September 2007
The High Price of Caring for Slow-Healing Wounds
Triumphs of modern medicine - of rapid combat deployed medical theatres inside spaces that would truly shock and awe civilians, of battlefield neurosurgery, the ability to evacuate the horrifically injured to bases with the best technology and brightest minds - have dramatically cut down the loss of life on the battlefield, saving many who in prior wars would have been casualties of war.
But coming home, many of these veterans have discovered that although medicine has advanced, bureaucracy has not. This AP story covers how veterans are being cared for, and how they're not. The major problems something I have seen echoed in other stories, and heard first hand, are threefold:
First, and perhaps foremost, is the simple matter of math. In Vietnam and Korea, there were 3 wounded for every death. Now, because of the advances in battlefield medicine, body armour, and etc, the numbers have shifted dramatically - 16 wounded for every death. This is a good thing, except for when the high rate of wounded come back, needing care, and overwhelm a system that is still expecting to and designed to handle the number of casualties seen in previous wars.
This ties directly into the second issue, which is that the injuries sustained today are different injuries than in the past. This again is for a combination of reasons, but the result is that our veterans come home with injuries that do not heal within a short amount of time. They suffer long term, chronic conditions, the loss of limbs, brain or nervous system damage. By most accounts, the VA does an excellent job at handling the short term, immediate care, especially for the obvious wounds. The problem comes when rehabilitation is cut off early, if it ever begins, or mental distress such as PTSD crops up later.
And this is the third, perhaps largest, area for concern. There is a culture in the military that derides that which cannot be seen - mental illness, PTSD, anything that you can't slap a bandage on. If you can't see it to treat it, there is question of whether or not it's real. Or maybe you're just weak. Reports are out there of people being run out of service for PTSD, claims denied, counseling refused. Servicemen and women are lucky if they can get medication to sleep at night, let alone function through the day. According to the article I linked to, there 1.4 million troops have been deployed in the current war effort - yet less than 100,000 have been treated for PTSD.
The culture of shame is slowly changing - it has to, too many people are suffering. But it doesn't do a lot of good for the culture to change if the system doesn't change with it. As is, our medical care for veterans is continually failing those who have put everything on the line to do what their country has asked, regardless of their own personal feelings on these orders. Isn't it time we focused beyond the short term care of saving lives, and looked at the quality of the life, and the care given, further down the road?
-Kelly Hills
Art Caplan at MSNBC: Report paints grim picture of drug trial safety
Art writes that criticism of the FDA's weak oversight is on target, but Congress shares the blame:
When a bridge collapses in an American city or a mine implodes, it does not take long before government gets in motion to figure out what to do about the problem. We see the carnage and demand action.
When a federal agency charged with protecting your health and safety is found grossly deficient, the response, sadly, is mainly talk.
That is because it is hard to see where the victims are and, without them, it is hard to get the problem fixed. But when it comes to the Food and Drug Administration, we had better demand repairs.
Stephen Colbert: We must immunize kids against future expectations of health care
Colbert sets us straight on SCHIP reauthorization.
Following up: vCJD and donated sperm, HPV vaccine
Here are a few updates and extensions to recent posts on blog.bioethics.net:
Imported sperm shortage
After everyone seemed to have a good laugh about the ban on imports of donated Scandinavian sperm, Slate's Explainer took up the question of whether donated sperm could transmit vCJD. The Explainer's conclusion: probably not.
Glenn McGee in The Scientist: How Much Should Gardasil Cost?
Glenn argued last month in his column that Merck could cut the price for the HPV vaccine and still make out OK. This week the company announced it will be donating enough vaccine to immunize one million women in developing countries (retail value: $360 million). (via Bioethics News)
-Greg Dahlmann
Is "the hipster doctor" primary care's future?
Following up on Andrea's post yesterday about the number of un/underinsured people in the US, the web (or some corner of it) has been buzzing lately about Jay Parkinson. He's an MD who's set up a house call practice in Brooklyn aimed at uninsured younger adults. (He specifically mentions that he doesn't have interest in treating older people with chronic diseases.) The practice works on a retainer model: patients pay $500 a year, for which they get two in person visits (at home, work or wherever) and unlimited "e-visits." Parkinson also says he he will help patients find additional care (MRIs, prescription meds, etc.) for the lowest prices.
Parkinson's practice has been met by skepticism, both snarky and serious. Said the president of the American Academy of Family Physicians* to the NY Post about Parkinson, "I would be wary of anything diagnosed solely over the Internet ... video and e-mail should be a tool, not a primary driver." And at the Wall Street Journal's Health Blog, which has an interview with Parkinson, one commenter said, "A niche play. A cherrypicker too. Runny noses and lots of email chat about vitamins. Wake up with an acute abdomen and he'll pass you to someone willing to get his or her hands dirty." Parkinson responds to these criticisms in the comment thread and it's worth a read.
Maybe the most interesting part of Parkinson's plan is his pledge to help patients become better consumers of health care. Consumer directed medicine has been getting a lot of attention lately as a means of lowering costs. But people who need medical care aren't exactly in the best state of mind to go shopping around for the best quality and price. Parkinson promises to help people navigate that market. He's even looking to become an insurance agent so he can help patients find the best health plan if they decide that's what they need.
(via)
-Greg Dahlmann
photo: JayParkinsonMD.com
*corrected 2007-9-28 to include full name of the AAFP
How Many in The US Un/Underinsured?
Those of us in the public health community have been used to citing the statistic that anywhere between 43 and 48 million U.S. residents lack health insurance, but a new study released yesterday by Families USA, puts that number closer to 89.6 million U.S. residents younger than age 65, or about 34.7% of the population, who lacked health insurance at some point during 2006-2007. See the Florida Times-Union (Karkaria, Florida Times-Union, 9/21). The study, which examined Census Bureau data from 2006-2007 and 1999-2000, found that almost two-thirds of residents who lacked health insurance did not have coverage for six months or more and that more than half lacked coverage for nine months or more. In addition, the study found that 79.3% residents who lacked health insurance were from working families, with 70.6% employed full time and 8.7% employed part time (CQ HealthBeat, 9/20). The study also found that non-Hispanic whites accounted for 26% of residents who lacked health insurance, compared with 44.5% of non-Hispanic blacks and 60.7% of Hispanics (Florida Times-Union, 9/21).
