June 2009
Caplan: Think Big on Health Care
Arthur Caplan reminded us last week not to get bogged down in the details and to "think big" on health care. To read more about what he said, click here or read the full text of his MSNBC column below.
Summer Johnson, PhD
Details, Schmetails: Think Big on Health Care
As the debate over health care reform heats up this summer, the new battle cry of those who oppose change is that overhauling the nation's health care can't work because reform is "all in the details." And the details, the critics say, don't add up.
Republican critics in the House and Senate along with the American Medical Association, the United States Chamber of Commerce and the pundits of right-wing talk radio, TV and blogs are warning daily that without the "details," health reform cannot possibly proceed.
They demand mind-numbing minutiae about such things as comparative effectiveness research and information technology programming.
A larger load of baloney masquerading as an argument could not be imagined. The success of health care reform is not in the details.
Think I'm wrong? Details killed the early '90s Clinton effort at health reform. Hillary's team had stacks and stacks of details. In fact, they produced a magnificently detailed 1,800 page plan that became the unreadable, unsellable playbook of a movement that collapsed under the weight of its own detailed dilatory prose. None of this was of any help whatsoever to the nearly 50 million Americans without health coverage.
No one except for the critics looking for some way to derail health reform gives a hoot about the details. OK, a few others care.
Details fascinate the wonks, nerds and pointy heads that our very bright president has, thankfully, surrounded himself with to help figure out how to implement reform. And when challenged by critics every impulse of the wonk posse is to get the president to pile on more details.
Details are what the media long to report and you lust not to read. Details are the droppings of inside-the-Beltway gossip intended to impress your host or your date. Details, however, are not the key to health reform.
No nation on earth has ever reformed its health care system by asking the public to wallow around in the details. Canada, Britain, France, Germany, Switzerland, Australia, New Zealand and all of the other nations boasting universal health care coverage did not assemble their finest numbers crunchers and pencil pushers and send them into the front lines of the battle to sell reform.
Do the right thing
What matters in health reform? How about doing what's right?
Specifically, what is going to determine whether health reform can be pushed through by the well-intended Obama administration is the answer to one single, fairly simple ethics question: Is health care a right that every American should have? That is what Obama needs to continue to stress. If he can sell the American people on the idea that they have a right to health care, then the details will all be worked out in time. If health care is not viewed as a right then the details are the boggy swamp where reform goes to die.
Not so long ago I gave a speech to a group of about 75 influential hospital executives. Before starting my talk I asked how many of them thought health care was a right. About seven or eight did. I knew there and then that the fight to reform our broken, costly health care mess of a system would be all uphill.
In some societies, health care is seen as a right because it has been earned. The British National Health Service was created in response to the British public having endured the Nazi blitz for many awful years.
Some societies see health care as a right because a healthy work force means a stronger economy. That was the basis for health care reform in Germany and Singapore. And, in some nations, health care is seen as a right because of the ethical belief that a community should look after its own. Switzerland, Canada, Australia, France and New Zealand have grounded their right to health care in this idea of social solidarity.
Equal opportunity
The American public isn't likely to bite on any of these propositions. But there is another argument that speaks directly to a notion we Americans embrace -- equal opportunity.
We believe all Americans have a right to a basic education for this very reason. And isn't your health as essential to thriving in the free market this country so loves as your schooling?
Imagine if our nation had set out to establish public education with this same detail-bogged mindset instead of a commitment to attempting to level the playing field for all children.
Well, that playing field turns into a steep cliff when a child's medical needs aren't guaranteed.
Forget the details, Mr. President. Do not get bogged down talking about them. Leave them to Congressional staffers, the Office of Management and Budget, academics and lobbyists. In other words, the wonks, nerds and pointy heads.
You need to keep your eye on the prize -- creating a health care system that fulfills every American's right to decent care. If you constantly remind the public that health care is a right and the most basic underpinning of equal opportunity, Americans will demand that the details simply get worked out.
Follow-up on The Wild West of Nanotechnology
Today, The Scientist has revealed more about the scandal involving nanoscientist Chiming Wei which was first written about here on bioethics.net.
This scandal has brought into question what counts as "expertise" in nanomedicine, The Scientist claims, and one source was quoted as saying that it may have even damaged the reputation of the field.
My take: generally scientists trust that their credentials are accurate--the letters after their name, their CVs, their stated goals and activities. But some take advantage of that trust and in a field absent sufficient regulation and oversight, that may be even easier to do. The rules should not, however, be based on the Dr. Wei's of the world, but we should remember that absent sufficient regulation and oversight research and academic ethics violations can and will occur.
Summer Johnson, PhD
My Mommy Is My Daddy Is My Mommy
Stem cell research has the potential to change the standard gendered parental relationships by making it possible for women to produce sperm and eggs from stem cells say British researchers in the Globe and Mail.
Better yet, a new Canadian "mockumentary" called The Baby Formula brings to the public's attention the fact that some day in the future human reproduction may be markedly different than it is today.
So what's the big deal? So we will be able to produce sperm from women's bone marrow or other stem cell sources and reproduction will no longer require men. Lesbian couples will no longer rely upon sperm donors to have children who at best could only be 50 percent biologically theirs.
