blog.bioethics.net

From 1918 to 1976 to Today: A Swine Flu Memoir

It wasn't all that long ago that Ricki Lewis, guest editor for The American Journal of Bioethics and guest blogger for blog.bioethics.net wrote a post called "A 1918 Flu Memoir" published here and in The Journal.

Scientifically interesting and from a human perspective, Lewis' essay now has taken on a whole new light. The letters "H1N1" back then really didn't have that much meaning, or at least certainly not the meaning they do now. Now that alphabet and number soup has replaced "swine" as the key symbol representing what the potential to become a pandemic. Because really, who wants to be afraid of a pig? Certainly the pork producers of North America and the world don't want us to be. Plus, it's not accurate--as we have learned from our crash course in virology the last few days--this thing is a mix of avian, human, and porcine virus anyway (read more here). No reason to blame Porky.

We don't know as individuals whether to be afraid for ourselves or for our children as we watch schools close in San Francisco and Fort Worth. As a nation, we remember other epidemics: the much more recent and vivid SARS.

Hardly anyone remembers that we've had a run-in, as a nation, with swine flu before. As the media is keen to point out, once before we've been shaking in our shoes over a potential pandemic from something scarily called "swine flu", but that pandemic in 1976 never came. Yet, one would hardly want to argue, although some seem to be making that implicit argument, that because there is the chance that a rapidly spreading virus could always burn itself out, that we not prepare for a potential pandemic. I'm glad these journalists did not decide to go into the public health service. Obviously they've never taken epidemiology.

More frighteningly, it's these same media outlets and journalists that influence us in countless ways--exciting us, inciting us, calming us and placating us. They downplay, it dramatizes. Without doing primary research on websites like the CDC, pandemicflu.gov or WHO oneself, it's almost impossible to know what is really going on in the world, and even then it's not entirely obvious.

What is clear today? What we comfortably used to call swine flu is now called something perplexingly known as H1N1 influenza harkening us back to 1918. If you feel sick, you should go to a doctor. Carry Purell wherever you go. Don't fear pigs.

As for the rest, it's still completely uncertain. Will 2009 be more like 1918 or 1976 or somewhere in between? Only time will tell.

Summer Johnson, PhD

Latest AJOB Neuroscience Issue is Now Available!

The May issue of The American Journal of Bioethics is now available at bioethics.net. This issue of AJOB-Neuroscience confronts some important issues about the role of animal research in understanding the human brain and clinical studies involving humans and the ethics of that research.

To read about why doing research on primates is necessary and important for stroke research and why NOT doing animal research is detrimental to science and human progress and is in fact, perhaps, unethical, read more from Sughrue and colleagues.

If you have ever wondered about the range of ethical considerations involved in treating Parkinson's patients with cellular-based interventions, the target article addresses multiple considerations at stake in this kind of research. Duggan et al consider these and more.

To read more, including a review of Michael Gazzaniga's book, Human, visit bioethics.net to find out more about the latest issue of AJOB Neuroscience.

Summer Johnson, PhD

Stem Cell Research in South Korea: Here We Go Again?

The South Koreans have decided to hop on the human embryonic stem cell research merry-go-round again, conditionally lifting a ban on the use of human eggs in research says AFP.

But will the ethics safeguards put in place be enough to ensure that this time the fraud and ethics violations that Hwang Woo-Suk perpetrated will be avoided? We all know that putting research ethics requirements in place doesn't mean that researchers will follow them, but the heightened awareness this time around certainly makes it more likely.

It is laudable that the "four conditions" placed on the researchers by the South Korean national bioethics committee do put a important emphasis on minimizing the number of human eggs used in research (in favor of animal eggs), getting informed consent from all donors, setting up a review committee, and reviewing all materials to prevent therapeutic misconception in potential participants in the study.

This seems to address many of the important issues at stake in stem cell research and early stage clinical trials. Perhaps South Korea is on its way to repairing its reputation as a stem cell leader and the damage done by Hwang Woo-Suk's ethical breaches. Of course, the proof will have to be in the pudding, or shall we say, in the research.

