Tuesday, December 18, 2007

5 Books

It's that time of year again - festive lights, holiday smells, music, family. Of course, sometimes getting a lot of that requires the other thing this time of the year is known for: long lines at the airports, delays, layovers, crying children, extremely cranky TSA agents who don't take kindly to your traveling with a bunch of books on bioterrorism, and the definite need for some decent airplane reading material.

So without further ado, five recommendations of bioethics-related fictional books that I'd recommend to just about anyone. Some are very new, some are old, but all of them raise interesting issues wrapped in fictional fluff.

I Am Legend by Richard Matheson
Of course, it's hard to escape the name of this book right now, since the Will Smith movie by the same name just opened to the largest December box office ever, smashing the third installment of the Lord of the Rings by several million dollars. The Smith vehicle is actually the third remake of Matheson's classic novel (the first was the 1964 movie The Last Man on Earth and the other Heston's The Omega Man), but it is, from all accounts, the most accurate.

And movies are fine and good, but the original novel is well worth reading. Yes, it's a vampire science fiction novel, but the vampires are not Lestat; there's no dripping lace and pathos here. Instead, wrapped in the horror of plague and desperation is a thoughtful look at what it means to be normal, how we define different, and what we do about it.

Written in 1954 and set in 1976, some aspects of it are dated in ways you would expect, but it holds up much better than other science fiction/horror novels of its day. If you like Heinlein, Koontz, or King - an admittedly unusual group to see bunched together - or recent zombie movies like 28 Days Later, this is a must read.


The White Plague by Frank Herbert
Yes, that Frank Herbert, who brought us the spice, also wrote one of the first books on genetically engineered bioweapons. It is one of several books that I will pull off the bookshelf every year, just to reread and enjoy. Given it's content, it's probably strange to admit that this book is like comfort food.

And what is it's content? A very simple premise. What if women were an endangered species? What if someone, a renegade scientist driven mad, decided all women must die, and genetically created the virus to do it?

What would happen to society? How would religion, culture, politics shift and change in the face of the decimation of half the world's population - and the potential demise of the entire human race?

The book discusses all of this, but also addresses the potential for anyone with a modicum of skill to create disease. It takes a very precise epidemiological approach to distribution and spread of the virus, where are the vulnerabilities in our society that would allow infection to race unchecked, and perhaps most importantly - what in the world do you do in that sort of nightmare situation?

It's a thriller, a horror, a science fiction book - but also a mystery, so I'm afraid if I said anymore, I'd spoil it for everyone. But I can't think of a more ringing endorsement than "I read this at least once a year."


The Footprints of God by Greg Iles
How many fictional books, off the top of your head, can you think of that feature, as their main character, a professor of ethics? Chances are, if you haven't read this book, your answer is simple: none. (And if I'm wrong in this, please let me know.) And on the face of it, it's kind of understandable why: an academic isn't terribly interesting, and I'm not certain watching any of us sit around our offices and work, day in and out, would be at all fascinating. But Iles manages to pull this off, in the compelling character David Tennant, professor of ethics at the University of Virginia Medical School. Dr. Tennant is working on for the government on a top secret research project known as Trinity. They are attempting to build a quantum-level supercomputer, run by a neurological operating system.

And when that neurological operating system wakes up, everything goes to hell, and it's up to the ethicist to make it right.

But beyond a simple thriller in the vein of National Treasure, where an academic must step out of their comfort zone and become a hero, Iles infuses The Footprints of God with sophisticated philosophical and ethical questions about the nature of existence, man, and God.


Next by Michael Crichton
Until about 3 months ago, a list like this wouldn't have included any Crichton books for me. I have been - and still am - a fan of Crichton's earlier work, from the classic The Andromeda Strain to more contemporary works like Jurassic Park. But somewhere along the way, he segued into a thriller-esque genre more remniscent of Koontz-ean horror novels or the thrillers by Clive Cussler than the interesting technological and medical books he'd written in the past. Apparently my discontent grumblings were heard by someone, because the last few Crichton books have been a return to his roots, of technology, medicine, and the potential for great achievements and great harm they have.

It was a tossup between this book and Prey, but ultimately Next swayed me. Primarily because I read it on the plane this morning, I think - devoured it, really, reading the entire thing on the flight between Albany and Chicago. I simply couldn't put the book down. It has a complicated story arc of many more characters than you typically see in a fictional book, and the size of the book reflects this. Each story is slowly woven in to the stories around it, until everything merges together into a satisfying, yet simultaneously not over the top, finale.

At it's core, Next is about genetic engineering, corporate politics, and the history of research medicine. He very, very skillfully weaves in fact with fiction - in fact, the disclaimer says that everything in the book is fictional, except the stuff that isn't - and many people might simply assume it's all fiction.

What all? Crichton takes us on a history of the Bayh-Dole act, John Moore's spleen, the UCLA genetic empire, patenting genes and the race to patent, media sensationalism (such as the oft-repeated fear that blonde's will become extinct), the concept of single gene causes for anything from God to gay, decoding the human genome, gene banks, tissue theft, illegal bone harvests - the list goes on. Chances are good, if it's biotech and there has been a story about it in the last ten years, it's in this book.

And that in itself is half the fun - to read the book and recognize the homages, the send-ups, the pokes, and references. To say "hey, he's redoing the Moore case!" or "hmm, that researcher sounds suspiciously like..." - it becomes a fun game of guess the insider knowledge.

But from everyone I've talked to, if you don't have that knowledge, this is still a fun book. It's surprisingly educational and still entertaining; if Crichton was hoping to write a book that would educate the general public on very complicated science matters while still entertaining those who are "in the know", he did a fabulous job.


Darkness Falls by Kyle Mills
This last book dropped into my lap by happenschance, but the description caught my attention and I found myself devouring it on my last cross-country flight, back in October. For those of you who are familiar with Mills' work, Darkness Falls brings back his FBI protagonist Mark Beamon, but it doesn't read like any typical sequel that assumes knowledge of the character. Instead, the book stands solidly on its own, focusing on two other main protagonists.

The first is a maverick and radical environmentalist, Erin Neal. Neal is such not because he is radically anti-corporation, or inclined to chain himself to trees, but because he is a scientists who managed the neat trick of pissing off both conservatives and liberals with his no-holds barred book on oil reserves, energy consumption, and genetic engineering to manage the world's power supply/oil reliance problems.

But after the death of his lover Jenna Kalin, who moved from being an active part of environmental conservation to ecoterrorist, Neal stopped his work in the oil fields, dropping off the grid and out of sight. Until, that is, a bioengineered bacteria begins appearing in the world's oil fields, and Beamon bring Neal in - to determine if he's the cause of the genetic engineering, or can if he can help.

Mills uses this book to tackle a different sort of bioweapon - one that attacks a resource and not humanity. When we discuss bioterrorism, we tend to focus on the person and not the other ways we can be attacked and made vulnerable. Oil reserves, food supplies, water sources - all of these are at as much risk as anything else, yet we simply don't talk about it. And with our reliance on both internationally shipped agriculture and oil for everything from insulating wires to food to gasoline, it is an area of serious vulnerability.

The book, of course, covers much more than this, and again encompasses your typical thriller and action material. But the fact that it goes deeper is significant; it's well done, well written, and very thought-provoking. If you were a fan of Michael Pollan's The Omnivore's Dilemma, this book is a must read for you.

Check back later this week, when I'll give a rundown of top recommended non-fictional books, which ought to be a much harder suggestion list to make!
-Kelly

Pollan on Pollen-Patties and Porcine MRSA

Michael Pollan critiques the lip service paid to the word "sustainability" and shines a light on two larger crises that have roots in our food production system: "Our Decrepit Food Factories". (NYT)

He suggests that the rise of "community-acquired MRSA" (infections not from hospital exposure) stems from our excessive use of antibiotics in raising livestock, especially pigs. With 70% of the antibiotics used in America being fed to our livestock, it is certainly feasible that we are cultivating tomorrow's disease even as we grow today's dinner (UCS). What is so ironic is that comparisons between CAFOs (Confined Animal Feeding Operations) with humanely grown livestock end up with comparable cost-gain ratios, with the former spending less money on animal welfare and more on survival tactics like antibiotics, while the latter pays more up-front for smaller-scale operations but has considerably lower costs when fewer animals become ill from poor conditions. Not only should this serve as a call for a paradigm shift in how we expect our food to be produced, but it also shows a severe failure on the part of the FDA and other public health entities in letting this issue fall into their corporate-induced blind spot.