Really, the social hurdles shouldn't be the ones that are hardest to overcome, but rather the research ethics challenges. To know whether or not these new "sperm" are viable, embryos made with female only DNA will have to be created and implanted into women and brought to term. There are serious risks with performing this research, and inherently, the women signing up to do this research will be those most desperate to have a child. Thus, the most critical concerns will be: will these women care about informed consent or just having a child?
The ethics concerns here are numerous, but the social ones should not be. Giving same-sex couples a chance to have biologically related children is an important opportunity that ought not be missed--overcoming the ethics concerns is really the only issue that SHOULD have been addressed in such a movie, even a "mockumentary."
Summer Johnson, PhD
Be Careful What You Wish For
In collaboration with Nanotech-Now.com and Lifeboat Foundation, Ti
hamer Toth-Fejel comments as this month's guest columnist about the prospect of a much less ominous future for nanotechnology that most. Yet, as the title suggests, it still presents some issues for society that heretofore we may not have tackled or even thought to consider (or worry about).
People have been worried about nanotechnology for quite some time now; nano-asbestos, advanced nano-enabled weapons, and self-replicating "gray goo" nanobots that accidentally go out of control. But what if everything goes right? What if nanotubes and nanoparticles are functionalized to stay out of the ecosystem? What if there are no major wars? What if nanoreplicators are never built, or if they are, they use modern error correction software to never mutate? What happens if nanotechnology fulfills humanity's desires perfectly?
In the next decade or so, a new type of desktop appliance will be developed--a nanofactory that consists of very many productive nanosystems--atomically precise nanoscale machines that work together to build bulk amounts of atomically precise products.
The Foresight Technology Roadmap for Productive Nanosystems has identified a number of different approaches for building these atomically precise systems of machines that can produce other nanosystems. These approaches include Paul Rothemund's DNA Origami, Christopher Schafmeister's Bis-proteins, Joe Lynden's Patterned Atomic Layer Epitaxy, and Robert Freitas and Ralph Merkle's Diamondoid Mechanosynthesis . Each of these approaches has the potential of building the numerous nanoscale electronic, mechanical, and structural components that comprise productive nanosystems.
The ultimate result will be a nanofactory that can build virtually anything--limited only by the laws of physics, the properties of the input feedstock, and the software that controls the device.
The concern is that this relatively primitive application--if successfully deployed as expected--will pose significant challenges, even if nobody accidentally makes a mistake or puts it to evil ends. Consider the simple, safe, and optimistic possibilities made possible by a nanofactory that can build a wide variety of atomically precise, large-scale products out of a few different input elements (say carbon, hydrogen, oxygen, iron, silicon, germanium, boron, phosphorus, and titanium) . The factory itself would not not nano-sized; it would be an appliance that is approximately the same size as a desktop printer. However, its multi-material 3D output products would be atomically precise at the nanoscale.
The first and most valuable product of a nanofactory will be another nanofactory. The second most valuable product will be a system that refills the nanofactory's "inkjet cartridge" using inexpensive feedstock, and the third will be a machine that turns sand into photovoltaic solar cells (with which to power the nanofactory). It is not clear what would one would print next. Programmable material for a holodeck? Wearable supercomputers? A few pounds of medical nanobots?
In any case, a few months to a few years after the first commercial release of a nanofactory, almost everyone will have one. It is not clear what the price might be--perhaps $1000. The price could not drop to zero, though it might approach the cost of dirt, sunshine, and the time required to print a nanofactory.
Diamond and it's carbon-based relatives are an engineer's best friend; being 50 times stronger than steel, only their atomic structure differentiates it from coal. Once people have a printer that can inexpensively make arbitrary, atomically perfect diamondoid nanostructures out of carbon, they are going to make everything out of it--from wearable supercomputers and skyscrapers that reach Low Earth Orbit to medical nanobots and flying cars--anything that doesn't violate the laws of physics and has a CAD file description available on the web. Therefore, any cheap sources of carbon will be snatched up quickly.
Because human desire is essentially infinite, the demand for carbon will reach very high levels fairly quickly.
Air is free, and so is the carbon dioxide in it.
If taking carbon dioxide out of the air became economically favorable (and with inexpensive solar power it probably will be), then the result will be a 'tragedy of the commons'. This would solve CO2-caused global warming with a vengeance, but would result in global freezing--and worse. If enough carbon dioxide in the air was removed, plant life would start to die.
Futurist Keith Henson has predicted that to counteract this outcome, the Sierra Club will frantically strip-mine all the coal under Wyoming and burn it as dirty a manner possible to save the rain forests. If Henson is correct, then Congress might pass laws that make it illegal to take CO2 from the air. But how will the government enforce a ban against unauthorized CO2 extraction?
Nanotechnology, of course.
Unfortunately, a government with unfettered nanotechnology-enhanced enforcement powers would likely be a dictatorship that makes the totalitarian regime of Orwell's 1984 look like a kindergarten playground.
An alternative to a dictatorship would involve ownership of air. This sounds strange and preposterous until we remember that the American Indians thought that land ownership was strange and preposterous.
