of Philosophy. (This left only fairly obscure books, presumably known to and borrowed by only professors and advanced students in the field.) This actually seems to have increased the effect: 8.5% to 5.7%, for an odds ratio of 1.48 to 1 (p = .026).

(3.) Finally, some people were concerned that maybe law students were driving the effect. Therefore, finally, I eliminated from analysis all "law" books, defined as those books for which at least 10% of the U.S. holdings were in the four law libraries included in the analysis (UCLA, Harvard, Stanford, and Cornell law). This had little effect: 8.3% to 5.7%, odds ratio 1.46 to 1 (p = .044). Also, the percentage of ethics books missing from the four US law libraries was only 7.0%, versus 8.3% for the US non-law libraries.

So it's not (supposedly vicious) law students. And it's not a bunch of (supposedly conscience-impaired) undergraduates stealing Rawls. The effect is large, and statistically significant, just looking at books likely to be borrowed only by professional ethicists and students with a serious scholarly concern with ethics.

Based on these data, it seems indeed that ethicists do steal more books!

Labels: ethics of bioethics

How Much Do You Want A Child?
Enough to Die from a Uterine Transplant?

If you are wondering just how much people want to have children with their own baby-growing organs, ask the people who want to provide the uterine transplant, like this thoughtful fellow:

"The desire to have a child is a tremendous driving force for many women," said Giuseppe Del Priore of the New York Downtown Hospital, who is leading the team. "We think we could help many women fulfill this very basic desire."

Yup. Right before they die. The story is available everywhere, but for some reason this particular procedure takes me back to memories of another equally exploitative endeavor ... so the link is to the famed South Korean paper that also broke the Hwang story.

Labels: uterine transplant

FYI: feed downtime over the next few weekends

Hello folks,
For the next couple of weekends, the Editor's Blog Atom feed will be turned off every Friday night, and back on early Monday morning (starting this evening, after this post propagates). This is to save you technical headaches as I add labels to old blog posts; unfortunately, each time the feed is turned back on you will likely see approximately 25 posts resent back out, for which I apologize. Also unfortunately, that's something that is out of my hands (and in those of the people who wrote Blogger 2.0).

While the Editors will still have the ability to create new posts while the feed is turned off, they will not be sent out into the blog-verse, so check out the site directly during the feed downtime!

There are over 1400 blog posts, so this editing will take a few weekends. Again, I apologize for the inconvenience; if you'd like to talk to me about this directly, please feel free to email me at ajoblog.elf at gmail dot com.

Cheers,
-Your friendly neighborhood web elf

Labels: technical problems, updates, web elf

White House Plays Politics, Again, with Science;
Just One Lie After Another...

The White House is playing politics with science in a highly deceptive way. No one knows if adult stem cells or fetal cells will perform in the same way as embryonic stem cells. No one knows much of anything about any of the science because it is all new. It is true that, contrary to the report, Dr. Atala has said that federal funding for embryonic stem cell research ought proceed for the same reasons I have just given. The notion that there are viable alternatives to embryonic stem cell research has about as much substance as earlier Presidential statements that all embryos now frozen in U.S. IVF clinics could find couples willing to adopt them.
-Art Caplan

[The Ridiculous Report]

Labels: Anthony Atala, embryonic stem cell research, Hurlbut, White House

A Hot and Cold Running Genius:
Glenn McGee on MacArthur Fellow Eva Harris

From this month's issue of The Scientist:

Eva Harris won the MacArthur "genius grant" in 1997 for plenty of reasons. As a Pew Scholar in 2001, her bench work on the molecular virology and pathogenesis of dengue virus - specifically, the determinants for viral transmission - was tied purposefully to developing the epidemiological capacity of scientists in developing countries. Harris has helped many aspiring scientists in the developing world. They learn from her to create and sustain programs of bench science "on the cheap." And sometimes, it bears fruit in vaccines and even the promise of translating what might look like rudimentary science into the promise of a cure for the predominant arthropod-borne disease in the world.