Families USA Executive Director Ron Pollack said, "The huge number of people without health coverage over the past two years helps to explain why health care has become the top domestic issue in the 2008 presidential campaign," adding, "The expansion of health coverage in America is no longer simply a matter of altruism about other people but a matter of intense self-interest" (CQ HealthBeat, 9/20). In addition, Pollack said that he does not expect action by the federal government to address the issue "as long as the president is in the White House" (Griggs, Baton Rouge Advocate, 9/21).
The study is available online (.pdf).
Broadcast Coverage
American Public Media's "Marketplace Morning Report" on Thursday reported on the study. The segment includes comments from Pollack (Palmer, "Marketplace Morning Report," American Public Media, 9/20). Audio and a transcript of the segment are available online.
It's been 13 years since the Clinton health care plan crashed and burned. Now that this issue is really affecting the majority of the population, we may yet have another window of opportunity to reorganize our health care delivery, coverage, and reimbursement system to one that is more just. I'm keeping my fingers crossed as I search for a provider who accepts my insurance.
-Andrea Kalfoglou
Enhancement today
So vein: Hand surgery removes tell-tale sign of ageing
The UK's Daily Mail reports on the first three woman in that country to get surgery to remove supposedly unsightly veins in their hands. Said one woman to the paper:
For a decade or more the veins on the backs of my hands have been so prominent that they have looked like they belong to a 100-year-old woman, not someone almost half that age.
It has made me very self-conscious.
Like it or not, we live in an era where women are judged by the way they look, and I felt my hands let me down.
I've always taken chances, so when I heard about the new surgery - whose technical name is avulsions of hand veins - I didn't see what I had to lose.
The blog Jezebel might have the best line about all this: "Shrimp should be de-veined. Not hands." (via)
Leader rails at teen breast implants gift fad
Reuters reports that Venezuelan president Hugo Chavez is not happy about what seems to be the trendy quinceañera gift in his country. "Now some people think, 'My daughter's turning 15, let's give her breast enlargements.' That's horrible. It's the ultimate degeneration," said Chavez on his eight hour (!) TV show this past Sunday, according to the wire service.
-Greg Dahlmann
Sifting through the MacArthur winners
This week the MacArthur Foundation announced its list of fellowship recipients for 2007 (the so-called genius awards). Among the recipients who might be of interest around here:
(all descriptions from the foundation website)
Lisa Cooper
Johns Hopkins University
Public Health Physician improving the quality of medical care for minorities in the United States by analyzing and developing new approaches to patient-physician communication.
Michael Elowitz
California Institute of Technology
Molecular Biologist laying the groundwork for the next stage of the genomics revolution -- understanding how genes interact.
Saul Griffith
Squid Labs
Inventor engineering innovations spanning optics, high-performance materials, and nanotechnology in the service of the world community.
Yoky Matsuoka
University of Washington
Neuroroboticist devising complex prosthetic devices and rehabilitation strategies that hold life-changing potential for those suffering from brain injuries and manipulation disabilities.
Mark Roth
Fred Hutchinson Cancer Research Center
Biomedical Scientist experimenting with new procedures for temporary reduction in metabolism that may one day extend the time available to surgeons to perform critical, live-saving procedures.
Paul Rothemund
California Institute of Technology
Nanotechnologist folding DNA to create complex shapes and patterns that provide a platform for building circuits, molecular switches, and other nanodevices of the future.
Can't we all get along? Ethical tensions between medical journals and international health agencies
By Stuart Rennie
Last week, the Lancet (subscription required) came out with a stinging editorial about certain actions by the World Health Organization and UNICEF. The journal has never been shy to offer judgments and pronouncements in its editorial section, but this time, there are very pointed accusations of dishonesty and betrayal of trust.
According to the editors, a Kenyan team of researchers conducted a successful program of using anti-malarial bed nets to reduce risk of dying in children, and submitted a paper about the program to the Lancet. Like any sophisticated study of any complicated health topic, the results came with the usual caveats, in term of study limitations and unanswered questions. But on August 16th, the WHO came out with a glowing press statement about the study without the caveats, flatly declaring that the findings "end the debate on how to deliver long-lasting insecticidal nets." There is a backstory. The Kenyan researchers shared information about the study results to the WHO, on the understanding that the latter would treat this information as confidential until the results were published. But the WHO reneged on its promise, and issued its unnuanced (and baldly self-congratulatory) press release without even bothering to notify the researchers. Or the Lancet, for that matter, who obviously feel that they have been scooped. The editors rightly argue that when the data and interpretation of research on important health programs are complicated, statements from international health agencies should be issued at the same time as the study results are published, in order for readers to judge the health policy implications for themselves.
Perhaps even more troubling is the case involving UNICEF. There seems to be a market, so to speak, in child mortality figures. Who measures child mortality, how it is measured, and what the measures reveal is of no small interest to UNICEF, devoted as it is to the health, welfare and rights of children around the world. According to the Lancet editorial, UNICEF came to learn (via the Lancet itself) of a report the Lancet had accepted for publication showing disappointing results in the reduction of child mortality worldwide. Six days later, and months before it traditionally produces its annual report, UNICEF rounded up the press to advertise its claim that, according to its own figures, annual child mortality under the age of 5 had fallen under the 10 million mark for the first time in history. This time, the Lancet seems to feel more gutted than scooped: for what is the value of publishing a paper critical of child mortality reduction efforts when UNICEF has preemptively proclaimed its happy message?
The larger theme is the relationship between prestigious medical journals and influential health agencies. If those two examples are indicative of a trend, UN health agencies may be starting to regard the journals as an obstacle at worst, and a conduit of useful insider information at best. But if that sort of behavior keeps up, why should journals trust the research such agencies produce, and why should anyone trust their health policies and initiatives?
Stuart Rennie is a Research Assistant Professor in bioethics at UNC-Chapel Hill. He's project manager for the NIH/Fogarty bioethics grant and ethics consultant for UNC-Gap projects in the Democratic Republic of Congo and Madagascar.