A more jarring alternative might involve the re-engineering of plants so that they can live without carbon dioxide, perhaps by using silica as a structure material (as diatoms do). Do we really trust ourselves to recreate Earth's biosphere in such a drastic manner? Some optimists will tell us not to worry about such drastic genetic modification on the ecosystem; we will back up the whole thing on the web somewhere, and use modern software revision-tracking software to keep it safe.
Admittedly, these scenarios seem rather far-fetched. However, as Foresight Institute co-founder Christine Peterson put it, "If you look out into the long-term future and what you see looks like science fiction, it might be wrong. But if it doesn't look like science fiction, it's definitely wrong" .
We are not yet at the level of technological maturity at which we can confidently assert that widescale nanofactory development and distribution is inevitable. Of the four main approaches to Productive Nanosystems, only the most rudimentary lab demos have proven the concepts. Therefore, the suggestion that nanofactories will alter the conditions of anthropogenic global warming may be met with skepticism -- as it should. However, in light of the exponential progress in nanotechnology in the past few years, it is likely that some version of the carbon dioxide tragedy of the commons will happen in some form or another. Researchers, policy makers, and the public at large must become aware of these possibilities, and thoughtfully analyze them. Otherwise disruptive events may cause panic, as most scenarios predict a quick transition from initial invention to wide distribution of these technologies.
Ultimately, this prediction means two things. First, that wasting precious time, money, and effort on stopping global warming will increase the risk of other, more serious catastrophes. Second, we will need to set aside any conservative values regarding the preservation of the Earth's ecosystem as it currently exists. Change will happen. The good news is that a Space Pier and other low-cost methods to orbit will be available for conservatives who are intent on preserving the status quo biosphere elsewhere in the solar system. Of course, these are the same people who are probably the most emotionally resistant to leaving, which might lead to conflicts.
Howard Bloom gently points out that "Nature is not a motherly protector". Putting it more bluntly and extending the anthropomorphism, Mother Nature is a brutal psychopath who uncaringly tortures and slaughters her children. She does not build nice little eco-friendly Gardens of Eden. In fact, there have been 148 major die-offs, and six much bigger mass extinctions (in which over 90% of species on this planet were wiped out--each and every time). Those die-offs resulted from natural physical disturbances in a universe that is fine-tuned to allow carbon-based life to emerge. It's a mixed message, but the message is simple: Adapt or die. Nanotechnology will not change that message. However, it will provide us with better biotech tools that will enable us to (for better or worse) manipulate our bodies and brains.
As the nanotechnology revolution begins, we will need to think hard about its secondary effects and ethical implications. The sheer magnitude of changes will cause us to consider carefully our ultimate role in the universe, our essential nature as human persons, the meaning of our lives, and what we really, really desire.
Tihamer Toth-Fejel, PhD
General Dynamics Advanced Information Systems
Michigan Research and Development Center
Your Out! Auf Wiedersehen to the Doctor's White Coat
They never were fashion-forward, but the AMA had a much better reason to vote out the traditional doctor's white coat this week. The long sleeves have been proven to spread infection when brushing across sick patients for hours at a time.
The key: getting hospitals and notoriously stubborn doctors stuck in their routines and the imagined power of the white coat to get over themselves and slough off the old rag in favor of other less infectious garb.
That was, in fact, the entire point. The resolution was not just to do away with the iconic coat, but also to get rid of "long sleeves and ties for medical staff coming into contact with patients", as the WSJ Health Blog said today. Germ-spreading doctor-wear be gone.
The likelihood of this is pretty slim, but doctors in Scotland have already taken the plunge, so why not here in the States? It does open up a whole new world for fashion designers to create good looking, non-infectious clothing for the hospital. I'm envisioning Project Runway: Hospital coming soon to television screens near you.
Summer Johnson, PhD
Stuart Laidlaw is Going to Get Me [a] Shot from Merck
I couldn't be more pleased that [insert gratuitous but sincere praise:] outstanding Toronto Star writer Stuart Laidlaw has been rigorously following the Merck/Elsevier scandal. It's practically flattering that he's listening to bioethics' and in particular bioethics' publishing voices, and he's quoted The American Journal of Bioethics Editor's Blog [that'd be the fancy-pants name for blog.bioethics.net] on his own Toronto Star Medical Ethics blog. However...the old adage that "the enemy of my enemy is my friend" may not apply to taking on the admittedly incredible ethical missteps by Merck ... and its publishing mules, comprising a whole fleet of bogus journals made to fool academics and clinicians.
You'd think that Merck would have learned from Vioxx and their New England Journal mistake (oops, forgot to send that data...) where publishing is concerned. You'd think ANY publishing company would learn that presenting the appearance of peer review for sale, then refusing to be transparent about just how much it COSTS to buy a peer reviewed journal. But you'd be wrong.
The thing is ... Stuart ... these guys are not, well, did you see the movie The Insider? [note to pharma lawyers and publishers of all kinds: I live on a small island in the Pacific...really...]
Summer Johnson, PhD
Cultural Sex Selection: No Harm, No Foul?