Summer Johnson, PhD

The Two Ruths Say Wash Your Hands and Don't Panic.

At the risk of blog.bioethics.net becoming the porcinefluenza.bioethics.net, I had to post at least one more commentary today about the swine flu epidemic.

Ruth Karron and Ruth Faden from Johns Hopkins Bloomberg School of Public Health weigh in at the New York Times answering the question, "Swine Flu: A Cause for Panic?" Their answer: Nah. Just wash your hands more often.

Seems like sage advice. Especially since there's not much else you can do to avoid influenza except to literally live under a rock or in an vacuum-sealed room for the next few weeks or months until the epidemic/pandemic has passed.

Since for most of us our careers (unless you are a blogger!) and family lives require social interaction that by necessity mean potential exposure to influenza in a pandemic situation, it's just not an option to be hermetically sealed away from the world. I agree with the two Ruths that our best option is to remain calm and to, as Art Caplan said as well, to sit tight and wash our hands often.

Summer Johnson, PhD

Former PCBE Member Tells University of Notre Dame to Take a Flying Leap

Former President's Council on Bioethics member and Harvard Law Professor, Mary Ann Glendon, has told the University of Notre Dame to take the honor it wished to bestow upon her and kindly have it back. Why? Evidently, she doesn't think that President Obama shares the same notions of social justice as the she and the Roman Catholic Church.

Glendon, a "prominent Roman Catholic conservative", as described by the Chronicle of Higher Education, was chosen by Leon Kass to serve on the first Bush bioethics council back in 2001. Now, it would appear she is breaking Catholic hearts around the world by telling one of their most beloved universities that Laetare Medal, which was to be awarded to her at commencement, isn't going to be hers simply because President Obama is going to be awarded an honorary degree as well at the same ceremony. Appalled that such a man would be gracing the same stage as she, Glendon will have no part of it.

Never mind that she served on a presidential bioethics commission for a president that condoned torture of detained prisoners or that the very same president launched us into two wars causing thousands of lives to be lost without justification (hardly promoting Catholic values). For a Roman Catholic who staunchly supports the preservation of life, it would seem to be at odds with the president she served--and it seems difficult to see what she could possibly object to in the first 100 days of the Obama presidency, aside from pure partisanship.

Glendon, however, appears to believe that she and the Catholic Church do not see eye to eye with President Obama on another important view--justice. From a letter she wrote, she says: "to honor a prominent and uncompromising opponent of the church's position on issues involving fundamental principles of justice." Really, Professor Glendon? In what way does President Obama differ from Roman Catholics on principles of justice? Do you mean social justice? In that he supports giving access to healthcare for all Americans? Or perhaps ensuring that all people, regardless of the color of their skin, can go to quality public or private schools? Or shoring up the economy so jobs stay in this country so that everyone is on a fair playing field?

Or perhaps you mean some other notion of justice, Professor Glendon?

Aside from the admonition from American bishops that "not honor those who act in defiance of our fundamental moral principles"--which can only mean one thing really in Obama's case--being pro-choice, I am struggling to see what other core principles President Obama, a Christian and deeply religious man, fundamentally is in defiance of in Roman Catholicism.

I'm befuddled as the University of Notre Dame leaders are. I can find no sense in this argument at all.

Summer Johnson, PhD

Caplan: Controlling the Swine Flu Means Looking to Simple, Not Sexy, Lessons from the Past

Arthur Caplan says that we can learn a thing or two about controlling the current swine flu outbreak if we look backward to what worked in the 1918 Spanish flu pandemic. The lessons to learn aren't glamorous or groundbreaking: good ole' hygiene, isolation and common sense are the best protectors to managing a flu outbreak and preventing it from becoming a pandemic.

Want to read more? Go to Caplan's MSNBC column or read the full column below.

Summer Johnson, PhD

Stopping The Flu is Your problem, Too

When faced with the threat of disease, the impulse of most Americans is to think about medical technology and miracle drugs. These are not likely to be much help in the battle against swine flu -- but the history books might.