Pollan also explores the current decimation of our honeybees due to Colony-Collapse disorder, and points out the extreme stress that commercial monocultures like almond growing places on the bees. The stress reduces the effectiveness of their immune systems, and unchecked mingling of large numbers of hives from across the country at almond groves increases the chance of being exposed to viruses like Israeli Acute Paralysis Virus (implicated for causing CCD). In China, there are no more honeybees, and the only thing keeping their agricultural system running is a caste of nearly slave-class people whose job it is to hand-pollinate flowers of fruit trees. Fortunately for China (and for us, since much of our produce, including apples, is imported from there), they don't worry about niggling issues like worker rights and workers' compensation.

The running theme throughout stories like these are that the commodification of organisms and the hubris of complete disregard for the integrity of natural systems of checks and balances could be the source of our downfall. The irony is that each step we take to try to reassert our mastery of Nature is driving us further into this mire of public health threats and looming collapse of the agricultural economy.

Pollan concludes with this:

We’re asking a lot of our bees. We’re asking a lot of our pigs too. That seems to be a hallmark of industrial agriculture: to maximize production and keep food as cheap as possible, it pushes natural systems and organisms to their limit, asking them to function as efficiently as machines. When the inevitable problems crop up — when bees or pigs remind us they are not machines — the system can be ingenious in finding “solutions,” whether in the form of antibiotics to keep pigs healthy or foreign bees to help pollinate the almonds. But this year’s solutions have a way of becoming next year’s problems. That is to say, they aren’t “sustainable.”

From this perspective, the story of Colony Collapse Disorder and the story of drug-resistant staph are the same story. Both are parables about the precariousness of monocultures. Whenever we try to rearrange natural systems along the lines of a machine or a factory, whether by raising too many pigs in one place or too many almond trees, whatever we may gain in industrial efficiency, we sacrifice in biological resilience. The question is not whether systems this brittle will break down, but when and how, and whether when they do, we’ll be prepared to treat the whole idea of sustainability as something more than a nice word.


(Additionally, Pollan has a new book soon to be released: In Defense of Food: An Eater's Manifesto.)

Bioethics Throwdown!

How's this for a bioethics throwdown?: Ron Green vs. Michael J. Sandel
Carlin Romano of the Philadelphia Inquirer writes about "Two polar, persuasive stands on reproductive genetics." A review of Green's Babies by Design: The Ethics of Genetics Choice vs. Sandel's The Case Against Perfection: Ethics in the Age of Genetic Engineering .

One thing they both agree on -- that: "We all need much greater literacy in the ethical concepts and scientific information necessary to make informed decisions about these choices, especially given, as Green reports, 'how fast the science is moving.'"

To read the whole review, click here.

Monday, December 17, 2007

Why progressive technologies are important

"Scientists seek to help 'locked-in' man speak"

As soon as I read this article, I knew three things instantly. First, enhancement and progressive technologies are important and merit serious consideration. Second, this is why I am involved with organizations examining the ethics and real-life implications of enhancement technologies, such as the Institute for Ethics and Emerging Technologies (IEET). Third, I need to purchase The Diving Bell and the Butterfly by Jean-Dominique Bauby.

Well, I've purchased the book and it is a wonderful expression of the human will and mind. It has been an inspiration for my support and understanding of progressive and enhancement technologies that are being worked and thought on right now. For now, I will digress to focus on the specific enhancement technology discussed in this article.

That focus is mapping the brain as vowels and consonants are thought or spoken so that 'locked-in' individuals may speak. This enhancement, purely in conversation, seems impossible, but in actuality, the scientists have already made progress. This progress means these individuals who are 'locked-in' their bodies will finally be able to communicate with the outside world.

Thoughts abound on what that means for the rest of us if this succeeds. Going back to my first thought, progressive and enhancement technologies are important, not just for those they first impact but for the rest of us too.

Semen has Manly Enhancement Factors for HIV

Scientific American reports on a recent study that indicates semen appears to have a peptide that enhances the ability of HIV to infect cells 50- to 1000-fold. (The normal increase observed by enhancers is two to three times)

Excerpt:
Kirchhoff and his team screened through many of the 900 proteins found in seminal fluid in their hunt for potential inhibitors and enhancers of HIV transmission. Among the enhancing factors uncovered were fragments of a protein called prostatic acid phosphatase that is secreted by the prostate gland. An analysis of the peptide's structure in semen indicated that it hooked up with similar fragments to create amyloid fibers (clusters of protein fragments that have also been implicated in diseases such as Alzheimer's). The scientists refer to the amyloid fibers as "semen-derived enhancer of virus infection" (SEVI). If they do not link to become fibers, the researchers report, the peptide segments remain inactive and do not enhance viral transmission.

When assembled, however, these fibers then act like ferries, trapping and shuttling HIV virus particles to target cells. The researchers found that HIV spiked into semen was more successful than the virus alone at infecting T cells and macrophages (immune system cells that are believed to be the infection's initial targets in the body). They also tested the threshold of virus needed to infect human tonsil cells, noting that in the presence of semen, far fewer HIV particles were needed for transmission.

Researchers injected both the naked virus and SEVI-treated HIV into the tails of rats that had been given human immune system cells. The HIV with the semen component was five times more effective at transmitting the virus. In situations where low levels of virus are transferred—as during intercourse—Kirchhoff says, SEVI can make HIV up to 100,000 times more likely to spread when compared with the virus alone.

(Yes, the title of the article is amusing.)

This suggests new directions for research into HIV prevention that focus on men's physiology rather than on women's. I hope this will result in a paradigm shift that does more than tell women to "just say no" to sex and shares the burden of HIV transmission more equitably between men and women. Oddly enough, this is reminiscent of the potential paradigm shift that must have happened when it was discovered that men, and not women, were responsible for the sex of their offspring (rendering all those executions of wives who "failed" to bear sons completely erroneous). Or, even better, we will be able to leave the moralistic "blame game" behind completely and focus on what actually works: access to condoms and medically accurate sex education and actual legal and societal empowerment of women to enable them to be proactive actors rather than passive defenders regarding their health.

Creation of New Life Forms: the next step for DNA?

This article fascinated me. Scientific breakthroughs, especially revolving around the use of DNA science--and the ethics of it--always gets my attention. But this article was a mixture of fascination, awe--and fear. There also remained the lingering question in my mind of whether this could really be true--that researchers are indeed considering taking this next step--or if just simply a rumor spawned by someone's overactive imagination.

You can read the Washington Post article, and decide for yourself: whether the prospect of creating new life forms--synthetic life forms--from artificial DNA should be considered a scientific breakthrough--or a major mistake, and what questions it raises about science, religion, ethics and the very essence of genetics.

Sunday, December 16, 2007

Birth Control to Reduce HIV in Africa

I don't know which to be more horrified about in this article entitled the 'Best-Kept Secret' for HIV-Free Africa:

- that researchers realize that birth control can have a great impact on reducing the number of children born with HIV in Africa, but they can't do anything about it, because of the PEPFAR's ban on distribution of contraceptives or family planning;

or the sentence where women are treated like a piece of property: "The man who, in accordance with local tradition, inherited her after her husband died refused to use condoms";

or the comments to the article that say that this is not 'our' (read 'America's') problem. As if we lived in a bubble.

It is a painful reminder of just how far we still have to go when it comes to basic human rights and mankind's inhumanity to man (and woman).