Emily Willingham asks an important question as to whether the apparent cultural preference toward having a male child in the family among Asian-Americans represents a harm--either to Asian-American girls, or simply to women generally. I'm inclined to think the latter. But we'll let you decide:
A New York Times story reports that data on birth rates among Asian Americans hint at a bias for boys. According to the report, some Asian-American families appear to be particularly prone to selection for a boy child if they had a girl the first time around. With each successive girl, the odds that the next child will be a boy increase. Of course, the odds should be 50:50 for each birth, but by the third child, if the first two were girls, the ratio of boys to girls among Asian Americans climbs to 1.51:1, in favor of boys. The article states that this outcome results from families having opted for sex selection, either through abortion or in vitro fertilization, to ensure that they'd have a boy.
For families that opt for those interventions, all I have to ask is, "What, exactly, is wrong with having girls?" The feminist in me cries out, "Girls are just as good as boys!" And we are. End of story.
A doctor quoted in the article recognizes the cultural associations of these choices among the Asian-American population, and one expert predicts that with assimilation, the ratio will subside to the near 1:1 that Nature, in her infinite wisdom, intended. China is already having to grapple with its 120 males for every 100 females as a result of such selection. But the doctor, Jeffrey Steinberg, who is the medical director of a fertility clinic that performs sex selection procedures, also is quoted in the NYT piece as saying, "Whether we agree with it, it's not harming anyone."
I beg to differ. As a former girl and current woman, I'd say that countenancing these choices with an excuse like that perpetuates biological sexism. It relegates girls to second-class citizens and second-class biological entities even before conception. It's one thing to fight for equality as a full-grown, existing woman. It's another thing to have to view the battle as beginning pre-conception or in utero against an elusive foe of culturalism or casual acceptance of sexism, especially when we must also struggle against the unsupported assumption that artificial sexual selection does no harm. Ask China if it does harm. Ask a girl if she finds these attitudes harmful. It does do harm, harm to what should be about half of the population, if Nature were allowed to have her way.
Botched Prenatal Test = Botched Knee Surgery? I Don't Think So.
But if you as Susan Wolf, professor at the University of Minnesota, she would tell you that suing for one screwed up procedure is no different than suing for another. Except for one small detail: when you screw up a prenatal test, the outcome can be that you have a child with anything from a mild to incredibly severe disability.
Then the question remains: what is a parent to do? Whom do they hold accountable for the medical care, the unanticipated struggles and tough choices that lie ahead in their own lives and the life of their child--and what, if in the case of one particular Oregonian couple, they wouldn't have had the child in the first place had the test not been botched?
Although such "wrongful life" cases are rare, they do happen--and they are very difficult, intellectually and emotionally to tackle. They are not as simple as equating an incorrectly performed genetic test with other kinds of medical tests because the outcome is a human life that cannot be taken back, ameliorated with secondary procedures (like with a bad knee surgery), or a "do-over" as with other kinds of tests. A child is born and someone--whether the parents or the state--must care for him or her, as in the case of the 2 year old daughter of Deborah and Ariel Levy, who was born with Down's Syndrome after a botched genetic test.
So, in our litigious society, these parents have chosen to do what seems probably like the only real option--to seek damages from medical center that performed the testing to the tune of $14 million dollars to "cover the costs of raising her and providing education, medical care, and speech and physical therapy for their daughter". The lawsuit seeks additional monies to cover her life-long care needs as well as for both parents' depression and emotional stress.
The parents, if they are awarded this money, hopefully will be able to provide the very best life possible to a child that they would have never had--had they been given the correct test result. Whether or not one agrees with that moral choice, it is their choice to make and they were denied it by a medical mistake.
At the very minimum, this is the least society can do to help these parents adjust to a life that they otherwise would not have chosen and to ensure that over the life course of their child she has the care she needs. Of course, the Levys will adjust and cope and like most parents who have children with disabilities, their daughter's life will offer joys and experiences that they could have never imagined.
But undoubtedly, they have been forced into a situation by a medical mistake that never should have happened that is life altering and that does in fact cost millions of dollars for medical care and therapy. Is their daughter's life a "wrongful life"? In the initial shock of her birth and the aftermath, it may feel like it to them and it may not have been what they would have chosen for their lives as parents. However, absent that choice and given that they have two older children to raise, they must do the best they can. Demanding reparation for a 99% accurate test doesn't seem all that unreasonable when the results of being wrong last a lifetime for parent and child.
Summer Johnson, PhD
BioEdge and Charo's "Conspiracy of Hype"
One can hardly be surprised to find that Michael Cook's BioEdge blog would jump at the chance to take Alta Charo's remarks about the "hyping" of stem cell research as an all-too-easy chance to suggest that embryonic stem cell research generally has been oversold. To make the implication that a "conspiracy of hype" has surrounded embryonic stem cell research from one of the strongest political and ethical proponents of embryonic stem cell research is something that advocates of adult stem cell research dream about. Too bad, they really didn't listen to what Charo said.
While Cook quotes Charo's comments made at the Milken Institute Global Conference in late April, taken on face value, her comments are really nothing more than an honest appraisal of a field of research mixed with politics that over the last 8 years that has done its best to survive in a world with limited public funding, fierce political in-fighting, and ambitious scientific researchers.