As history has proven, the best way to halt a deadly virus is to keep infected people away from others. In 1918, an influenza pandemic caused by a strain of flu similar to the one identified in Mexico killed more people than died in all of World War I. Up to 50 million people died worldwide. The greatest number of deaths occurred among young adults between the ages of 15 and 35.

At the time, young American men were being mustered into military camps from all corners of the country to prepare for the war. A few brought to those cramped quarters a new strain of flu. They quickly infected one another at an astonishing rate. As they were ordered to ship out, the epidemic spread along the train lines they used, with the flu jumping into the civilian population at every stop, right up to the harbors and port cities where they departed. Many experts think the flu followed these troops on their convoys into Europe, causing millions more to die.

The Obama administration has developed plans to send National Guard troops from all over the U.S. to the Mexican border to help contain the violence from the bloody drug war raging there. I hope that by now the White House has realized this is a really, really bad idea. Sending the Guard right now to battle drug war lords could accelerate the spread of the swine flu among a high-risk group while giving the virus a free pass to travel all over the United States as the troops rotate home.

The 1918 pandemic offers additional stark lessons. While an effective vaccine may be found against this rare strain of swine flu, it will take many months to produce in large amounts. The best weapons we have right now are not glamorous and have little to do with doctors, drugs and hospitals: They are isolation, hygiene and controlling large gatherings of people.

New Zealand just quarantined a group of students who had flown back from Mexico. We may need to do the same thing.

Americans are not used to giving up individual liberty in the name of the common good. But that attitude is exactly what diseases such as the swine flu virus thrive on.

Heading out to church, the movies, restaurants, subways, supermarkets, day care centers, schools and other places where large numbers of people gather is a recipe for spreading the virus. What if infected people and those who have close contact with them won't stay home? What if people with symptoms slog in to work anyway? Will we intrude on their basic rights and make them stay home? Are we willing to cancel public events and close schools, museums and churches until the infection passes, no matter how loud the protests?

Good hygiene -- washing your hands frequently; wearing a filtering mask; keeping doorknobs and surfaces clean; being careful about sneezing, spitting and coughing -- is helpful in controlling the spread of nearly all infectious diseases, swine flu included.

Each of us needs to take responsibility for stopping the spread of the flu.

What the nation needs is not to send an army to sit in the path of a deadly virus. Instead, we need to prepare for a short period of time when individual rights to go where we want, spend time with who we want and assemble as we want yield to the necessity of protecting the common good.

The Wild West of Nanotechnology

Nanotechnology has been described as many things: the next industrial revolution, the great leveler, an emerging technology, even technology of the Singularity. Yet, I am going to liken the nanotechnology revolution to the American Wild West. Let me explain why a 19th century metaphor is apt and why its actually a good thing for nanotechnology's image, its regulation, or for its progress as we move forward in the 21st century to be likened to the era of gunslingers and cowboys.

(read the rest)

Are the Democrats About to Pull A Fast One? And Is That Really A Bad Thing?

Health care reform may be in the Democrats' grasp--thanks to a little known, at least to the average American, process called "budget reconciliation" that could allow healthcare reform to be passed through the Senate with the Democrats 58 votes because the Republicans won't be able to filibuster it.

According to CNN.com, it's not the most popular idea or maybe even the most ethical one--but if it gets the job done and gives Americans universal access to health care sooner rather than later, maybe it's the loophole that will save millions of American's lives and finally make healthcare a right rather than just a privilege.

They may be pulling a fast one, but I say full steam ahead.

Summer Johnson, PhD

Moooove Over Elsie. We Know Your Entire Genome Now.

The Saint Louis Post Dispatch says that the sequencing of the cow genome is going to lead to more milk and better beef, but all I can say for sure is that it certainly is an interesting step forward in the world of genomics.

Secretly I'm hoping for healthy milkshakes and fatless filet minon!