Harris' genius, though, is in bioethics, although I find no record that she has ever used the term in her work. That's perhaps not surprising, given how much time bioethics seems to spend on "bad" scientists. I'm ready to tar Harris with the label "ethicist" because of her compulsive goodness. She can't seem to avoid fixating on "the cash value" of her work, and by that I do not mean the literal value she might have extracted from her most noteworthy accomplishment to date - the development of A Low Cost Approach to PCR: Appropriate Transfer of Biomedical Techniques - which brought DNA amplification to labs that could never have used it otherwise. No, for William James, who coined the term as part of the truly American philosophy of pragmatism, cash value was the cornerstone of ethical science: Science is good, he and John Dewey opined, when it works. Activism on behalf of vulnerable scientists and endangered people is just the sort of translation that scientists in training can point to as ethical genius.

Today Harris runs the Sustainable Sciences Institute in San Francisco, a nonprofit she began with the money awarded through her McArthur prize. The Institute teaches scientists what she calls "knowledge-based" technology transfer. So for DNA amplification, instead of $100 for silica particles, she teaches scientists in the developing world to begin with "a 20-pound bag of ceramic dust for $5 at the hobby store," and thermocycling based on ice, Bunsen burners, and somebody holding a thermometer. A device that costs $10,000 in even its most rudimentary form in the developed world is suddenly within reach of scientists whose entire programs would otherwise be impossible...

[Read the Rest of the Article]

Labels: ethics in science, Eva Harris, heroes, MacArthur Genius Grant, patent violation, PCR

Sometimes Justice Triumps

Bioethics schmethics. Consider these scores from this past weekend!!

Seattle 21 Dallas 20:
Best finish to a game in a long time

Eagles 23 NY Giants 20:
No more need be said
-Art Caplan

Labels: football, justice

Windows [on] Nigeria: Is Bioethics' New Benefactor Conflicted?

Where there is money there are conflicts. Accepting money from the Gates Foundation carries ethical consequences, as noted in the LA TImes:

Ebocha, Nigeria — Justice Eta, 14 months old, held out his tiny thumb.

An ink spot certified that he had been immunized against polio and measles, thanks to a vaccination drive supported by the Bill & Melinda Gates Foundation.

But polio is not the only threat Justice faces. Almost since birth, he has had respiratory trouble. His neighbors call it "the cough." People blame fumes and soot spewing from flames that tower 300 feet into the air over a nearby oil plant. It is owned by the Italian petroleum giant Eni, whose investors include the Bill & Melinda Gates Foundation.

Justice squirmed in his mother's arms. His face was beaded with sweat caused either by illness or by heat from the flames that illuminate Ebocha day and night. Ebocha means "city of lights."

The makeshift clinic at a church where Justice Eta was vaccinated and the flares spewing over Ebocha represent a head-on conflict for the Gates Foundation. In a contradiction between its grants and its endowment holdings, a Times investigation has found, the foundation reaps vast financial gains every year from investments that contravene its good works.

In Ebocha, where Justice lives, Dr. Elekwachi Okey, a local physician, says hundreds of flares at oil plants in the Niger Delta have caused an epidemic of bronchitis in adults, and asthma and blurred vision in children. No definitive studies have documented the health effects, but many of the 250 toxic chemicals in the fumes and soot have long been linked to respiratory disease and cancer.

"We're all smokers here," Okey said, "but not with cigarettes."

The oil plants in the region surrounding Ebocha find it cheaper to burn nearly 1 billion cubic feet of gas each day and contribute to global warming than to sell it. They deny the flaring causes sickness. Under pressure from activists, however, Nigeria's high court set a deadline to end flaring by May 2007. The gases would be injected back underground, or trucked and piped out for sale. But authorities expect the flares to burn for years beyond the deadline.

The Gates Foundation has poured $218 million into polio and measles immunization and research worldwide, including in the Niger Delta. At the same time that the foundation is funding inoculations to protect health, The Times found, it has invested $423 million in Eni, Royal Dutch Shell, Exxon Mobil Corp., Chevron Corp. and Total of France — the companies responsible for most of the flares blanketing the delta with pollution, beyond anything permitted in the United States or Europe.