If one goes back to the original source from which the conference's proceedings were originally discussed and posted, the Faster Cures blog, a much more even-handed assessment of the entire conference is presented, as well as the context in which Charo made her comments.
There is nothing to suggest, as BioEdge would lead us to believe, that the take-home message from Charo's discussion was the "conspiratorial" nature of the state of stem cell research or even its media coverage, or its advocacy groups. Rather, awareness about these various factors at play in the on-going political, social, and scientific progress being made in stem cell research is essential.
Without such awareness, we would be duped into thinking that new, huge scientific advances were being made in stem cell research daily, that stem cell cures were around the corner, that we should all fly off to China to be cured of whatever ails us, etc...
Creating such awareness about what is real and what is not, in fact, one of the roles of a bioethicist. Charo was doing precisely that--not suggesting that embryonic research is propped up by a "conspiracy of hype." If anyone is being conspiratorial, it's those who oppose embryonic stem cell research and who are looking for any gap in consistency in argument or logic among their opponents and to use their words against them. In this case, those like Michael Cook have again failed to do so.
Summer Johnson, PhD
Who Cares About Preventive Care? Who Should?
The role and scope of preventive care in our healthcare system has been a perennial issue for decades. Emily Willingham raises the issue and its role in healthcare reform and are larger healthcare system in light of a recent encounter on Facebook and more:
I received a Facebook invitation today to join in signing a petition to require insurance coverage for genetic testing for breast cancer. According to the petition, insurance companies might cover such testing if three people in a family have had breast cancer, but if "only" one person has, then no dice. I did some quick Mendelian math and cannot understand how three vs. one in terms of heritability makes a difference in individual risk. If your mother carries the BRCA allele, whether your sister or your aunt does has no influence on whether or not you do. If you inherit BRCA1 or BRCA2, your lifetime risk is up to 80%.
The invitation was timely because I'd already been mulling the relevance of prevention in the context of national health care. It is an enormous logical disconnect not to provide coverage for all standard preventive care, including vaccines (we once had insurance that did not cover vaccines). We've got another irrational disconnect on our hands if companies refuse to cover tests for at-risk people and introduce an irrelevant "three-person" rule into the heritability calculus, one that is not even within the National Cancer Institute's guidelines for "significant family history" of breast cancer. Surely the costs of such preventive interventions in at-risk populations are less than the costs of treating related acute or chronic diseases, even if broader screening across a population regardless of risk is not. That math can be worked out. A breast cancer allele, on the other hand, cannot.
The breast cancer petition is just one example. In our discussion of national health care, there ought to be a strong emphasis on coverage for standard preventive care. We should also consider encouraging covered individuals to meet benchmarks for regular checkups and immunizations (with the usual exceptions). Expenditure of tax dollars on a person's health could at least warrant emphasis on prevention adherence in maintaining good health. The cost savings in the long run are measurable in terms of economics. In terms of lives, they have no price.
Open Access Publisher Under Scrutiny for Taking Sham Paper
First came The Australasian Journal of Bone and Joint Density, now comes The Open Information Science Journal. As The Scientist tells us today, it's not just the large academic publishers that are in hot water for publishing phony journals, but open source publications that are apparently attempting to publish fake papers.
This phony-baloney paper, generated by a computer program and published under pseudonyms, has shone a light on the open-access publishing industry which publishes papers for money and makes claims to peer-reviewing journal articles the same as other academic journals. This "little experiment" as these authors have called it--wanted to test whether or not the process behind the publication of such manuscripts was up-to-snuff. Clearly, at least in this case, it wasn't.
The authors did not actually have the paper published, however, fearing it would be unethical to pay the $800 to have a phony paper published in the journal knowing that it was indeed fake, even though it was cleared for publication after receiving no reviewer comments and very little communication with the journal at all.
The problems with such a flawed review process such that a journal, open access or not, could not tell the difference between a computer generated manuscript filled with nonsensical sentences and a real manuscript are serious. Whether they are isolated to open access publishers who take money to publish papers or not is an interesting question. As recent weeks have shown, traditional academic publishers face their own struggles with what is counts as a "peer-reviewed" publication.
In this case, however, the paper was simply entirely a sham. It was only because the authors pulled back and chose not to plunk down the $800 did this phony paper not appear in print.
One has to ask themselves: what else is out there lurking in the world of research and publication ethics that we have yet to uncover?
Summer Johnson, PhD
Metamorphosis: The Margaret Battin Story
It's the workaholics who are told that "your work is your life". It's many in academia who find that they are drawn to study the issues that afflict them or plague them or trouble them most about themselves or about the world. But in the case of Margaret "Peggy" Battin, a respected philosopher and bioethicist, it just so happened that the scholarship that she spent her life pursuing studying, end-of-life issues and ethics, has now come into play in her real life--as a result of a tragedy that has befallen her husband, who suffered a spinal cord injury that left him paralyzed from the neck down.
Now she must grapple, in real life, with the abstract questions, that her scholarship has for decades. Many of us who work in bioethics realize when they face the illness of a child or parent that the tough questions about end-of-life care are just as tough even for those of us who have the "training" and "expertise" that are supposed to equip us to handle precisely those situations. But few of us take the time to reflect on that experience or to share it with others. This is precisely what Peggy has done--and with grace and emotion that is incredible.