How much is your personal health data worth?
The short answer: about $12.50.
The longer answer: This month Hearst, an old-school media company, bought Real Age, a web company, for what's reported to be about $100 million. You might recognize Real Age from the ads it's plastered all over the web (even sometimes here through Google ads) prompting people to take its health and lifestyle survey in order to determine their "real age." The results of this survey are then supposed to help point you in the direction of a healthier lifestyle, or at least, that's what that guy who wears scrubs on Oprah says. And after they've helped you lower your real age, what might all that lifestyle data be useful for? Yep, targeting ads and other products. According to a press release, Real Age has about 8 million users who have "opted in" to receive promotions and other communication from the company. And as the blog GetLuky pointed out, the self-reported health data that Real Age has collected about those 8 million people now belongs to Hearst. (Real Age's privacy policy is posted online, if you'd like to scan it. The policy is 2700 words long. Be sure to read the part where they claim the right to hold onto your data even if you delete it.)
So Real Age and its database of 8 million people sells for about $100 million -- that's approximately $12.50 per person. Now you know the going rate.
(via)
-Greg Dahlmann
Weekend reading
NYT: An Oracle for Our Time, Part Man, Part Machine
In the 1950s William Ross Ashby, a British psychiatrist and cyberneticist, anticipated something like this merger when he wrote about intelligence amplification -- human thinking leveraged by machines. But it is both kinds of intelligence, biological and electronic, that are being amplified. Unlike the grinning cyborgs envisioned by science fiction, the splicing is not between hardware and wetware but between software running on two different platforms.
Earlier this year, Jim Olds gathered a bunch of big thinkers at George Mason University for a two-day conference on the mind. He and his allies want the federal government to invest $4 billion in an initiative that would be called the "Decade of the Mind." This would be a follow-up to a 1990s program called the "Decade of the Brain," which brought increased attention to neuroscience. The new initiative would be an attempt to take science into a realm previously explored only by philosophers, theologians and mountaintop yogis.
"Brain science is an exhaustive collection of facts without a theory," Olds says. "This is for the nation as a whole to invest in one of the fundamental intellectual questions of what it is to be a human being."
In a letter published a few weeks ago in the journal Science, 10 scientists said that a Decade of the Mind would help us understand mental disorders that affect 50 million Americans and cost more than $400 billion a year. It might also aid in the development of intelligent machines and new computing techniques. A breakthrough in mind research, the scientists wrote, could have "broad and dramatic impacts on the economy, national security, and our social well-being."
Evolution and morality, continued
Olivia Judson, an evolutionary biologist and science writer, has a piece in The Atlantic this month about evolution and altruism. Alas, you have to be a subscriber to read it. But The Atlantic's site has posted an interview with her about the topic. Here's a snip:
I find it thought-provoking that you describe altruism as a kind of primal urge, not a rational behavior but a basic instinct like lust.
I think it is primal. Evolutionary biologists get very excited about things like suicide because if you commit suicide before you ever have offspring, your genes get removed from the population. In terms of cooperation, helping somebody else raise their own children and never having your own is a kind of genetic suicide, so evolutionary biologists get very excited about that. The question is, from a genetic perspective, why do these small acts of niceness happen?
I think it’s part of the evolution of social groupings. But maybe it has a bigger benefit, or maybe it just makes the creature feel good. Certainly our conscious explanation for why we do things isn’t usually that it allows us to have more children. Our conscious explanation is that we get a nice, warm, fuzzy feeling. And maybe baboons get warm, fuzzy feelings.
Is there a way to study the brain or nervous system of a primate and figure out whether he or she is actually experiencing a warm, fuzzy feeling?
It would be wonderful to be able to look into the thought processes of a chimpanzee. Brain scans are all the rage in humans right now, and yet, still, they’re pretty crude. We can see that blood flow increases to a particular brain area, and we make the assumption that if blood flow is increasing there, there’s more happening there. But that’s not the same as knowing what somebody is thinking.
In any case, this is a very complex area, the question of altruism. To a psychologist, I gather, if you get the warm, fuzzy feeling, you’re not being altruistic, because you actually enjoyed it. So to a psychologist, somebody is only being altruistic if they do something for somebody else and they don’t enjoy it. I think that’s a rather stringent definition, myself. I think you should be able to enjoy it.
And certainly in evolutionary terms, that would be the proximate mechanism. The fact that you enjoy helping somebody would be what mediates the activity—the sort of hormonal feedback that you get from an old woman smiling at you after you help her across the street or whatever.
-Greg Dahlmann
Starchild Abraham Cherrix update
Via Art Caplan comes this story reporting that Cherrix, the teen whose desire to forgo chemo led to a lawsuit and new state legislation, is now in remission after receiving radiation therapy and alternative treatments.
Previously...
+Solomon's Choice - Art's column at MSNBC about the compromise that led to Cherrix receiving radiation therapy
+Medical Neglect? The Abraham Cherrix Case
Imported sperm shortage
The New York Post reported on Sunday that an FDA ban on imported sperm from 30 countries because of concerns about Creutzfeldt-Jakob disease has supplies of Scandinavian sperm at Cryos International's NYC office running low (apparently Cryos is the place to go if you're looking for blond hair and blue eyes). That story prompted a number of follow ups, including this piece on CNN today about a woman who used Danish sperm for her first child and would like to again for her second. Cryos' NYC manager also appeared on NPR's Day to Day earlier this week to criticize the FDA ban. Both the CNN and NPR segments covered the apparent rise in "fertility tourism." In this case, it seems that US woman are heading to Denmark to obtain the sperm now in short supply here in the States.
Two thoughts about all this (maybe people who study reproductive ethics out there will have a few more):
-It would seem the data backs up Cryos' criticism of the FDA ban. A 2006 review paper concluded the chance of vCJD transmission via donated sperm is probably very low.
-This is a topic that people seem totally incapable of talking about without making a joke. The Post gave this story the usual Post treatment. CNN's John Roberts displayed a certain comic fascination. That NPR segment ended in a fit of giggling. And Cryos' ads for US donors feature a statue clad in red and white heart boxers (not to mention "Money! Sex! Karma!). Even a 2006 FDA advisory committee meeting featured jokes by the doctors testifying.