Rewarding the Kindness of Strangers (or Friends or Family Members)

While we wrote about Ashwyn last week and whether or not he was unduly influenced to give up a kidney, Sally Satel, a psychiatrist at Yale writes today in the NY Times magazine about desperately seeking a kidney and how her hopes for finding a donor were raised several times only to be dashed at the last moment because the donor changed his/her mind.

As a result of her experience, Sally is urging wherever she can — "in articles, in lectures, from assorted rooftops — that society has a moral imperative to expand the idea of 'the gift'" and to reward the kindness of donors.

She writes, "Altruism is a beautiful virtue, but it has fallen painfully short of its goal. We must be bold and experiment with offering prospective donors other incentives for giving, not necessarily payment but material reward of some kind — perhaps something as simple as offering donors lifelong Medicare coverage. Or maybe Congress should grant waivers so that states can implement their own creative ways of giving something to donors: tax credits, tuition vouchers or a contribution to a giver’s retirement account.

In short, we should reward individuals who relinquish an organ to save a life because doing so would encourage others to do the same. . . But unless we stop thinking of transplantable kidneys solely as gifts, we will never have enough of them."

Seems like a very sensible solution, and something we in the bioethics field having been talking about since the 80's -- but can we convince Congress to do something about it?

watching the cats that glow in the dark

A video followup to the posts about glowing cats:


-Kelly
[cross-posted to the AJOB blog]

A Smart Bra

A few years ago, researchers in Australia entered the "smart bra" market, trying to design a bra made of intelligent fabrics that would change the strength of its fabric, stiffen or relax cups or tighten and loosen straps as needed. This was primarily going to be for very large chested women who needed the support, especially while working out.

Well, now another researcher is working on a smart bra design, only this one is for detecting breast cancer. The UK researchers are using
a series of microwave antennae to detect temperature changes in the breast that point to early stage breast cancer.
This is known as thermography, and the hope is that the temperature change will spot tumours before they grow and spread to the surrounding tissue. The microwaves are passive - the same sort used in astronomy or in detecting submarines - not harmful to individuals (which I'd hope wouldn't have to be said, but sometimes...) - and the bra itself would chime a little alarm when wearers needed to see a doctor due to potentially dangerous changes.

Now granted, it's still in the design stage, and there are concerns over whether or not the alarm would be triggered by false positives (nonmalignant changes in breast tissue, for example), or if it would be truly effective in catching cancerous growths before they advanced far enough to be seen by a mammogram or felt during a breast exam. And beyond the practical functionality, there's a cost issue.

While this isn't addressed in the articles I've read on the subject, I would be concerned about the exclusivity something like this would naturally have. I can't imagine it would be an inexpensive device to wear, so it would lock out a large segment of the population for whom it might be most beneficial - those who can't afford yearly exams and screenings. But then again, given the recent study that showed how many cases of cancer radiologists miss, it would still be a good thing - just for a more limited group.
-Kelly

Saturday, December 15, 2007

Season of Giving: Should Ashwyn be allowed to donate his kidney?

An excerpt from this week’s WSJ touches on so many of the issues we face surrounding organ donation: informed consent, potential exploitation, donor motivation, as well as the very real problem of organ shortage.

What do you think? Should Ashwyn be allowed to donate his kidney?


For Religious Group,
True Charity Begins 
On Operating Table: Sect's Kidney Donations Pose Dilemma for Doctors - A Member's Mom Objects

By LAURA MECKLER
December 13, 2007; Wall Street Journal, Page A1

Ashwyn Falkingham wanted to donate one of his kidneys but didn't know anyone who needed one. With the help of a Web site, he met a woman in Toronto who was seeking a transplant. The two were a medical match, and he traveled from his home in Sydney, Australia, to Canada for final testing and, he hoped, for the surgery. It's a "simple thing that can help someone," says Mr. Falkingham, now 23 years old.

But it wasn't simple, largely because Mr. Falkingham is a member of a tiny religious group calling itself the Jesus Christians. The group's 30 members, who eschew many of society's conventions, have embraced kidney donation: More than half have given a kidney. They describe the act as a gift of love that implements Jesus's teachings. But critics, particularly parents of members, call the group a cult and charge that members are under undue influence of its charismatic leader.

In the end, the hospital in Toronto had to decide whether Mr. Falkingham's offer was a simple expression of altruism, as he had represented it to be, or an offer from a man no longer capable of independent thought, as his mother and stepfather alleged. More than 460 people have given kidneys anonymously in the U.S. over the past decade, and many others have donated to strangers they met online, amid a huge shortage of available kidneys. Nearly 75,000 people in the U.S. are waiting for kidney transplants. Many hospitals aren't interested in donors who don't have an established, personal relationship with the recipient. That is partly because of fears that such donors may be secretly -- and illegally -- paid. Other concerns: Stranger donors may be psychologically disturbed, unrealistically hopeful that donating a kidney will improve their own lives, or likely to back out.

The University of Minnesota has handled 42 transplants involving anonymous donors, including two Jesus Christians. Catherine Garvey, a transplant coordinator there, says neither case caused concerns. "There's definitely a religious reasoning to it," she says, "but people often quote a spiritual or religious reason."

Friday, December 14, 2007

The Real Science Behind Fertility

You are what you eat...and so apparently is your ability to become fertile. That's according to a recent study done by Harvard doctors, whose findings suggest an apparent connection between women's diets and fertility.

Published last month in the journal Obstetrics & Gynecology, the study found a growing body of evidence linking diets to hormone levels particularly insulin, which impacts fertility.

This Los Angeles Times article details the study's findings and recommendations.

Deadly (Mis)Diagnosis

After nine years Audrey Serrano is a "free" woman.
A jury has awarded her $2.5 million in damages for HIV treatment she received over those nine years--powerful drugs she was given to treat an illness she does not have.

Serrano filed suit against the doctor who treated her, following a second diagnosis that revealed no presence of HIV in her blood. The misdiagnosis was based, according to Serrano's attorney, on presumptions by her former doctor about Serrano's lifestyle that tend to be associated with patients more likely to have HIV and AIDS.

See details of what's being called an "astonishing" case in this article from the Washington Post.

Why Look for God in the Brain?

If you've ever wondered which came first (does the brain physiologically induce spiritual experience? or do spiritual experiences physiologically affect the brain?), an article in Scientific American explains that it may not be such a crucial question:

"Such efforts to reveal the neural correlates of the divine—a new discipline with the warring titles "neurotheology" and "spiritual neuroscience"—not only might reconcile religion and science but also might help point to ways of eliciting pleasurable otherworldly feelings in people who do not have them or who cannot summon them at will. Because of the positive effect of such experiences on those who have them, some researchers speculate that the ability to induce them artificially could transform people's lives by making them happier, healthier and better able to concentrate. Ultimately, however, neuroscientists study this question because they want to better understand the neural basis of a phenomenon that plays a central role in the lives of so many. "These experiences have existed since the dawn of humanity. They have been reported across all cultures," Beauregard says. "It is as important to study the neural basis of [religious] experience as it is to investigate the neural basis of emotion, memory or language."

Author David Biello goes to explain that "Artificially replicating meditative trances or other spiritual states might be similarly beneficial to the mind, brain and body." But don't expect neuroscience to prove or disprove the existence of God, as Biello concludes: "Although atheists might argue that finding spirituality in the brain implies that religion is nothing more than divine delusion, the nuns were thrilled by their brain scans for precisely the opposite reason: they seemed to provide confirmation of God's interactions with them."

The rest of article can be accessed here .

Thursday, December 13, 2007

looking for cats that glow in the dark

Up over on the AJOBlog is a post about the latest in South Korean cloning: cats that have bee genetically modified to glow in the dark. It's certainly coming in under the wire for "coolest things to happen in 2007", but made it.