There are no words to describe Peggy's journey with her husband but her own. Her film, comprised of black and white photos of his journey through treatment and his on-going recovery from his spinal cord injury and her experience as caregiver, spouse and friend, tells of both his and her own metamorphosis as a result of this accident. The film, Metamorphosis, found here, is a must-see for anyone interested in end-of-life issues and will reconceptualize how one thinks about caring, caregivers, and one's own relationship to "knowing" an area of scholarship and living it.
We wish Peggy and her husband, Brooke Hopkins, the best on their road together. It was amazing to see the transformation and to see something so beautiful and moving arise out of tragedy.
Summer Johnson, PhD
Has Medical Bankruptcy Become Part of the American Way?
Following up on last week's post which talked about how even insured Americans are shelling out more and more dollars out of pocket to pay for their healthcare, guest blogger Emily Willingham, PhD tells us that research suggest that in addition to that frightening trend there is even more to fear when it comes to paying for healthcare access, even if you have health insurance.
A study from Harvard and Ohio universities of bankruptcies reports that in 2007, even before we hit an economic rock bottom, a family in the US filed for bankruptcy post illness every 90 seconds.
About 75% of them had insurance, according to the study. I don't know what the word "insurance" once meant, but today it means that you pay for something that provides nothing in the way of assurance that you won't go bankrupt over an illness.
More than 60% of US bankruptcies in 2007 were related to overwhelming costs of medical illness, the study results indicate. Likely, they had no idea at the time of the costs they were accruing. Even with insurance, the Byzantine rules for payments and writeoffs make the entire calculus a deep mystery.
It wasn't always like this. The Harvard/Ohio study reports that the percentage of bankruptcies attributable to medical issues has increased by 50% since 2001 (N.B.: a dissenter on the data here, plus interesting discussion in the comments). Obviously, things have gotten out of hand, and families in dire health straits are paying for it, sometimes twice for the "insurance" that provides no assurance, and then with everything they have.
What can I say about this that isn't obvious? Obviously, it's not right that people must add financial anxiety, stress, and loss to the native stress that accompanies illness. Obviously, it's not right that the insurance we pay for provides no assurance whatsoever that our out-of-pocket burden won't bloom into the five figures annually--I know ours does. Obviously, something that is right needs to be done. Ethics and economics require a national health care that serves as a safety net for everyone in times of exigent medical need. Receiving adequate medical care is not equivalent to overspending on a Lexus or foolishly taking out a mortgage you can't afford, and it shouldn't be treated as such.
Oprah may spiritualize the mind-body connection, but in a physiological sense, it is very real. The stress of anticipating a financial catastrophe shouldn't be added to a person's efforts to recover from illness--or to their decisions about whether or not to pursue adequate care.
Special Double Issue AJOB 9:6-7 Available Now on Bioethics.net
Facebook and other social networking sites. Direct-to-consumer genetic testing. A taxonomy for empirical bioethics.
The issues were so important, so numerous, and so overwhelming that it took a special DOUBLE issue of AJOB to cover them all. The response from the field, and from those outside bioethics, was so voluminous in regard to a single topic--empirical bioethics--that a single Target Article by Alexander Kon has 18 Open Peer Commentaries.
Social networking and direct-to-consumer genetic testing will change everything about how we understand our individual and our social health--or at least that is the theory advanced by some. New empirical data found by researchers from Baylor College of Medicine suggests that patients express interest in wanting personalized genome testing and that they expect their physicians to be able to interpret their results.
It also may change entirely how we do genomics "Research 2.0" and how we share information whether as researcher, patient, or the government, say authors Soo-Jin Lee and Crowley.
Visit bioethics.net to read the June-July issue of The American Journal of Bioethics and consider some of the most cutting edge issues of the day examined by the top scholars in the field.
Summer Johnson, PhD
Meet Emily Willingham
Those of you loyal blog.bioethics.net followers may have noticed a new voice here this week. I have been remiss in introducing Emily Willingham, PhD, who has graciously agreed to joined blog.bioethics.net as a guest blogger.
Emily will be writing in from Austin, TX as she did this week when Oprah's dubious scientific credentials really got under her skin.
Dr. Willingham has plenty to say on a wide range of topics and we are happy to hear her take. Here's why:
Dr. Willingham, double-trained in English and Biology from the University of Texas at Austin, has been a science writer for more than a decade. In addition to having been an assistant professor at Saint Edwards University, she has also authored more than two dozen scientific papers and in her "spare time" found time to write her own blog "about parenting, working, worrying, science, writing, and autism."
Keep an eye out for Emily's posts here on the blog. Welcome!
Summer Johnson, PhD
Merck Passes The Buck, Elsevier Fails to Go Far Enough in Phony Journal Scandal
As the story continues to unfold in the Elsevier-Merck phony journal scandal, one can hardly believe that at some point in the process of creating an entire division of not one, not six, but now we have learned from The Scientist today, 9 journals in the "Australasian Journal of' series".