-Greg Dahlmann
September 2007 AJOB Neuroscience
The latest issue of AJOB Neuroscience features two target articles:
Propranolol and the Prevention of Post-Traumatic Stress Disorder: Is it Wrong to Erase the "Sting" of Bad Memories?
by Michael Henry, Jennifer R. Fishman, Stuart J. Youngner
Functional Neuroimaging and the Law: Trends and Directions for Future Scholarship
by Stacey A. Tovino
As always, each target article is accompanied by a group of peer commentaries. This month's issue also features two editorials: "Rethinking Neuroethics in the Light of the Extended Mind Thesis" by Neil Levy and "Not Forgetting Forgetting" by Judy Illes. The full text of the latter is available for free. Here's a snip:
In the context of law and justice, conversation about the potential of memory-erasing drugs or devices to interrupt the cycle of criminal activity often perpetuated by those who are themselves abused is yet untapped (Coxe and Holmes 2005; Weiler and Widom 2001). If interfering with memory could intervene with the anger, revenge, and hopelessness experienced by people who are abused - sufferers of a bona fide form of post-traumatic stress disorder in its own right - the impact on the way in which society views and enacts criminal punishment could be profound. The prison population in the United States alone has quadrupled to two million inmates since 1980 - an unprecedented explosion that is creating unprecedented costs. Surely, the personal and societal cost of rehabilitation and reintegration over incarceration of these individuals, especially children and adolescents, would be reduced. Difficult questions would need to be answered: What would a maintenance schedule for intervention look like? What would be the long-term effects, especially on the still-plastic young brain? What support systems would be needed and how they would be financed? Neuroimaging could be combined to predict behavior or recidivism but, as Stacey Tovino's (2007) target article suggests, how that could be achieved with acceptable accuracy and without coercion or stigma is an open question. Nevertheless, in asking the question of gain or loss, I would still wager gain. At the very least, new research will tell us about possible practical, tangible gain, even in the face enduring moral uncertainties.
New report: UK needs better guidelines for its forensic DNA database
The report is from the Nuffield Council and it calls for a number of changes to the way law enforcement agencies in the UK handle genetic information. (Britain is said to have the largest forensic DNA database in the world.) Among the report's (one page pdf summary) recommendations:
+ The police should only be allowed to store permanently bioinformation from people who are convicted of a crime, with the exception of people charged with serious violent or sexual offences.
+ Volunteers, including victims and witnesses, should be able to have their DNA removed from the National DNA Database at any time without having to give a reason.
+ An ethics and governance framework for the National DNA Database should be developed. An independent tribunal should also be established to oversee requests by individuals to have their DNA removed from the Database.
+ There should be a statutory basis for the regulation of forensic databases. This should include oversight of research and other access requests. The current legislative framework is patchy and piecemeal.
+ The establishment of a population-wide forensic DNA database cannot be justified at the current time. The potential benefits would not be great enough to justify the cost and intrusion to privacy.
(via)
-Greg Dahlmann
Should you have the tools to hack your brain?
The widespread distribution of neurofeedback games has some scientists a little worried, according to Wired:
Companies including Emotiv Systems and NeuroSky say they've released [brain-computer interface]-based software-development kits. Gaming companies may release BCI games next year, but many scientists worry that users brains' might be subject to negative effects.
For example, the devices sometimes force users to slow down their brain waves. Afterward, users have reported trouble focusing their attention.
"Imagine that somebody uses a game with slow brain-wave activity and then drives a car while still in that state," says Niels Birbaumer, a leading independent researcher in medical applications of BCIs. "You could have an accident. I think it's a rare possibility, but it should be tested before people do this."
Of course, the zen version of Halo isn't the only way to adjust your brain's function. There's a bunch of research indicating that meditation can have real effects on how the brain operates (here's a review paper on the subject -- drop "meditation eeg" into PubMed and a whole lot more will tumble out). And really, if you choose to tune your brain waves a particular way -- either through meditation or gaming -- isn't that between you and your brain? Or maybe biofeedback and its effects are more like alcohol and other drugs. Are we looking at a whole new thing to regulate?
-Greg Dahlmann
Evolution and morality
Today's Science Times includes an interesting article about Jonathan Haidt, a psychologist who studies morality. He hypothesizes that our brains have evolved two levels of morality:
Dr. Haidt (pronounced height) began his research career by probing the emotion of disgust. Testing people’s reactions to situations like that of a hungry family that cooked and ate its pet dog after it had become roadkill, he explored the phenomenon of moral dumbfounding -- when people feel strongly that something is wrong but cannot explain why.
Dumbfounding led him to view morality as driven by two separate mental systems, one ancient and one modern, though the mind is scarcely aware of the difference. The ancient system, which he calls moral intuition, is based on the emotion-laden moral behaviors that evolved before the development of language. The modern system -- he calls it moral judgment -- came after language, when people became able to articulate why something was right or wrong.
The emotional responses of moral intuition occur instantaneously -- they are primitive gut reactions that evolved to generate split-second decisions and enhance survival in a dangerous world. Moral judgment, on the other hand, comes later, as the conscious mind develops a plausible rationalization for the decision already arrived at through moral intuition.
Moral dumbfounding, in Dr. Haidt’s view, occurs when moral judgment fails to come up with a convincing explanation for what moral intuition has decided.
Over at Edge, Haidt talks about his research at length in his own words (and there's a discussion of those words).
Tangential question: Depending on whom you ask, morality is either a social construct, the law of our deity, or an evolutionary adaptation -- but does it ultimately matter? If morality is the product of evolution, does that make it any more or less "right" than if comes from some other source?
-Greg Dahlmann
Art Caplan at MSNBC: Giving up on gene therapy is wrong reaction
Art writes that the death of Jolee Mohr should lead to new patient protections:
The recent death of Jolee Mohr is likely to have a seismic impact on the future of gene therapy research.