The practical part of my brain saw the pictures and immediately thought "what a wonderful way to find your cat when it's hiding!" ...but that just might be me.
-Kelly

User Guide: The Ethics of Bioethics

Stem cell research. Drug company influence. Abortion. Contraception. Long-term and end-of-life care. Human participants research. Informed consent. The list of ethical issues in science, medicine, and public health is long and continually growing. These complex issues pose a daunting task for professionals in the expanding field of bioethics. But what of the practice of bioethics itself? What issues do ethicists and bioethicists confront in their efforts to facilitate sound moral reasoning and judgment in a variety of venues? Are those immersed in the field capable of making the right decisions? How and why do they face moral challenge -- and even compromise -- as ethicists? What values should guide them?

In The Ethics of Bioethics, Lisa A. Eckenwiler and Felicia G. Cohn tackle these questions head on, bringing together notable medical ethicists and people outside the discipline to discuss common criticisms, the field's inherent tensions, and efforts to assign values and assess success. Through twenty-five lively essays examining the field's history and trends, shortcomings and strengths, and the political and policy interplay within the bioethical realm, this comprehensive book begins a much-needed critical and constructive discussion of the moral landscape of bioethics. "The Ethics of Bioethics is a milestone in the field of bioethics. It brings together all the right people, asking all the right questions and proposing answers to meet the challenges of our time. Anyone who is paid to do work in bioethics -- and, for that matter, anyone who takes bioethical inquiry seriously -- will need to read this book and engage the issues it raises." -- Matthew Wynia, Past-President, American Society for Bioethics and Humanities (from the book description.)

Death Casts a Shadow in the Classroom

The Chicago Tribune explores the heated life and death debate over the role of schools and DNR orders.

Read Katie's story and decide where you stand on the ethics of medical care for severely disabled/terminal children in the classroom.

Surviving Pioneer: Facing the Future with Courage

It is never easy being the "first". We've all experienced the gripping fear and paralysis that comes with deciding to cross the boundaries that lead us into the unknown. Yet we take the step--because it is worse not knowing what could have been. Especially when we know how dramatically life-changing taking that step could be.

When Isabelle Dinoire lost half her face in a horribly tragic dog mauling two-years ago, there were many who felt she was sentenced to a life of permanent disfigurement. When her landmark face-transplant surgery was later announced by French doctors, the list of detractors and naysayers was lengthy.

But no one can deny the surprising success of the procedure, the skill of her surgical team--nor her amazing courage for taking that first step into the unknown, and making medical history.

This article from the Washington Post traces the many challenges...and setbacks she faced, in choosing to undergo one of the most remarkable experimental therapies of our time.

Wednesday, December 12, 2007

Anorexia: blame in utero hormone exposure?

NYT reports that initial research findings suggest that anorexia may be influenced by exposure to female hormones in utero.

While there may be some connection between female hormones and the way self-perception and self-criticism in the brain occur, I am skeptical of a specific behavioral influence since ideal standards for body weight have varied so greatly over the years. Perhaps there may be a propensity toward being harder on oneself, regardless of the particular aesthetic standards of the time. I would like to see more research on in utero hormonal ties to other mentally-originating disorders, like OCD and depression to see if there is a more systematic effect.

This would be another interesting area of developmental research - the effects of development due to prenatal exposure to different hormones. Several years ago, there were some articles suggesting a connection between excessive androgen exposure and Autism and Asperger's.

To Fortify or not to Fortify, that is the question

NYT reports on the ongoing controversy surrounding regulations that would require U.S. flour to be supplemented with folic acid to prevent birth defects.

I have mixed feelings on this because I am not yet convinced that making folic acid a ubiquitous supplement to a universal staple like flour is has side effects benign enough to make it an ethical policy. There are suggestions that folic acid can mask other health problems, like vitamin B deficiency, making such conditions harder to diagnose and subsequently treat.

Ideologically, this outlook is bothersome in the same way as the CDC recommendation (via WaPo) urging that all women be considered "pre-pregnant" - this attitude is a dangerous one to start subscribing to for many reasons, not just because men make up (nearly) half of the population, but also because there are women who do not wish to have children, and to treat them as if they will can be seen as patronizing and insensitive.

From a cost-benefit perspective, there certainly are benefits to be had by ensuring pregnant women have access to folic acid supplements to avoid this easily preventable class of birth defects, and if there were no risk of side effects from folic acid intake for the general population, then increasing the presence of folic acid could make sense. However, the implied paternalistic statement that women are too stupid or incapable to take an easy-to-consume supplement (orange juice) and that that society will take steps to ensure the health of the ZEF (zygote/embryo/fetus) in her with or without her consent carries dangerous implications; why not also ban all women from activities that pose a clear risk to the ZEF as well? Is there a difference between prescribing and proscribing at this level?

A socio-economic perspective questions whether pregnant women would have at least an average likelihood of using this fortified flour in their diets - given that more and more of the economically disadvantaged population don't cook food at home and instead consume pre-made food, and that pregnant women are often more strapped for time than the general population, wouldn't it be more reasonable to fortify some other food source, perhaps one that pregnant women would be more likely to consume? How about adding folic acid supplementation/access to the WIC program, for example? This program is specifically targeted to women, especially lower income women who may be less aware of and less likely to have access to folic acid supplements - not only does it avoid the frustrations of federal governmental regulation (when the FDA can't even keep unapproved GMO crops out of our food system) and paternalism, but it is a more efficient use of existing resources that already target the group of people we hope to help.

Addendum: Upon further reflection, I wanted to emphasize that there is a whole gradient of possibilities to implement a "folic acid promotion" policy - anywhere from working with one flour producer to make a line of flour enriched with folic acid, to requiring at least one line without, to letting the free market determine how many producers would enrich (and be required to label positively or negatively), to everything in between. If a policy wonk actually wants to compare the relative effectiveness of such programs, be my guest.

Is prettiness your best standard?

There is a pretty spirited debate about male circumcision going on at a NYT blog.

This was partially inspired by a recent blog post supporting female genital mutilation.

Your opinion on whether these are reasonably comparable issues will depend on your moral/ethical framework - comparative harms, consent, cultural relativism, aesthetics, etc. Personally, I subscribe to consent as the paramount value in this situation up until urgent, life-threatening conditions require immediate action. The supposed benefits in STI prevention are not compelling enough to me to justify permanent prophylactic removal of a part of an organ, and the aesthetic concerns expressed by people (especially women) are downright appalling.

One thing I do find interesting is that nary an anti-HPV-vaccination brawler has made a move to oppose circumcision because of the purported benefits in preventing STI transmission. If it is a priority to prevent our girls from turning into wanton harlots because of a vaccine against one STI given at a young age, shouldn't we also be concerned about our boys turning into the same thanks to the magical disease-defying benefits of circumcision, provided at *gasp* infancy?

Study Finds Detecting Breast Cancer Depends on Radiologist

There is a new study on the effectiveness of diagnostic mammograms in actually detecting cancerous masses, and the news is sadly grim. Previous studies have shown substantial differences of opinion in radiologists when viewing screening mammograms (up to 25% of cases), but no one knew if this inaccuracy extended to diagnostic mammograms, situations where women have lumps or other symptoms.

The results are not good - radiologists miss an average of 2 in every 10 cases, with some missing as much as 7 out of every 10. The numbers, for those inclined, from the Chicago Tribune article (registration required), are:
123 radiologists who interpreted nearly 36,000 diagnostic mammograms between 1996 and 2003 at 72 U.S. facilities. All the mammograms had been ordered for women who found a lump themselves or whose doctors discovered something of concern.

The researchers found that sensitivity—the ability to detect cancer when it's present—ranged from 27 percent to 100 percent, with a median of 79 percent. The false-positive rate—women who got a tentative diagnosis of cancer when they didn't have it—ranged from zero to 16 percent, with a median of 4.3 percent.

But even for radiologists at teaching hospitals, median sensitivity was only 88 percent, which means that on average 12 out of every 100 cases of breast cancer in symptomatic patients were not detected.
This is kind of scary. These are women who already have cause to consider breast cancer a risk, be it lump or pain or leaking fluids, and they are still receiving false negatives. And given that the rate of breast cancer is 10fold higher among women with physical symptoms who go in for diagnostic (as opposed to screening) mammograms, you have to wonder how many women who receive those false negatives actually go and get a second opinion? How many primary care doctors insist on a second opinion, period, regardless of the result (but especially if the test result appears to disagree with physical symptoms)?