As the first livestock animal to have its genome sequenced, I'm sure were about to learn a lot more about our barnyard friend. Stay tuned--hopefully for tastier, healthier cheeseburgers...I mean cattle.

Summer Johnson, PhD

A Three-Legged Dog Cannot Run an IRB No Matter How Hard Congress Tries

As if the Coast IRB sting couldn't get more crazy, the company itself has decided to close up shop on the more than 300 clinical trials it was reviewing, according to an AP story, and transfer them to another company.

But the best part of all is that who helped uncover all of Coast IRB's negligence and mistakes was Trooper, to be CEO or maybe even IRB head at Med-Device Systems (the fictitious company created by the House Energy and Commerce Committee), a three-legged dog. Trooper, who has since gone on to his great Doggie Reward in the Sky, was the name of a Capitol Hill staffer's pup.

With other name's on Med-Device's application for "Adhesiablog" like "Phake Medical Devices, April Phuls, Timothy Witless and Alan Ruse" (thanks to the Wall Street Journal for this info) it is shocking that this phony scheme went on as long as it did.

So, if a three-legged dog can run an IRB, what does that say about research review organizations generally? The answer is: we don't know. No one is policing them.

We need a referendum on the state of our human subject review system--both institutionally and for those reviews done externally by contract organizations. For all the fun that we have poked at Coast IRB, it's time for each of us consider the tough question: should these external organizations exist as currently overseen? Are they ready for the proliferation of them as stem cell protocols and other kinds of human subjects research are about to blossom under the Obama administration? Who is going to ensure that scandals like the Coast IRB debacle will not occur again?

Unless greater vigilance of all these organizations is put in place now, many more protocols will fall through the cracks. We can only wish, perhaps that Trooper's ghost will be visited upon them.

Summer Johnson, PhD

Toto, We're Not in Kansas Anymore, or Texas, Or Seattle Grace Hospital, For That Matter

For as much as it might seem okay for as much as it happens in prime time TV medical dramas or daytime soap operas, there doesn't seem to be a medical board out there or the American Medical Association, for that matter, that thinks it's okay for doctors to have a romantic relationship with patients. Even when it's consensual between two adults. Not while there is a physician-patient relationship that is ongoing.

It may be okay to have a round of golf or have a drink with someone at a bar, but if you want to date or have a sexual relationship--that's right out.

But Chris Rangel, MD of RangelMD.com seems to have a problem with this view. He disagrees with the Texas Medical Board's recent decision to fine a doctor $10,000 and to have him do 10 WHOLE hours of ethics education over two years (how ever will he find the time to do that??) after engaging in a romantic relationship with one of his patients. His reason? It's simply too excessive.

If this physician had just terminated his physician-patient relationship prior to having a romantic one, the problem could have been solved, as was pointed out at the New York Times Tara Parker-Pope blog and by Rangel himself. I agree.

You can't control who you fall in love with or even who you want to date, but you can put on the speed breaks long enough to say, "Hey, please find another doctor before we take this any further." Particularly in this case, when the physician in question is a family practitioner, not an orthopedic surgeon or a specialist, but a dime-a-dozen family practice doc. How hard would it have been, one has to ask, for this physician to have given his patient a referral prior to engaging in a sexual relationship with her and avoided entirely this ethical misstep? Had he been the only hematologist in town and she had anemia, the ethical violation would have been of a totally different kind--but in this case, this physician simply didn't bother to ask her to find a different primary care doctor.

Ultimately, he will take his ethics courses and pay his fine and go on with his practice. But hopefully, other physicians will learn from his mistake. Yes, you can fall in love with a patient as they do on primetime TV, but before you take the plunge, give them a referral first.

Summer Johnson, PhD

Medicare: The Ghosts of Christmases Past, Present, and Future

No, I'm not a health policy analyst. Neither is the average American. But neither are we stupid. That's why I resent op-ed columns like the one in the Wall Street Journal that read like this:

"Here's something that has gotten lost in the drive to institute universal health insurance: Health insurance doesn't automatically lead to health care. And with more and more doctors dropping out of one insurance plan or another, especially government plans, there is no guarantee that you will be able to see a physician no matter what coverage you have."