Biotech companies, private investors and government funders will shy away from sponsoring further research because Mohr died while a subject in an experiment using genetic engineering to treat disease.
But giving up on gene therapy is not the right lesson to learn from this tragedy.
Universal health care watch
Clinton unveils mandatory health care insurance plan (CNN)
It's a version of the "health insurance like car insurance" approach that's been bubbling for the last few years and took some form in Massachusetts under Mitt Romney. The Clinton plan also aims to "end discrimination [by health insurance companies] based on pre-existing conditions or expectations of illness and ensure high value for every premium dollar." The price tag is quoted at $110 billion.
"Healthy San Francisco" debuts (SF Examiner)
The plan aims to provide coverage to the 82,000 residents currently without health insurance. It's funded in part by taxes on employers, which has led to a lawsuit charging that the requirement violates federal law.
Cancer society ads push health reform (AP)
The American Cancer Society is spending $15 million on an ad campaign calling for people to take on the nation's "unfixed" health care system. Interesting fact: according the AP, the ACS is the nation's richest health charity.
Not all favor SCHIP expansion (Marketplace)
A few interesting quotes from John Dimsdale's piece about SCHIP reauthorization. A rep from the National Association of Health Underwriters cautions that public funding of health care "leave[s] millions of dollars of employer money on the table." And this from the director of the Center for Medicaid and State Operations:
The government programs are now starting to compete with the private programs. The way insurance pools work best is having as many lives as possible in that insurance pool where you are spreading the risk. You get caught in a spiraling effect when you start taking people out of the pool.
-Greg Dahlmann
Breaking News: Vatican Says Vegetative patients have moral right to food, hydration
The Vatican has released a ruling today clarifying the Catholic position on food and hydration to patients in persistent vegetative states who are not expected to recover from their injuries.
The Vatican said that patients in a vegetative state, with few exceptions, have a moral right to artificial food and hydration. “In this way suffering and death by starvation and dehydration are prevented,” according to a statement released by the Vatican and approved by Pope Benedict XVI.Nutrition and hydration support are not obligatory when such care becomes “excessively burdensome” or when patients cannot assimilate food and liquids “so that their provision becomes altogether useless,” the Vatican’s Congregation of the Doctrine of Faith wrote in a statement.
At the basis of the ruling is the moral belief that tube-feeding those near death is an "ordinary" state, and that the basic human dignity of the patient means that care should not stop.
The clarification becomes important because although Catholic doctrine does oppose euthanasia, it allows for the cessation of heroic, futile (extraordinary, and potentially painful) efforts. At question, then, has been whether or not tube-nourishment constitutes extraordinary or heroic efforts that are therefore optional under Catholic doctrine.
Ultimately, this affects more than "just" Catholics - many hospitals around the world are run by Catholic organizations who will feel bound by the ruling, and will enforce the decisions stemming from it regardless of whether or not the patient themself is Catholic.
-Kelly Hills
WP: Organ procurers may be pushing a little too hard for donations
Via Art Caplan comes an article by Rob Stein in today's Washington Post about what seems like an increased aggressiveness on the part of organ procurement organizations:
"I personally am very supportive of organ donation. But people I work with sometimes feel they are too pushy," said Mary Henman, an intensive care nurse at Meriter Hospital in Madison, Wis., stressing that she was not speaking on behalf of the hospital. "I think their enthusiasm for their ultimate goal kind of causes them to sometimes lose sight of the fact that the general public has some qualms about organ donation."
At Emanuel Medical Center in Turlock, Calif., neurologist Narges Pazouki said an OPO representative pressed her this summer to declare a patient brain-dead before the appropriate tests had been done.
"I told them, 'It's too soon for you to be involved. Let us do our job,' " Pazouki said.
In many hospitals, organ network representatives now routinely comb through patients' records looking for potential donors.
"It's like they're vultures flying around the hospitals hovering over beds waiting for them to die so they can grab the organs," said Michael Grodin, a Boston University bioethicist. "That's the impression you get sometimes."
Art also appears in the story:
"The greatest fear the public has when it comes to organ donation is their loved one will not receive aggressive treatment and will wind up having their death hastened because of the zeal people have to get organs," said Arthur Caplan, a University of Pennsylvania bioethicist. "You create a tremendous fear on the part of the public whenever any crossing of that line takes place."
Birthing a patriot
As a public service message to our all readers in the greater Ulyanovsk region, today is the Day of Conception. That's right, you and your partner can take the day off and do your part to stem Russia's declining birthrate. And why today? Well, it's 9 months before June 12 -- Lenin's birthday. The lucky couple able to deliver a child on that day next year wins a free SUV! (That's one above!)
-Greg Dahlmann
photo: UAZ
Toward a theory of life
Seed recently posted an interesting article from Carl Zimmer about the multidisciplinary effort to develop a theory -- instead of a defintion -- of life:
"A science in which the most important object has no definition—that's absolutely unacceptable," says [Radu Popa, geobiologist and the author of Between Probability and Necessity: Searching for the Definition and Origin of Life]. "How are we going to discuss it if you believe the definition of life has something to do with DNA and I think it has something to do with dynamic systems? We cannot have a conversation on any level. We cannot make artificial life because we cannot agree on what life is. We cannot find life on Mars because we cannot agree on what life represents."
Recently, a new voice has entered the debate. Carol Cleland, who teaches philosophy at the University of Colorado and works with the NASA Astrobiology Institute -- essentially as their philosopher-in-residence -- is making a more radical argument: Scientists should simply give up looking for a definition of life. They can't even begin to understand what life really is, she claims, until they find forms of life profoundly different from those we know here on Earth. Only when we can compare alien life with life on our planet will we understand the true nature of this ubiquitous, ephemeral thing.
(via)
-Greg Dahlmann
Fast food off the menu?
The LA Times reported this week that the Los Angeles city council will soon be considering an ordinance that bans new fast food restaurants in South LA. (via) The reason: the obesity rate in that part of the city is approaching 30 percent.
The thinking behind this proposed ban is interesting. Here's what a city councilwoman told the Times: "The people don't want them, but when they don't have any other options, they may gravitate to what's there." In other words, the people of South LA need the government to protect them from fast food. It's like people there are suffering a crime wave and the prime suspect was last seen wearing an obnoxious red wig.