-Art Caplan

Labels: Conflict of Interest, ethics of bioethics, Gates Foundation, Nigeria, pollution, vaccination

Pellegrino to Ali G: "No, It's Not the Youth in Asia. And Breast Reduction? Well..."

There are those three or four people you see on television all the time pontificating about bioethics, whether about 67 year-old mothers or children consigned to permanent childhood. For shame. Ah for the days of yore when philosophers and physicians refused to give sound bites. Where are the great ones, those academics who would never do media. Wait. They're on HBO.

Labels: Ali G, Edmund Pellegrino, media and bioethics

Got Sperm?

From the Austin, Texas Craigslist:

Do you have sperm?

Reply to: pers-257738127@craigslist.org

Date: 2007-01-04, 6:43PM CST

Attention Austin gentlemen!

My name is “Katherine” and I am a 38 year old single woman. I have been on a 15 year search of a husband to no avail. I was eager to marry so I could start a family; however, have recently set the search of marriage aside for a greater one, the one of becoming a mother.

Where you fit in:

Two words: Baby lust. I desperately want to have a biological child. Therefore, I am in search of a sperm donor...the old fashioned way! I am willing to pay you $2000 for the first time encounter, and $500 for each additional encounter, in the event the previous one(s) did not take. This encounter would be dependent on my monthly ovulation cycle.

Qualifications:

I am looking for a man (married, unmarried, I don't care!) who is healthy and attractive between the age ranges of 18 and 45. I do ask for results of a recent AIDS test; preferably in the last 3 months. I am open to a heterosexual or homosexual man. Given that I am determined to become pregnant through intercourse, we will have to have sex. If you are a homosexual man, I am open to options for your arousal such as pornographic material or sex toys in order to reach the needed erect state. I also remain open to other such as bringing your partner and allowing you to do what you do, and when you are ready to ejaculate is when I’ll step in. Physically I consider myself a head turner. I am a petite size 4. I have black hair and blue/green eyes plus a nice smile. A lack of husband does not mean lack of suitors; but I am not in the business of being deceitful on my quest for a child.

Labels: sexuality, sperm donation

Is Peter Pan Treatment a Moral Choice? No.

Art Caplan writes on MSNBC that the Pillow Angel treatment is inappropriate and a product of a bad healthcare system:

Ashley, a 9-year-old girl in Washington state, will never grow up. She has no breast buds or milk glands. She has no uterus. She will not grow taller than 4-1/2 feet. What is startling about her plight is that Ashley was made this way by doctors at Children's Hospital in Seattle.

Following a request from her parents, doctors there surgically removed her uterus and newly-forming breasts and began treating her with high doses of estrogen to ensure that Ashley would forever remain a child. Why would Ashley's parents and doctors decide to have their daughter, like Peter Pan, never grow up? And why would doctors agree to use their surgical skills and drugs to stunt a child's normal development?

Ashley's doctors wrote an article answering those questions last fall. They noted that Ashley, whose last name has not been made public, is far from normal. She has a rare brain condition known as static encephalopathy. She cannot walk, talk, move or swallow food. It is not clear whether her damaged brain can recognize her parents or her siblings. The doctors said that Ashley's parents came to them deeply concerned about how they would be able to manage their daughter as she grew older, bigger and heavier. The solution they seized upon, unprecedented in the history of medicine, was to use hormones and surgery to keep Ashley forever a child.

If she remains small then her parents can move her easily from place to place. By remaining small she can interact more with the rest of the family who can take her around the home and to outside events. She won't have to deal with monthly periods. She may have a lower risk of getting raped and pregnant. She will not have breasts that might make it uncomfortable for her to lie in one place for long periods of time.

Now Ashley's parents have spoken up as well. They explain their thinking in their recently posted blog. By keeping Ashley small, they can bathe her, move her about in a stroller and help her avoid developing bed sores. With no breasts she may be a less tempting target for any future male caregivers. And she obviously will not face the risk of breast cancer. The key point the parents make is that they decided to keep their child permanently as a child for her own good.

I understand the parents' logic. And I can even understand how a medical team might come to agree that a person who cannot move will have a better life small than big. But I think the Peter Pan option is morally wrong.