The results do suggest one clear thing: it's better to have your images read by someone who specializes in diagnostic breast imaging. The radiologists with the highest and most consistent correct reads were those in academic medical centers, and then those who spend at least 20% of their time on breast imaging. Unfortunately, most women in America have their images read by general radiologists in their community; in this study, 1/4 of those radiologists see less than 1,000 mammograms a year.

I haven't been able to access the article itself to read (but Andrea provided the link to the abstract, thanks!), but one other question does come strongly to mind. In the cases where the researchers found radiologists missing as many as 7 out of 10 cases of breast cancer, did the researchers say anything to the radiologists? To the center the radiologists work at? To someone, anyone? Did they track down those women with missed cancer cases who haven't already found out they were mis-diagnosed?

I realize this is a common question when it comes to research ethics, and perhaps my point of view is just too badly skewed by watching my mother die from cancer, but I can't imagine how you could know that people were out there without receiving treatment, going to die because of a missed diagnosis that you know about. And how can you not say anything about the person(s) continuing to risk lives by not being good at their jobs?

-Kelly

Tuesday, December 11, 2007

fast followups

Two quick follow-ups on recent blog posts.

First, a federal judge has thrown out a lawsuit against the Albany, VA, a story Linda originally blogged about yesterday. The widows will have 30 days to decide if they want to appeal.

Secondly, if the spray-on condom story caught your eye, you can head over to this blog, which has arranged an interview with the inventor. Alternatively, you can just watch the below YouTube video of CSI: NY, which demonstrates how a spray can (versus "car wash") style application might work. As we discussed in the comments on that thread, this particular method of application is an interesting idea for covering areas of the genitalia not typically covered by condoms. (For example, I wonder if it could provide protection against something like HPV or herpes, while still allowing a couple to attempt conception without infection?)

Birds Do It.... so do Chimps and Dolphins

Display remarkable intelligence, that is...after spending all of yesterday discussing various aspects of personhood (from embryos to animals to artificial intelligence) at the Terasem conference, this article is timely in illustrating the evidence accumulating on animal intelligence:

'The chimp who outwits humans; the dolphin who says it with seaweed; the existential dog... An elephant that never forgets its extended family, a chimp that can outperform humans in a sophisticated test of visual memory and an amorous male dolphin that likes to say it with flowers -- well, a clump of river weeds to be more precise. These are just some of the recent observations from the field of animal behaviour. They appear to show that there is no limit to the intelligence of animals, but what do we really know about the true cognitive powers of the non-human brain?"

To read the rest of the article, click here. And to see a remarkable demonstration, click here.

South Korea Rethinks Asia's Preference for Sons

[Hat tip to Jay Hughes for this article]: We've blogged about the perils of sex selection and the predicament of fewer girls being born in Asian and Indian countries, but this article brings some hopeful news:

"In the early 1990s, among Korean women who had already borne two or more children, the sex imbalance was as high as 206 boys for every 100 girls. In those times, it was common for married Korean men to feel ashamed if they had no sons, some went so far as to divorce wives who did not bear boys." Full article here.

Monday, December 10, 2007

Healthcare for Veterans under scrutiny in NY -- the 'dark chapter'

The health care system under the Veterans Administration has been investigated and looked at by the bioethics community before, but according to the Times-Union , papers filed recently in a federal court in Albany detail a string of disturbing lapses at the VA Hospital in Albany. AMBI's Glenn McGee has been called as an expert witness and characterized the situation in the VA as a "systematic deception by clinicians in plain violation of medical and research ethics across 3,000 years of the development of such principals."

Ouch -- this is certainly not what our veterans deserve. To read the whole article, click here.

A New Angle on Dyslexia

New York Times reports that an unexpectedly high number of small business owners are dyslexic..

The report, compiled by Julie Logan, a professor of entrepreneurship at the Cass Business School in London, found that more than a third of the entrepreneurs she had surveyed — 35 percent — identified themselves as dyslexic. The study also concluded that dyslexics were more likely than nondyslexics to delegate authority, to excel in oral communication and problem solving and were twice as likely to own two or more businesses.

“We found that dyslexics who succeed had overcome an awful lot in their lives by developing compensatory skills,” Professor Logan said in an interview. “If you tell your friends and acquaintances that you plan to start a business, you’ll hear over and over, ‘It won’t work. It can’t be done.’ But dyslexics are extraordinarily creative about maneuvering their way around problems.”

This reminds me of Dr. Robert Sapolsky's lecture on schizophrenia, schizotypalism, and obsessive-compulsive disorder where he suggested that people with such "abnormalities" were often able to find a place in a part of society where activities or traits associated with their "disorder" became assets. Speaking from my experience in the Navy, I could see hints at several personality subgroups in extremely high proportions who were either drawn to or retained by aspects of military service.

Perhaps in addition to seeking ways to "normalize" people clinically, we could also consider exploring activities or career paths that are not only forgiving, but highly compatible with a person's particular situation - a sociological solution to a clinical problem.

spray on condoms

Do you ever find yourself watching a television show, or movie, and having to hit pause to Google something you saw, because you just can't quite believe it? In this particular instance, I'm catching up on episodes of CSI: NY, and in the first episode of season four, they begin talking about (and demonstrating) spray on condoms.

"No way!" I thought, sure that this was something I could laugh off as improbable. Liquid latex in a spray can, spray application, 5 second drying time? Pause, Firefox, Google. See! Complete fict- what? Real? Oh. ...oh?

It would seem I slept through this particular bit of 2006 science innovation.

In reality, it's not necessarily what CSI: NY showed; it's more of a slide on device that coats the penis evenly with spray nozzles (most news coverage refers to it as "car wash like", a description I'm just going to leave alone) that a latex condom version of hairspray, and marketing is targeted towards a custom fit that will help prevent slippage and breaking.

You can watch a video clip showing the prototype, how the latex dries, and a short interview at this link, but please be aware that the link is not necessarily safe for work, and contains references to other videos and stories of sexual activity that certainly runs the risk of offending.

Of course, assuming this makes it to market (some time in 2008, according to the manufacturing company), you've got to wonder if anyone would really use it. And is it actually a better "fit"? Is the lack of reservoir tip going to create problems? How is it different from liquid latex? What safety mechanisms are built in to ensure that it's an even coat, and not patchy, thin, or missing a spot here and there? Is it cost effective?

I can certainly see having a can of aerosolized liquid latex being fun - I'm the type of person who would promptly run around and try coating everything I could with it, just to see what would happen (especially if it could at all be used in practical jokes, like covering someone's sandwich unnoticed), but I'm having a hard time seeing its actual benefit for protection during sexual activity. It seems like it would be a type of bragging ("oh, I can't wear regular condom sizes...") or a gadget-y purpose of (in)conspicuous consumption.

Thoughts?
-Kelly

Sunday, December 09, 2007

You Know You’re a Bioethicist When....

Along the lines of Jeff Foxworthy, Chicago bioethicist Timothy Murphy gave me permission to reprint this funny take on our profession :

You Know You’re a Bioethicist when:

*As you exercise on the treadmill, you wonder about the ethical, legal, and social effects of prolonging your own life.

*You meet an acquaintance in the supermarket. She asks after your mother who is in the hospital. You phrase your answer so as not to violate HIPAA standards.

*At a university banquet in your honor, you ask if the chicken has been genetically modified or been given genetically modified feed.

*The waiter at your local restaurant describes the fish of the day but forgets to mention that the recipe contains chervil. You decry the restaurant’s failure of informed consent.

*Your teenage daughter wants angel wing tattoos on her shoulder blades. Your teenage son wants scarified rings on his back. You suggest that they consider whether rule-utilitarianism, act utilitarianism, or preference utilitarianism will help them make better decisions about body modification.

*You see a pregnant neighbor and ask whether her child will be a boy, a girl, or a clone.