In a sense, there might be some truth to that statement. There's been much talk among obesity researchers about the toxic food environment. And with a genome that evolved during times of scarcity, most of us are gonna have a tough time holding back when super cheap calories are everywhere. But do we need Big Brother kicking Ronald in the shins, telling him to step off? Should it be the job of government to help us resist?
This proposed ban might seem outrageous, but it's really just another dot on a long trend line of government intervention. For years, governments have kept a hand on alcohol distribution by (not) issuing liquor licenses. Many states now ban smoking in restaurants. A few others have kicked trans-fat to the curb. And Chicago banned foie gras for ethical reasons. The state is already sitting at the table. Most of us are probably OK with that.
We give up these choices on the hope that we're exchanging them for a better outcome. In the case of this latest story, should the LA city council be making this decision for the people of South LA? Does it have a reasonable expection people there will be better off?
Most fast food isn't healthy, but it's not like a lot other restaurant food is, either. Swapping the Colonel for Thomas Keller may appeal to our sense of culture. It doesn't guarantee we'll be any slimmer.
-Greg Dahlmann
Glenn McGee in The Scientist: Me First!
Glenn's column for September proposes two rules for fixing the system of academic authorship:
This spring, The Scientist received a letter signed by Fertility and Sterility editor Alan DeCherney, asking to retract comments he made three months earlier, in which he accused authors of an F&S paper of plagiarism. The authors of the 2005 paper, on mitochondrial DNA in ovarian failure, are still facing allegations from a scientist who claims they stole his research and left him off the author list.
Authorship disputes are a fairly regular occurrence in science, a natural offshoot of the oppressive demands of a "publish or perish" system. So much can be at stake: If a postdoc or young professor receives that all-important top billing of first author, they are more likely to earn tenure, or a lifetime-guaranteed career. (See "Does Tenure Need to Change?")
There are so many problems with the current system of scientific authorship, it's hard to know where to start looking for solutions. Physicians and professors are offered authorship of virtually or totally completed papers by companies whose medical writers and scientists have completed the bulk, or all, of the work. This past January, a study in PLoS Medicine revealed that two-thirds of industry-initiated randomized trials contained evidence of ghost authorship. (1)
All too frequently, scientists allege that some senior faculty claim senior authorship on every paper that originates in their labs, even if they were only marginally involved. And, authors don't know what each other is doing: Another January study in the Canadian Medical Association Journal (CMAJ) found that more than two-thirds of 919 corresponding authors disagreed with their coauthors over contributions to the paper. (2)
According to the International Committee of Medical Journal Editors (ICMJE), authors must offer "substantial" contributions to the design or data, draft or revise the manuscript, and give final approval of the finished version. Anyone who does not meet these criteria, the ICMJE says, must be listed as a contributor in the acknowledgements section. These rules are simple, straightforward, but not followed: In the CMAJ report, only 3 of 10 noncorresponding authors interviewed met all the ICMJE criteria for authorship.
Clearly, the safeguards we currently have to ensure proper authorship are not working. It's not enough to ask authors to take responsibility for authorship; journal editors and institutions must be accountable, as well. I propose two new rules to help restore fairness in scientific authorship.
About medical publishing and advertising
The web delivered a bit of a serendipitous dialectic today on the subject of how medical journals pay the bills. This morning, the New York Times published a story about the launch of OncologySTAT, Reed Elsevier's new ad-supported portal for cancer research. The publisher's plan basically goes like this:
1. Aggregate cancer research
2. Get doctors to register to use the site by providing free access
3. Tell pharmaceutical advertisers about all the doctors gathered in one place
4. Profit
NYT reports that Elsevier's medical journals are making money, but revenue is flat. The company hopes this new model will generate higher profits and provide a workable strategy in the future as everything heads online.
If that's the thesis, here's the antithesis (of sorts). This afternoon Slate published a piece by Kent Sepkowitz that criticizes medical journals for... their cozy relationship with pharmaceutical advertisers. Sepkowitz argues that if journal authors must submit to conflict of interest disclosure, so too should journals. His solution? Each journal issue should include stats about current advertisers and how much coin they've dropped for display ads, special sections and reprints.
So, is there a synthesis to be found here?
-Greg Dahlmann
NIH awards Northwestern $21 mil for studying oncofertility
The grant goes to the lab of Teresa Woodruff, who coined the term "oncofertility." From Northwestern's press release:
When a woman is diagnosed with cancer, her treatment has a laser-like focus to save her life. But the powerful chemotherapy and radiation that cures cancer or sends it into remission can destroy a woman's ability to conceive children. The goal of the new program is to significantly alter how the medical world cares for female cancer patients and promote a new consciousness to protect their reproductive health.
...
The Oncofertility Consortium is comprised of an interdisciplinary team of biomedical and social scientists, oncologists, pediatricians, engineers, educators, social workers and medical ethicists from Northwestern and the University of California-San Diego, University of Pennsylvania, University of Missouri-Columbia and Oregon Health & Science University. Its research will include a thorough examination of the scientific, medical, psychological, legal and ethical issues surrounding infertility and cancer.
Consortium members will work together on scientific, medical, psychological, legal and ethical issues surrounding the use of advanced reproductive technologies in cancer patients. Researchers will investigate how young women will be able to afford these new technologies. The consortium also will assess how extraordinary stress affects women's decisions and will develop new strategies to improve the quality of communications with newly diagnosed cancer patients.
Weekend reading
NYT: A Drug Maker's Views of What Ails Health Care
Via Art Caplan comes this interview with the chief executive of Novartis:
Q. Is the pharmaceutical industry part of the cure or part of the problem?
A. If you look at the mortality rates from hypertensive heart disease or stroke or gastrointestinal bleeding or cancer, in the past 40 years, these diseases have declined as the cause of mortality by 60 to 70 percent. Medicine has made huge progress and to a large part it’s due to better pharmaceuticals.