I believe it is true that it is easier to move Ashley about if she is the size of a 6-year-old. But I also believe that a decent society should be able to provide appropriately sized wheelchairs and bathtubs and home-health assistance to families like this one. Keeping Ashley small is a pharmacological solution for a social failure - the fact that American society does not do what it should to help severely disabled children and their families.

True, it may be better if Ashley does not become sexually developed in terms of protecting her from attack. But that can be said of any woman. To surgically remove her breasts is simply to maim her in a way that ought not be done. She needs a safe environment at home and if the day comes, a safe environment in an institution. Lopping off her breasts to keep her safe cannot be the right or the only answer.

There are many parents and families who deal with severely disturbed children and adolescents. More then once a parent of a child with severe autism has told me they do not know if they can physically manage their child. Others worry about their children harming themselves or others due to their mental illnesses or disorders.

The problems Ashley and her parents face are terribly real. But permanently freezing a person into childhood is not the solution. Families like Ashley's need more help, more resources, more breaks from the relentless pressure of providing care and some hope that their daughter can be somewhere safe and caring after they are gone.

America has not yet made that promise to Ashley or her parents or the many other parents and kids that face severely disabling mental illness and impairment. We should.

Labels: Ashley, permanent childhood, static encephalopathy

Organic Sour Grapes

If it were not for organic chemistry, I would be a doctor today.

Oh, I turned out okay. Murdered a few billion fruit flies watching legs spring from their heads, for which I earned a PhD in genetics. Lectured students, counseled patients. Cranked out articles and textbooks read by, ironically, doctors-to-be. Paradoxically, I even did a stint as a pre-med advisor at SUNY Albany. Today I satisfy the MD within by volunteering for two hospice organizations.

An article by Ezekiel Emanuel in a recent Journal of the American Medical Association about the evolution of pre-med requirements, and the correspondence it inspired, sent me back to those harrowing days when “organic” meant a killer college course and not a pesticide-free vegetable. The scene: SUNY Stony Brook, circa 1973. Hundreds of we the last cohort of true hippies, after years of being brainwashed that the alternative to medical school was death or at least disinheritance, sat stuffed into a lecture hall, watching overheads of C’s and H’s and O’s flash before our sleep-deprived eyes much faster than a cannabinoid-soaked human brain could perceive. After, we’d duly line up at the lone copier in the library and then truck stacks of incomprehensible lecture notes depicting said C’s, H’s, and O’s back to our dorms, where some of us might try to make some sense of it. Seeing the professor for help was a joke – the lines were too long. My grades in the lecture course earned me the nickname “D orbital”. Yet somehow I managed to get A’s in the lab, despite the efforts of one notorious Keith M., who would not-so-surreptitiously spit into the experiments of others to eliminate competition.

If organic chemistry was meant to “thin the herd” of medical school applicants, it sure worked on me. Despite my sour grapes, I’m not sure this unnatural selection actually picked the very best people to take care of the sick. The article in JAMA, 30 years too late, seems to agree. Dr. Ezekiel Emanuel’s new recipe for a premed education:

DROP organic chemistry
physics
calculus
ADD psychology
genetics
molecular biology
biochemistry
ethics
statistics

He urges that medical schools cooperate to institute these changes, and that the MCAT follow.

One of the letters challenging Dr. Emanuel caused me to reconsider the value of organic chem, albeit fleetingly for I still occasionally have nightmares featuring Morrison and Boyd, the classic organic textbook author team. Daniel Kramer, MD, of Massachusetts General Hospital, pointed out that organic chemistry teaches one to recognize patterns and apply a set of rules to new situations to solve complex, multidimensional problems. It all made sense, but I was so much younger then, I’m older than that now. My 19-year-old brain was too panicked with exiting the D orbital to see any inherent value in problem-solving with a bunch of CHO’s, let alone discern a life lesson in applying those skills.