*A reporter calls to ask you about a breaking case you know nothing about, but you nevertheless express an opinion.

*Your spouse asks why you were later coming home last night than anticipated. You advise that you’ll have to get an ethics consultation before making any further statements.

*When arrested for driving under the influence, you breathe a sigh of relief that federal regulations prohibit most experimentation on prisoners.

*Someone at the White House asks you to serve on the President’s Council on Bioethics. You protest that you have no qualifications as a bioethicist. The President appoints you anyway.


Timothy F. Murphy
Chicago, November 2007

Not Just a Price Increase: The Human Cost of Contraceptive Prices

After more than a decade of decreasing birth rates among teenagers, the birth rate among teenagers 15 to 19 in the United States rose for the first time since 1991, according to a recent report by the Centers for Disease Control. Births among teenagers tend to lead to poorer health outcomes for both the young mothers and their babies. Not surprisingly, the report further inflamed the already heated debate surrounding “abstinence only” versus “comprehensive” sex education and ignored crucial access issues. Sexually active women, especially young women, are at increasing risk for unintended pregnancy and unmarried pregnancy due to constricted access to effective contraception on a number of fronts. First, the increase in the number of states limiting teens’ access to confidential reproductive health services, legislating parental notification laws not only for abortion but also for contraception despite demonstrated reductions in teen pregnancy rates. Second, women’s and girls’ reproductive health is endangered by pharmacists’ refusals to fill legal prescriptions for emergency contraception and oral contraception, their refusals increasingly protected by so-called “conscience” legislation that sacrifices women’s and girls’ health to ideology. No lobby no presence. Third, the cost of contraception has increased beyond the means of college students. In July the Centers for Medicare and Medicaid issued regulations that remove the incentives for drug companies to provide deeply discounted prices to college health clinics; a one-month supply of oral contraceptives, formerly $3-$5 at college health clinics, now costs between $40 and $50 for name brands and $15 to $20 for generics. The price increase was widely expected to cause students to switch to less reliable forms of birth control (oral contraceptives are used by 39% of women in college according to the American College Health Association) or to cease using birth control due to lack knowledge about alternatives. Some college health clinics have tried to subsidize a portion of the price increases; others have ceased to offer oral contraceptives altogether.

We’ve lost sight of why we are having the sex education debate in the first place: because of its serious implications for women’s and girls’ health and well being. The ideal of access is not exhausted by having the best available information; we also need to assure the material conditions of making that information effective.
RNF

Friday, December 07, 2007

Dame Warnock weighs in again

As some of you may know, the 2007 Amendments to the highly successful HFEA (Human Fertilisation and Embryology Act) of 1990 are now before Parliament for approval. The recent announcement that pluripotent stem cells could be derived from human skin cells (thus obviating the need for embryonic stem cell research) injected some side issues into the House of Lords Debate on the passage of the 2007 Amendments. On November 21, 2007, more than one member of the House of Lords voiced concerns that the 'moral status' of embryos needed to be revisited in light of the new research by Yamanaka and Thomson. See, http://www.theyworkforyou.com/lords/?id=2007-11-19a.704.4 19.

Dame Warnock, chair of the 1984 Warnock Committee of Enquiry into Human Fertilisation and Embryology which spearheaded the 1990 HFEA - perhaps fearing the injection of old arguments into the debate on the 2007 amendments - wrote a powerful essay for the November 29 issue of Nature reminding us that "there was little possibility of moral consensus" about research using live embryos when her committee recommended the 14 day rule to criminalize keeping an embryo alive in the laboratory more than 14 days after fertilization. [During her Committee's deliberations, she noted that] "the Church claimed a right to regulate science in this area, because of its superior knowledge of morality. In sharp contrast, the committee's entitlement to issue moral advice to ministers derived from its having been set up to do so and from its having a wide and non-partisan membership."

"The moral decisions that such committees have to make are essentially matters of public not private morality. We had to consider our own moral or religious scruples alongside what the consequences might be of the decisions for society as a whole. This was the reason we could not allow ourselves to be swayed by arguments derived from a particular religious dogma." "The legislation [we crafted] would govern everyone - believers and atheists - and had to take into account wider considerations such as the relief of suffering ... [Remember] that it is permissive. No one would be compelled to seek a form of infertility treatment or engage in a form of research..."

"It is essential that ignorance and prejudice should not be allowed to dictate the outcome. Everyone should be educated so as to have a broad understanding of science, and an appreciation of its potential for good. Without this, we cannot responsibly erect barriers to scientific advance." "This must be done by weighing up possible goods against possible harms. These harms do not include only the offending of religious sensibilities of a particular group."

The Singularity and Machines of Loving Grace

For those of you who are interested in the Singularity (the technological creation of smarter-than-human intelligence) here is a very interesting NPR podcast about AI (Artificial Intelligence) and a portion of an unreservedly optimistic poem by Richard Brautigan quoted in the podcast:

I like to think
(it has to be!)
of a cybernetic ecology
where we are free of our labors
and joined back to nature,
returned to our mammal
brothers and sisters,
and all watched over
by machines of loving grace.

Food for thought, indeed.

YouTube, Public Health, and anti-vaccination campaigners

At it's best YouTube, is a wonderful resource for amusement, education, disseminating information. At its worst, it is like a virus, providing information that is downright false, misleading and just plain bad -- makes me wish there was some form of trash collection on the web. The latest example of the latter are "documentary-type videos capturing the views of parents of autistic children who blame particular vaccines or thimerosal, a mercury-based preservative formerly used in vaccine manufacture, for the autism."

That's one way to undermine evidence-based medicine.

An article written by Helen Branswell, a medical reporter for The Canadian Press, chides public health researchers for not being tech-savvy enough and suggests that they need to get up to speed and try some new strategies, like YouTube for getting their message.

Sounds like a fun grant project to me -- anybody game?

Thursday, December 06, 2007

Bioethics & Television - Private Practice


It's too bad there's not a way to easily track the increase in call volume at fertility clinics. I'd give a lot to see what the call activity looked like this morning, after folks saw last night's episode ("In Which Dell Finds His Fight") of ABC's spin-off of Grey's Anatomy, Private Practice.

One of the two medical story lines followed in this episode centered on a couple who wanted to conceive, but the husband was diagnosed with azoospermia. The couple rapidly - as in, immediately after receiving the diagnosis - rule out adoption and decide that, since the wife is currently ovulating, they will try for sperm donation immediately.

Let's pause for a moment to consider the likelihood of a private practice based ob/gyn/fertility specialist and fetal surgeon/genetics specialist (we could really stop that sentence right there, but...) going from delivering a diagnosis of infertility to, within minutes, agreeing to allow the couple to select a sperm donor for insemination that day. I admit, this isn't my area of specialty, but I would think that this might be a process that takes time. Certainly more than the span of a few minutes.

However, that in and of itself, while rapidly paced and smoothed over for dramatic license, wasn't terribly egregious. It's the next part, where they opted not for sperm donation, but advanced sperm removal and IVF, that took the show beyond dramatic license and into the realm of "creating headaches for fertility clinics nationwide."

The two doctors explain to the couple that they can do a procedure called microsurgical retrieval of epididymal sperm, or MESA, and then extract the currently ovulating ovum from the wife, and use intracytoplasmic sperm injection (ICSI) to create a viable fetus, which was then immediately placed back into the uterus. The picture above is from this scene; you'll see that the patients were there and talking to the doctors as they performed this several stage complicated procedure all by themselves.

One of the things being talked about is just how real all this medicine was, and from what I saw and know (please correct what I get wrong), the procedures are all actually sound. It's the speed, the setting, and the overall depiction of the entire process that I find problematic. It's one thing to accelerate, for dramatic license, multiple office visits to discuss sperm donation and the details that would make, frankly, for boring television. No one wants to watch people sitting around talking, and it seems that the general knowledge level is such that no one expects to walk in to a fertility specialist office for a first visit, and walk out a hour later with sperm floating in their uterus.