Having said that, the prices have increased significantly. People are starting to ask, “Is it too expensive?” There are, of course, internal costs which one has to take into account. We have invested 17 percent more, year after year, in the past six years for research and development. Externally, clinical studies have become longer and more difficult. And regulatory authorities, especially the F.D.A., have become extremely risk-averse, increasing the risks of research dramatically. That is all contributing to the cost of pharmaceuticals.
WP: Va. Studies Directives Giving the Mentally Ill A Say in Their Care
WaPo estimates that about 24 states have laws allowing people with mental illness to set up psychiatric advance directives:
"It's something that has made life much, much more manageable, where I don't have to be so afraid anymore," said Anders, who said she first had bipolar disorder diagnosed 30 years ago. "It helps me trust that I'm going to get the right care when I need it."
Some mental health experts, however, question the power and practicality of the documents, as well as their necessity.
In several states, clauses allow people with such illnesses to revoke their directives, even in the midst of a psychotic episode. Officials in those states often give the power of revocability to patients because they say ignoring the protestations -- even in situations where refusal of some medications is frequent -- could amount to coercive treatment.
"An irrevocability clause really equates to forced medication unless the person is sitting passively and accepts the medication," said Robert Fleischner, a staff attorney at the Center for Public Representation, a disability law firm in Northampton, Mass., that has done work on the documents.
Economist: Humane league
Genetic engineering could lead to fewer and more humane experiments on animals -- maybe:
[A researcher at China's National Institute for the Control of Pharmaceutical and Biological Products] is fitting mice with the human receptor for the polio virus. Mice modified in this way are more sensitive to the virus than their unmodified cousins, so subtle changes in batches of vaccine can be identified. Such tests are cheaper than those which use monkeys. They are also quicker. It takes two months of monkey-watching to be sure that a batch is safe. A mouse will tell you in two weeks.
Yet replacing monkeys with mice does not cut the number of animals used. Indeed, since researchers started employing genetically altered animals this way, that number has been creeping back up. It is worth questioning how many of the tests now conducted are necessary.
-Greg Dahlmann
The ethics of the research that helps us understand Larry Craig
A footnote to the bizarre tragicomedy in which Larry Craig now appears is a doctoral dissertation from the 1960s by a researcher named Laud Humphreys. While a grad student at Washington University in St. Louis, Humphreys conducted an ethnography of men who had sex with men in public bathrooms. His research was later published as a book, Tearoom Trade: Impersonal Sex in Public Places. Humphreys' study revealed a complicated subculture, one that was shocking to many people and challenged stereotypes: many of the men were married, didn't identify as being gay and had a socially and politically conservative public persona.
The methods Humphreys used to obtain this information have become a text book case of unethical research. Humphreys did tell some of his subjects about his research, but he also secretly followed other subjects and interviewed them at their homes under the guise of a "social health survey." It's the kind of stuff you'd never get by an IRB. Of course, Humphreys didn't have to -- IRBs didn't exist when he conducted his study.
So, what should we make of all this today? To some, Humphreys is a person to admire, flaws and all. His research helps us better understand the (maybe not so) bizarre situation surrounding Larry Craig. And the concept of a man who doesn't identify as gay, yet still has sex with men, has become important to public health campaigns and studying the epidemiology of sexually transmitted infections. But there's still that residue of research impropriety. What, if anything, do we do about that? Is it enough to acknowledge the mistakes and vow to do better?
-Greg Dahlmann
image: Amazon - "Mike's Library"
Art Caplan at MSNBC: Students' meningitis shots should be required
Art writes that Americans hate being told what to do, but we hate losing our kids more:
Which is scarier to you - coming down with deadly bacterial meningitis or being required to get a vaccination against it? The disease itself should scare the living daylights out of you, especially if you are an adolescent or the parent of one. Yet it is the idea of mandatory vaccination that strikes fear in many.
We need to get our priorities straight when it comes to mandating or requiring vaccines. When there is a fatal disease that is easily prevented by a safe vaccine, the shot ought to win out every time over our dislike of being told what to do.
Bacterial meningitis, an infection of the fluid in the spinal cord or the tissues that surround the brain, can kill within hours. One in 10 victims dies and up to 20 percent of those who survive suffer hearing loss, deafness, brain damage, amputations or other serious complications. Around 3,000 people a year get the disease and it can kill within hours. Almost all of that is preventable with a vaccine.
UK approves human-animal embryos
After what it calls "a series of detailed deliberative sessions", Britain's Human Fertilisation and Embryology Authority gave the go ahead Wednesday for the creation of embryos that would contain both human and animal cells. Such research is banned in Canada and President Bush has called for it to be forbidden in the US*. Here's more from HEFA's statement:
Having looked at all the evidence the Authority has decided that there is no fundamental reason to prevent cytoplasmic hybrid research. However, public opinion is very finely divided with people generally opposed to this research unless it is tightly regulated and it is likely to lead to scientific or medical advancements.
This is not a total green light for cytoplasmic hybrid research, but recognition that this area of research can, with caution and careful scrutiny, be permitted. Individual research teams should be able to undertake research projects involving the creation of cytoplasmic hybrid embryos if they can demonstrate, to the satisfaction of an HFEA licence committee, that their planned research project is both necessary and desirable. They must also meet the overall standards required by the HFEA for any embryo research.
There are already two applications for human animal chimeric embryo research before the regulatory panel. The applications include proposals to inject human DNA into the embryos of cows or rabbits, ultimately in an effort to produce stem cells.
The May 2007 AJOB Neuroscience featured a target article about the proposed human neuron mouse. This summer Hank Greely, one of the target article's authors, and Francoise Baylis, who authored a peer commentary, both appeared on a bioethics.net podcast to talk about the ethical implications of human-animal chimeras.
-Greg Dahlmann
*Or, at least, we think he did. In the State of the Union Address, Mr. Bush used the term "hybrid" which isn't the same thing as a chimera. US Senator Sam Brownback (R-KS) has proposed legislation to ban human animal chimeras (the bill actually uses the word) and apparently the President supports this legislation.