Dr. Emanuel’s recommended changes may solve the worst part of the traditional pre-med path – the chemistry, physics, and calculus left no time for anything else. Instead of history and philosophy and art and music, we bio majors of times past were stuck fulfilling our mostly useless and endless requirements. We were in lab when our pals tore up the dorms. And so today, I don’t know much about history, don’t know much about the French I took, etc. etc., to quote the old song that ironically starts “don’t know much biology” – the one thing I know perhaps too much about. My kids can walk through an art museum and identify everything; I haven’t a clue.

If Dr. Emanuel’s recommendations had been in place at SUNY Stony Brook circa 1977, I’d be an MD today. But I’m glad I took a road less traveled.

Meanwhile, as premedical training finally reinvents itself, I have to wonder, how many of you out there would have been doctors but for Organic? Shall we form a club, the Organ-nots? What have we become, those of us once deemed too dim to master medicine because we couldn’t tell an aldehyde from a ketone? Let me know! (by email) Maybe I’ll write an article!
- Ricki Lewis

Labels: Ezekiel Emanuel, medical education, pre-medical curriculum

Martina Navratilova: "Leave Gay Sheep Alone."

Scientists in Oregon are experimenting with changing the orientation of gay rams, and the response has been fierce. It seems biological experiments on sexual orientation are, perhaps with those on race, one of the few remaining areas of scientific ideological taboo.

Researchers argued that sexual orientation is an aspect of human sexuality that is a valid area of scientific interest. Opponents argued that the research is homophobic, and Martina Navratilova faxed letters to the presidents of both Oregon universities involved, charging:

How can it be that, in the year 2006, a major university would host such homophobic and cruel experiments? ... I respectfully ask that you pull the plug on this appalling and misguided research. Surely you can find a way to redirect the millions of public tax dollars that are being wasted on these experiments to a more fruitful venture-perhaps by funding a gay and lesbian community center to foster dialogue and acceptance for people of all sexual preferences?

There is still "forbidden knowledge" in science -- see Kempner, Perlis, and Merz in Science in 2005. Clearly, there is basic science that should not be done (trying to construct a more virulent virus, for example) and science that can be misused or misinterpreted (exploring the roots of sexual orientation). But the second does not necessarily imply the first. Most troublesome, and the reason to give some support to Navratilova's complaint, is that the grant application does suggest that the researchers hope to "extrapolate" the results to human beings -- and so implicitly suggest that they are looking for a way to prevent or alter a homosexual orientation. Snd we all know there are plenty of people in the US, and regimes in the world, that might jump at the chance to use a technology that would minimize or prevent the birth of gays and lesbians. Still, it is a controversial question whether the best strategy is to ban the science or battle the prejudices.


- Paul Root Wolpe

[A reader comments: "Jim Newman here from the university actually conducting the research.

In regards to the Sunday Times article which is the source of all these wild conspiracy theories, I am pleased that a writer has thoroughly investigated the article. As he reports, the Sunday Times article is filled with major errors and false claims. His analysis also raises important questions about the timing of the article which comes almost five years after the research was actually conducted.

Here’s a link to that analysis that anyone who is interested in this topic should read:

A wolf in gay sheep's clothing: Corruption at the London Times
(link)."] More letters below.

Labels: homophobia, sheep

Nigel Cameron is Very Concerned

Here's Nigel Cameron's new blog, fresh into its fourth post. Cameron is not your standard-issue neocon/Kass ethicist, nor standard-issue pro-life scholar, or for that matter standard-issue academic bioethics scholar, though he can play all three on TV. He's pretty thoughtful, and this is a medium that requires scholar-writers to be thoughtful - or demonstrate how thoughtless you are - very quickly. Check it out now - because Nigel is very concerned about big issues, and he's listening to others. I know, because this picture is on every page of the blog!

Labels: neocon bioethics, new blogs, Nigel Cameron

We're Alive. Really.

You may have wondered what became of our fair blog. Well here's the answer: the server died. We could show you what we have, but not add to it. Actually, it was worse than that, we could post new things, but not get our server (bioethics.net) to accept the posts up online. So now we're back up, with our rag-tag Blogger software, ready to go. Look for our end of 2006 wrap up articles, support acknowledgements and "best posts of the year" list tomorrow. After that who knows!

Labels: technical problems