Better yet, this wasn't an isolated series Elsevier has revealed: 13 more journals were in the words with ISSN numbers assigned to "journals" with names like the Australasian Journal of Psychiatry and Core Journals in Oncology. These, however, were never printed.
As Richard Gallagher pointed out in his editorial in this month's Scientist, "everyone makes mistakes--it's how you handle them that matters." Merck's current stance on all of these matters is as follows: "We believe that your remaining questions are most appropriately directed to Elsevier, the publisher of the Journal."
Simply because Elsevier took the bait doesn't mean Merck is off the hook. Elsevier is rightfully taking the heat for agreeing to create entire divisions of publications that an Elsevier spokesperson admitted "should not have been called 'journals'." What an admission! What to call a publication such as these really is the question--perhaps they will fade into oblivion such that we will not have to give them a name. Not a chance.
Elsevier says that they are drafting new policies, to be in place by the end of June such to prevent anything like this scandal again. Instead, they plan to create a clear delineation between the AJBJM's of the world and actual peer-reviewed journals: "to ensure that such publications are not confused with Elsevier's core peer reviewed journals and that the sponsorship of any publication is clearly disclosed."
There is one matter, that neither Merck nor Elsevier, is willing to put the spotlight on: how much money was spent on creating this phony journal empire. Elsevier maintains that it will not discuss its contractual arrangements with its clients--not an unreasonable posture under normal circumstances--but in this case, the public deserves to know what an academic publishing division can be bought for and turned into a marketing division for a pharmaceutical company.
If Elsevier really wants to put this scandal behind them, they must throw the doors open wide and disclose everything--including how much they were paid. Eventually the facts will come out. When they do--and I'm only guessing the figure is astronomical--Elsevier will look like they were hiding some very dirty laundry. Merck already is passing the buck and leave Elsevier holding the bag. Thus far it looks like they are succeeding.
If Elsevier wants to win that war, they should disclose everything and fast--for their own moral integrity, public confidence, and to put this huge debacle behind them. Only then will they be able to restore the sense that they are trying to do the right thing and that they have nothing more to hide.
Summer Johnson, PhD
Health Insurance Doesn't Prevent Huge Out of Pocket Costs
Over the last three years, according to research published in Health Affairs, out-of-pocket healthcare costs have increased 34% says WSJ.
Even having health insurance, it would seem doesn't appear to protect the average American against the rapidly escalating costs of health care and to prevent the health care system from taking a big bite out of household budgets.
The general consensus is that everyone is just paying more: employers paying more for premiums and employees paying more for co-pays and other out-of-pocket costs. In short, healthcare is just getting more expensive period.
The solution: no one seems to know. What we do know, according to this research, is that even insured Americans are underinsured and are paying it through the nose, or I guess, right out of their pockets. This seems downright unacceptable and time for a change.
Summer Johnson, PhD
Swine Reputation To Be Saved! Pig Stem Cells On The Way!
Just as swine flu is about to reach pandemic proportions according to the WHO, pigs are about to have their reputations saved by a recent discovery by Chinese researchers who say that cells from adult pigs have the ability to be coaxed into any type of cell in the body, just like embryonic stem cells. Fear pigs no more--they are about to save our lives--or better yet be swine flu resistant!
According to news reports, it's the malleability of these porcine cells that make them possible candidates for creating new organs for transplant, stem cell transplants, or breeding new strains of pigs resistant to swine flu.
The research has perhaps proven wrong after all that perhaps after all you can make, not a silk purse, but perhaps one heck of a xenograft out of a sow's ear.
Summer Johnson, PhD
The University of Oprah
Has anyone in the country--in the world--got an educational platform as large as Oprah's? Her power is enormous. She banks on the understanding that what women know determines how society rolls. A continuation of that concept is that the better educated women are, the better off society is.
Unfortunately, education at the University of Oprah can be iffy at best when it comes to accuracy in science and medicine.
Newsweek just published a huge article about the World According to Oprah. The O is fond of guests who speak to the spiritual in our lives, who seek to combine an understanding of the spirit with an understanding of the more material aspects of science and medicine. And that's great. However, it seems that this understanding comes sometimes at the price of misinformation. And sometimes, that misinformation isn't just a harmless recommendation to use a likely ineffectual skin cream. Sometimes, it's a matter of life or death.
One of the O's latest acolytes is Jenny McCarthy. McCarthy, a self-proclaimed graduate of Google U, has likely done more damage with her peddling of medical misinformation than just about any other celebrity. I won't get into the reasons why being a celebrity does not grant you medical expertise or why self-conferring a degree from Google U doesn't do the trick either. But McCarthy has gained notoriety in many well-informed circles because of the questionableness of a variety of her claims, most of them related to a debunked putuative link between vaccines and autism. Her claims have done serious damage to the efforts of public health officials to promote childhood vaccinations. It's a dangerous path to follow, one that currently leads in no vague way ultimately to avoidable deaths.
And Oprah now wants to give Ms. McCarthy her own show.
Scientists have done some excellent work, real research, exploring the mind-body connection. It's intriguing, it's valid, it's worth pursuing. But jumping the shark with the likes of Ms. McCarthy, whose sole contribution to such research is that she once considered her son to be an Indigo Child, is not the way to take advantage of the world's largest educational platform. Oprah does a disservice to women and society when she gives this kind of dangerous misinformation her show as a megaphone. The onus is on her to use her power for good. Especially for good information.