Following up: databases, presidential health and robots
Here are a few updates and extensions to recent posts on blog.bioethics.net:
Caught in the database
Every week seems to bring a new story about someone getting caught, found out or otherwise tagged unexpectantly by geographic databases. The NY Post reported recently that a carpentry supervisor for the NYC school system was sacked after officials decided his time sheets didn't match the GPS data from his school-issued phone. And in the UK, The Times reports that local governments are using airplanes with heat-sensing cameras and GIS to shame people for having poorly insulated homes. That's one of the maps above. (via)
The bullseye on Bush
It's always great when people with expertise on a given subject take the time to comment. So, we were delighted to see Rob Streiffer contribute a comment on our post about presidents and medical privacy:
There are several related questions here: does the President have a right to medical privacy is one, but another distinct (albeit related) question is what the President is morally required to disclose. The fact (at least, I think it is a fact) that the President has a right to medical privacy that would prevent unconsented disclosure is consistent with the President's being morally required to disclose. In the context of presidential candidates, Julie Fagan, Alan Rubel, and I have articulated and defended a standard that requires disclosure of any medical conditions that are likely to seriously undermine the President's ability to fulfill the core functions of the office of the presidency (Med and Phl, 2006). Considerations include the interest the candidates have in maintaining privacy, the interest the public has in not being mislead by sensationalist reporting of trivial conditions (one of the headlines is "White House hid Bush's Lyme Disease"), people's right to information necessary for making informed voting decisions (derived from their right to be governed only with their consent).
From what I understand about the implications of lyme disease, and how easily it is treated if identified early, I don't think a strong case could be made that it would satisfy our standard. Since I think our standard also serves as a helpful guide to what the news media should be focusing on, I think it safe to say that the media has more important things to be informed the American public about right now.
NYT: The Real Transformers
About a month ago we posted a pointer to an article in the NYT Mag about the development of sociable robots. One of the barriers to building robots or computers that can sociably interact with humans is that we use and shade language in all sorts of subtle -- or even intentionally wrong -- ways. Jokes are just one example. Well, two researchers at the University of Cincinnati have developed a software bot that can recognize knock-knock jokes.
-Greg Dahlmann
image: Haringey Council
Wired: three smart things about genomics
The mag breaks out three important lessons from genomics. Here's number one:
The real benefit of studying genomes is that it has taught us how little we know. We used to think noncoding "junk" DNA didn't do anything. Now it turns out it may contain underlying instructions for how DNA works.
The other two are worth checking out.
On a related note in the same issue, Wired's Jargon Watch spots "Microbesoft," a derisive name supposedly tagged to Craig Venter's Synthetic Geonomics for its effort to patent synthetic microbes. If you have a few minutes, you might find it interesting to skim over the Venter Institute's patent application for Mycoplasma laboratorium -- it almost reads like it's describing a tiny machine more than an organism.
-Greg Dahlmann
Setback for terminally ill patients seeking experimental drugs
By Alicia Ouellette
The Abigail Alliance for Better Access to Developmental Drugs suffered a major (and perhaps fatal) setback in its battle to establish for terminally ill patients a constitutional right of access to experimental drugs. In an 8-2 ruling, the full U.S. Court of Appeals for the District of Columbia reversed a May 2006 ruling by a divided three-judge appeals panel, which recognized such a right (pdf of the decision).
After describing in some detail the FDA process for approval of new drugs, including FDA programs designed to provide early access to promising experimental drugs, the Court rejected the argument that "where there are no alternative government-approved treatment options, a terminally ill, mentally competent adult patient's informed access to potentially life-saving investigational new drugs determined by the FDA after Phase I trials to be sufficiently safe for expanded human trials warrants protection under the Due Process Clause."
Writing for the majority, Judge Thomas Griffith stated that "the Alliance's argument ignores our Nation's history of drug safety regulation. . .. [T]he Alliance [cannot] override current FDA regulations simply by insisting that drugs which have completed Phase It esting are safe enough for terminally ill patients. Current law bars public access to drugs undergoing clinical testing on safety grounds. The fact that a drug has emerged from Phase I with a determination that it is safe for limited clinical testing in a controlled and closely-monitored environment after detailed scrutiny of each trial participant does not mean that a drug is safe for use beyond supervised trials. FDA regulation of post- Phase I drugs is entirely consistent with our historical tradition of prohibiting the sale of unsafe drugs."
The Abigail Alliance is sure to seek review by the Supreme Court.
Alicia Ouellette directs the program on Health Law and Bioethics at Albany Law School and the Alden March Bioethics Institute.
Head of BMA: Many obese people are 'greedy'
The UK's Evening Standard reports that Dr. Hamish Meldrum, chairman of the British Medical Association (that's him on the right), is taking issue with how doctors in his country have approached obesity. In the doctor's own words:
"We are saying, 'This patient has a hyper-appetite problem' rather than, 'They are just greedy.'
"People like to put fancy labels that suggest things are a medical problem. But [obesity] is not just a problem for GPs, it is societal.
"We are in danger of over-medicalising. The evidence of anti-obesity drugs is not good. The evidence for effective intervention in primary care for obesity is very weak."
As you might expect, Dr. Meldrum's thoughts have set off a bit of a row in the UK. His choice of words has been called "troublesome," though others have remarked that the doctor's comments are part of "an outbreak of candor."
-article pointer via Art Caplan
photo: BMA
New paper on homeschooled kids and vaccinations
Art Caplan and Donya Khalili -- a student at UPenn School of Law -- write in the latest issue of The Journal of Law, Medicine & Ethics about strengthening the systems set up to ensure homeschooled kids get their shots. Here's the abstract:
To protect public health, states require that parents have their children immunized before they are permitted to attend public or private school. But for homeschooled children, the rules vary. With the spectacular growth in the number of homeschooled students, it is becoming more difficult to reach these youth to ensure that they are immunized at all. These children are frequently unvaccinated, leaving them open to infection with diseases that are all but stamped out in the United States with immunization requirements. States should encourage parents to get their homeschooled students vaccinated through enacting the same laws as those used for public school students. This could be done by enforcing current laws through neglect petitions or by requiring that children be immunized before participating in school sponsored programs. As most states require some filing to allow parents to homeschool their children, it would be easy to enact laws requiring that homeschooled children be immunized or exempted before completing registration.