MESA and ICSI are much more obscure, new, and not known procedures. By depicting them as joint events that can be simultaneously with single egg extraction during ovulation, and as something that takes no longer than an office visit instead of a several day if not weeklong or so process, gives an awful lot of false information that specialists then have to work at undoing. It's no longer a matter of educating a patient on a procedure, it's about undoing the subtle information bias that they might not even realize they hold.

Is it irresponsible for a show to compress and simplify a complicated procedure or concept so that it fits into the time allowed for the story? Maybe not, we expect dramatic license when we watch fictional television. The problem is just the degree of license - when you're going out of your way to establish authenticity with realistic imagery and dialogue, and strive for medical accuracy, it seems that putting a limit on just how far you stretch reality has to come in to play, as well.
-Kelly

Everyone, Do the Protein Synthesis Dance!

Laurie passed this gem of a 1970s science explanation video on to me, and really, the only thing I can say in response is, "and people wonder why my generation is so strange - look who was raising us!"



-Kelly
[cross-posted to the AJOBlog]

Wednesday, December 05, 2007

Facebook Saving Face?

Social networking site apologizes to users over flap from new controversial ad feature.
Angry users complained of privacy and truth in advertising violations. To see the whole scoop, click here.

In Sickness, and in Health...Sanctioned Cheating?

When does it become "acceptable" to look the other way or turn the other cheek when a spouse looks outside the marriage for companionship? Perhaps when the spouse faces his or her "darkest night"...

Ethical considerations can become complex when dealing with patients in long-term care situations, and not all spouses would be as loving--or understanding.

Love In the Time of Dementia.



Is Evolutionary Theology the 'middle path'?

Wired's Brandon Keim is writing a few stories about the intelligent design vs evolutionary theory debate and how latest showdown on this will take place in Florida, where opposition is mounting to state -mandated emphasis on the importance of evolution to science education:
" Jesus, meet Darwin...In the aftermath of a Texas education official's dismissal for promoting evolution, I spoke yesterday to Michael Dowd, a leading proponent of evolutionary theology...'Evolutionary theology offers a third way. Rightly understood, evolution is as sacred and meaningful as any of the creation myths,' said Dowd, who quoted biology titan E.O. Wilson, sometimes called Darwin's heir: 'The evolutionary epic is probably the best myth we'll ever have.'"

I love what E. O. Wilson has to say about this in his TED video:



It gives me hope that we can transcend the petty 'culture wars' and find a new way to respect all our biosphere and all living beings.

Kudos to the FABsters!

In response to an invitation from the World Medical Association, a Committee of the International Network on Feminist Approaches to Bioethics, worked over the summer to develop a document aimed at revising the Declaration of Helsinki.

The committee
currently is working with FAB Board members to develop a second submission, due in February. In order to keep everyone informed about their work and its impact thus far (notable, I think!), they have posted key documents on the FAB website: the standing version of the Declaration of Helsinki, the first submission to the WMA (forthcoming in the first issue of IJFAB), and finally, a draft of the revised Declaration. This is a great opportunity for this organization and we are sure they will make an important contribution. A Hearty Congratulations!

Tuesday, December 04, 2007

It's Cool to Give Smart Gifts

Over the summer, we talked a bit about it being cool to be smart, and with Chanukah starting today, and other holiday festivities rapidly approaching, what better time is there than to give the girls* in your life gifts to encourage interest in science, maths, medicine and more? My niece isn't quite old enough for any of this yet, but that doesn't stop me from looking (or, truth be told, wanting to play with the stuff myself - most of these would make great gifts for curious adults, too).

The CSI franchise appears to have a virtual empire of fun lab-related sets, from the CSI Fieldkit, which "comes with a fold-open box containing fingerprinting brushes and colored powder, crime tape, gloves, glasses, crimescope, mini microscope, tweezers, evidence containers, data journal, binoculars, spray bottle, camera, and more" (although apparently not luminol, alas), to the incredibly awesome looking CS Facial Reconstruction Kit, pictured to the left. And of course, no crime lab would be complete without a DNA Lab. "The kit offers instructions for conducting 10 experiments and provides little scientists with a working centrifuge, an electrophoresis chamber, and a three-speed motorized lab unit to carry out the work."

If the creative mind you're thinking about tends more towards Harry Potter than crime scenes, you're covered there, too. Again, there are quite a few options, but this one stood out for me: the Spells and Potions Science, Chemistry, Physics and Hobby Crafts set. Why not? If we can teach philosophy using pop culture, why can't we teach physics with Harry Potter? I think it's a brilliant idea.

Of course, the other great thing about this is the potential for DIY Biotech - as the processes and chemicals become cheaper and more foolproof, not only do non-professionals and kids have a chance to play and learn, but people who want to experiment and step outside the norm can do things like make art, grow their own skin, or - really, I think the limits are simply your own mind.

I find this incredibly exciting - and really wish I was 10 again!
-Kelly

*Boys, too. But I know I was always the envy of the other girls in my class, just because I had a father who did buy me science kits, let me build computers, have toy microscopes - does anyone else remember those? - and other things that are "typically" considered boy gifts.

Gendered Autonomy: No Physician-Aid-in-Dying for Women

The campaign in Washington State for a law allowing voluntary physician-aid-in-dying (PAID) is the subject of a piece in The New York Time Magazine this past Sunday. In the article, bioethicist Susan Wolf, who opposes PAID, is quoted extensively on “the woman question” – how to think about the implications of such a law for women. It troubles me that Wolf is often identified as feminist and progressive; her views on women and PAID strike me as grounded in paternalism and privilege. Instead of deploying very real feminist worries about sexism and gendered distinctions in quality-of-life assessments to empower women, she provides the justification for the control of our choices in dying by denying that “autonomy” can be properly attributed to anyone other than “a person of means untroubled by oppression.” Clearly, effective moral agency is a function of privileging or disadvantaging social identities as well as economic and caregiving resources. Rather than making sexism an excuse to deny women choices in dying, feminists should devote themselves to securing the conditions for women’s effective moral agency in this and other matters of choice in medical decision-making.
RNF

A New Twist on Kenya's Sex Trade

In a new twist on the sex trade in Kenya, middle-aged and older white women have begun flocking to Kenya in search of young male lovers, complete with tourism companies selling packages on the premise. According to Nottingtan University's Julia Davidson, part of the promise is a
return to a colonial past, where white women are served, serviced, and pampered by black minions.


On the one hand, and unlike the prolific and illegal child sex trade that operates in Kenya, these women aren't doing anything illegal - the Kenyan young men are of consenting age. And, some argue, they're doing what older men in their own countries are free to do without stigma - take younger lovers, and use their finances as a means of securing those lovers. As one of the women interviewed for the Reuters article said,
It's a social arrangement. I buy him a nice shirt and we go out for dinner. For as long as he stays with me he doesn't pay for anything, and I get what I want -- a good time. How is that different from a man buying a young girl dinner?


On the other hand, in a country where nearly 7% of the population has AIDS, a situation where it's common for a 22 year old young man to have slept with over 100 white women, and where the "exotic" fantasy shuns condoms, it's simply not a safe arrangement. This isn't How Stella Got Her Groove Back, and while yes, you want to say "yay, it's empowering" for older women to acknowledge and act on their sexuality, encouraging a return to a sexualized, colonialist, Orientalist attitude can't be a good thing - health, or otherwise.
-Kelly

Doctors don't like to say "oops"

A recent survey found that nearly half of physicians surveyed admitted to not revealing a medical error they were aware of.

They found that 46 percent of physicians surveyed admitted they knew of a serious medical error that had been made but did not tell authorities about it.

"There is a measurable disconnect between what physicians say they think is the right thing to do and what they actually do," said Eric Campbell of Massachusetts General Hospital and Harvard Medical School in Boston, who led the survey.

...Up to 96 percent of those surveyed said they should report all instances of significant incompetence or medical errors to the hospital clinic or to authorities. The exception was among cardiologists and surgeons, with just about 45 percent agreeing.