Emily Willingham, PhD
Death in the Midwest
Never mind the obvious disconnect between being "pro-life" and trying to make your point by killing someone in cold blood. Let's put that to the side for the moment and focus on something else: Dr. Tiller, shot to death this past weekend, was one of only three physicians in the country who provided abortions for women after the 21st week of pregnancy. Now there are two.
Two doctors in a nation of 300 million people. Some people seem to think that seeking an abortion after the 21-week time point is the pastime of lazy, demonic, murderous women and these blood-dripping doctors who abet them. The reality, however, is different. The reality is about gut-wrenching, heartbreaking decisions that have to do with death in the middle of life, of hopes battered and buried.
There are stories popping up now on the Web from people who learned that they needed Dr. Tiller, people who discovered later in a pregnancy that there was something lethally wrong with the pregnancy, with the fetus or the mother or both. Sometimes, even with all of our modern technology, these discoveries don't happen on a timetable with an arbitrary demarcation at 21 weeks. Sometimes, a happily pregnant woman learns that all the future and her womb hold is pain and death. That's when we need doctors like Dr. Tiller.
Dr. Tiller had already been shot in the arms for helping women in these situations of desperate need. Yet he returned to what he was doing. Do you wonder why? Here he is, in his own words. Do you wonder why he was shot again?
Of course, the primary blame goes to the murderer who killed him, shot him in cold blood inside of Dr. Tiller's Lutheran church as the doctor served as an usher. Shot him in cold blood while Mrs. Tiller sat in the choir, unknowing. Left him to die as another usher quietly fetched Mrs. Tiller from her seat in the choir and led her to where her husband lay. Where this father of four and grandfather of ten, this churchgoing Air Force veteran, died.
But who else is to blame? Let's point some fingers. How about starting with a society where a major presidential candidate feels comfortable mocking, with "air quotes," the need for women's health. Where it's OK to assume that women are lazy, stupid, uninformed, childlike creatures incapable of understanding a decision to terminate a pregnancy without the paternal helping hand of government and men and forced ultrasounds. Where it's OK to cry "murder" when a woman must make the gut-wrenching, horrific decision to terminate a late-term pregnancy that is lethal to the fetus and/or the mother. When it's OK for people to intrude themselves on the healthcare decision-making between a woman and her doctor because of an attitude that women simply cannot be trusted--weak, heartless, indecisive, selfish creatures that they are--to make these decisions like a grownup should. And finally, of course, there is the rhetoric of the anti-abortion movement, the bloody, homicidally drenched terminology that leads some of its followers to believe that interfering with these personal, heart-wrenching decisions is some form of holy war.
What do we have left now? For women and couples who learn that their late-stage pregnancy is lethal or destined for a brief life of intense pain and heartbreak, all we have left is two doctors, living under threat themselves. In a nation of 300 million people, is this the best we can do for women in their times of most heartbreaking need?
Emily Willingham, PhD
Pacino To Bring Kevorkian to the Silver Screen
So Jack Kevorkian's dream has come true. The flamboyant inventor of the Thanatron and part-time painter of rotting skulls will get his much longed for appearance on the silver screen. Barry Levinson the director who brought us the fictional, 'Homicide: Life on the
Street', has recruited Al Pacino (Al Pacino!!) to star in a forthcoming movie about Kevorkian. The non-fictional flick should be titled 'Homicide: Death in a Van.' Whatever it is called, it should prove to be quite a challenge to Hollywood sensibilities. Jack Kevorkian always presented himself as the underdog, hard at work for the little people, the helpless and the hopeless. Hollywood loves that story line.
But in truth, Jack was always all about Jack as much as the strangers he briefly met and dispatched. When I asked him once if he was aware that one of his victims had a long history of severe depression and had spend many years in a psychiatric hospital he snorted and replied 'How am I supposed to know all the details of her life?" Far be it from Jack to cloud his assessment of the reliability of a person's request to die with the details of the person's life.
There is a huge probability that Barry and Al will find the storyline of the principled doc bucking the establishment irresistible and Jack will find himself beatified on film. That would be most unfortunate. Jack Kevorkian, despite his skill in administering potassium chloride to the fearful, disabled, lonely and inadequately treated was a poor choice of leader for the movement to legalize assisted suicide. His personality and ego kept getting in the way of his heartfelt desire to offer assisted suicide to anyone who requested it. And his lack of knowledge of those he assisted in dying or killed outright made him such an easy target for critics that he wound up setting back the legalization of assisted suicide by many years. When Oregon and later Washington states finally did legalize assisted suicide that did follow closely what Jack had done and then made every effort to insure that there algorithm for assisted suicide bore absolutely no relationship to Jack's same day 'meet, greet and annihilate' service.
Levinson is no slouch when it comes to making movies. And Al Pacino is certainly familiar with killers having turned Michael Corleone into an American movie icon. Maybe they can avoid the temptation to canonize Jack. I wouldn't bet on it.
Arthur Caplan, PhD