There are many potential reasons for these findings - increased vulnerability to malpractice lawsuits, the need to re-establish authority as a medical professional, lack of adequate time and communications with patients - but the impacts are far-reaching. Patients are losing their trust in the medical profession, and this distrust leads them to either not see the doctor for preventative care or early interventions, or to turn to "alternative therapies" that are at best ineffective and at worst harmful. There probably is no correct answer, but open discussion needs to continue on this issue to stem the hemmorhage of trust.

Monday, December 03, 2007

More on the Ballot Initiative to give Personhood to Embryos

Judith Graham and Judy Peres of the The Chicago Tribune have done a follow-up article on ballot initiative we had blogged about before -- the proposed referendum to grant the legal status of personhood to embryos from the moment of fertilization. The strategy of the groups proposing the ballot and the response from all different viewpoint is revealed, including the thoughts of some ethicists -- a major concern being that "many people won't understand the potentially profound consequences." Check out the full article here.

A Sneak Peak Inside a Stem Cell Lab

On several occasions, we've blogged about how stem cell research is not an 'either-or' proposition. Today, Kathryn Hinsch pens an article at Science Progress giving us a peek inside a privately funded stem cell lab and at the motivations of stem cell researchers. One of the researchers talks poignantly about the "work became an existential commitment, a chance to do battle with public health challenges.”

The crux of the article is that "To win the battle against disease, dysfunction, and injury, stem cell research must continue on all fronts: embryonic, IPS [induced pluripotent stem cells], placental, and adult." To get a bigger view inside the lab and read the rest of the article, click here.

Sunday, December 02, 2007

International Human Rights Day and the Terasem Colloquium

International Human Rights Day

Recognized by Terasem Movement, Inc.’s Third Annual Colloquium on the Law of Transbeman Persons

Public Invited Via Conference Call on December 10, 2007


Monday, December 3, 2007, SPACE COAST, FL -- Terasem Movement, Incorporated announced today that its Third Annual Colloquium on the Law of Transbeman Persons, in celebration of International Human Rights Day, will be held December 10, 2007 along Florida’s Space Coast. A transbeman is a bio-electronic human transitioning between flesh and computerized substrate.

The colloquia are open to the public via real-time conference call and blogging and will be archived online for free public access. The public is invited to call a toll-free conference-call dial-in line from 9:00 a.m. - 5:00 p.m. EST. Callers within the continental US and Canada may dial 1-877-879-6207; other countries: (00+1) 1-719-325-4775 or access the blog at: http://acceleratingfuture.com/michael/blog/.


Colloquium presentations are designed for a 15-20 minute delivery, followed by a 20-minute discussion period amongst attendees. Additional questions from the worldwide audience will also be invited. Presentations will also be available on the Colloquium’s website at http://www.terasemcentral.org/TL/2007ColloquiumProgram.html.

Some of this year’s speakers include Dr. Marvin Minsky, MIT, Author: The Emotion Machine; David R. Koepsell, J.D., Ph.D., Yale Interdisciplinary Center for Bioethics; and William Sims Bainbridge, Ph.D., National Science Foundation and others.

Real-time blogging provided by Michael Anissimov, Lifeboat Foundation’s North American Fundraising Director. www.lifeboat.com.

For additional information, please contact: Loraine J. Rhodes at 321-676-3690, ext 100, or lori@terasemcentral.org.

About the Terasem Movement

The Terasem Movement, Inc., is a 501(c)(3) not-for-profit charity endowed for the purpose of educating the public on the practicality and necessity of greatly extending human life, consistent with diversity and unity, via geoethical nanotechnology and personal cyberconsciousness. The Terasem Movement accomplishes its objectives by convening publicly accessible symposia, publishing explanatory analyses, conducting demonstration projects, issuing grants and encouraging public belief in a positive, technologically-based future.

For more information, please visit www.terasemcentral.org or http://terasemfoundation.org.

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World AIDS Day

Along the lines of the post below, the following youtube video illustrates the vast number of individuals affected by lighting a candle for each person living with HIV/AIDS.


HIV/AIDS In Light of Numbers

Yesterday, December 1st, was World AIDS Day, and in conjunction with that two new studies have been released. The first is a worldwide "oops", as the United Nations has acknowledged that it has overestimated the cases of HIV/AIDS by approximately 6 million people. (That's more than the population of New Zealand, and only slightly less than the population of Switzerland.) New infection rates are also down, to 2.5 million a year, and India's infection rate has been estimated at half its previous numbers.

But while the new numbers suggest both that the UN needs to revise how it's running its numbers, and that prevention strategies have been effective, the numbers for the United States are more grim.

The CDC has moved from an informal tracking of HIV/AIDS infections to a more accurate assessment, and in the process, discovered that infection rates in the States is much higher than previously thought. How much higher is up for debate, since the CDC has not yet released the figures from their new study; the official word is patience until their papers have been peer reviewed.

According to the NYTimes, the new assessment involves
two different blood tests of H.I.V. antibodies — the first indication of an infection. One test is highly sensitive and is able to spot an infection even in its earliest months. The other test is cruder, and patients must nurse an infection for many months before it can be identified with this test.

When a blood sample receives a positive result on the first test and a negative result on the second, officials have decided that this person was probably infected recently. By adding up these mixed results and projecting them across the country, the agency is able to come up with an estimate for new infections.
And while the numbers haven't been released, everyone seems to agree on one thing - the numbers will go up. Of course, the question then becomes why have the numbers increased - are there actually more cases of infection, or are the more sensitive tests combined with reporting both HIV and AIDS cases (when previously not all states reported positive HIV tests, only active AIDS cases) showing a more accurate picture?

Either way, one thing is certain - prevention efforts are not proving as effective as they could be in the United States. Unfortunately for us, HIV/AIDS prevention is a highly political issue, not just in finances, but in what's taught. We know that the best prevention education focuses on a combination of increasing condom use, decreasing sexual partners, and general education both about sex and infectious disease. In light of the numbers, showing decrease due to education, or increase because of a reinterpretation of numbers, we owe it to ourselves, to everyone, to accurately educate and contribute to preventing the spread of this infectious disease.

Just because HIV can be treated as a chronic condition - wonderful news for those already infected - does not mean we should decrease our efforts at prevention.

Saturday, December 01, 2007

The Perfect Spouse

We had an earlier post about Sex and Marriage with Robots, the AJOB blog has followed up on the theme and Hollywood dreamed this all up in The Stepford Wives long before scholars were writing about the possibility. But for the first time, that I can think of, that someone (namely Wired's Regina Lynn) has named a top 10 reasons list to marry a robot -- here are just a few of the reasons she gave:

- Artificial intelligence is still intelligence.

- Robots have off switches.

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A robot is forever -- at least until the warranty runs out.

I could think of few other reasons -- like, no complaints about who does the housework -- after all, doesn't the perfect robot spouse dust, vacuum, and do laundry while you're off at work all day, and then greets you at home with a healthy, gourmet dinner? Or balances your checking account without criticizing your spending habits? Or is never too tired at night to tango? The list could be quite lengthy...

Good for a chuckle -- you can access the rest of Regina's article here.

Report Card on Women’s Health – Not “Making the Grade”

One of the most valuable resources for Women’s Bioethics is “Making the Grade on Women’s Health,” a national and state by state report on the current state of women’s health and health policies. The recently published 2007 edition, the fourth in the series, is a project of the National Women’s Law Center and the Oregon Health and Science University. My posts this week will take up some of the Report specifics, but today I want to emphasize a larger issue.

Biomedical research into biological explanations for health disparities is only part of the puzzle. Less attention and almost no federal funding is devoted to understanding how inequities in health outcomes for women are linked to the organization and distribution of health care. As Virginia Woolf suggested in Three Guineas, women must depend on non-governmental and private funding to move these and other “orphan” projects that empower women forward. Kudos to the NWLC and others who make it possible to demonstrate that claims about women’s inequalities are neither whining nor paranoid, but are rather claims of justice.

RNF