Okay, let me see if I get this logic: If government health insurance is not equal to health care and physicians are dropping out of government health insurance, then by the time we pass universal government health insurance under President Obama there will be no physicians left practicing in government health plans and therefore no health care. Seems logical, right?

Except for one small hiccup....when these "government health plans" are ALL that there is for health care in the entire nation and the only way for physicians to practice medicine in the United States, that would seem to throw a small wrench in the logic. This notion of "Medicare for all" as a way of conceptualizing how universal access to healthcare will work seems to undermine its workability when writers like Mark Seigel from the Wall Street Journal try to characterize universal health care as a broken system from which physicians are fleeing rather than a system into which all physicians could work and all patients receive care.

To talk about universal health care of the future as though it would be the same "Medicare" of the past or the present is to make ridiculous assumptions that presumes that the reader of such an editorial is simply not paying attention.

Summer Johnson, PhD

Powers' Chicken and The Egg Problem

Madison Powers' eloquent essay from CQPolitics.com last Friday analyzes Obama's two-fold problem passing healthcare reform.

What Powers calls "decoupling" the two key arguments about cost containment and expanding access to healthcare, I call his "chicken and the egg problem". You say potato, I say potato.

Fundamentally we agree: if you siphon off issues of cost away from issues of access to care you will never resolve the problem. If you wait for the economy to improve such that it would be easier to afford an overhauled health system, the political capital that Obama has built will be eroded. Keeping all the cats herded will not be possible for very long, certainly not for as long as it will take for the economy to improve as much as it needs to. Convincing all the major insurance companies to stay in league with each other is hard enough.

Even if one of the two of these were possible, it might be enough to keep the coalition together--but only for a short while. Healthcare reform simply cannot wait for either side of the equation to be entirely satisfied. Economic indicators will not improve dramatically in time nor will every stakeholder be aligned. But we all will have to take that leap of faith, or we will all drown together under the weight of our sinking healthcare ship.

Summer Johnson, PhD

All in the Family

What to do when you are the doctor, NP or other kind of health care provider and your relative comes to you and asks for a diagnosis, prescription or other kinds of care? Should you treat them or turn them away?

Last week, American Medical News grappled with this thorny ethics question.

According to a 1991 study, nearly every physician (99%) had been asked by a family member for medical advice, diagnosis or treatment. But just because you are asked, doesn't mean you should. 83% had prescribed meds, 80% had provided diagnoses, 72% had done physical exams, 15% had been a family member's PCP, and 9% had performed surgery on a family member.

22% had done something which had made them feel uncomfortable.

So why do so many doctors cross these familial boundary lines? Duty, responsibility, loyalty, a desire to help a loved one. All good reasons in my book. And is there really something wrong with doctors practicing on family members? In my view, if a doctor keeps a chart on their "patient" and is practicing within their area of expertise, I don't see anything wrong with it.

It's when "Auntie Nurse" or "Daddy Doctor" starts prescribing or diagnosing outside their area of expertise that I would start to worry. Or when a doctor themselves says they fall into that 22% of people that feels that they did something that made them uncomfortable. That's when treating family becomes problematic.

Otherwise, I don't see how providing medical care to family is any different than getting your car repaired by your uncle or your taxes done by your nephew. Professional services of all kinds are done by relative all the time. We keep all kinds of things "all in the family" all of the time. I see no reason to treat medicine with any kind of exceptionalism as long as doctors and family members know where the boundaries are in as much as we do with accountants, lawyers and any other professionals.

Summer Johnson, PhD

GAO Says "Gotcha!" to Coast IRB

Who knew that GAO was so crafty? Evidently not Coast IRB, for one. Well, maybe it's not quite SO crafty, but GAO was able to get the IRB to fall for a fake clinical trial that showed that the review board for hire was asleep at the wheel when it came time to review the phony study.

To read more about this, go to the Wall Street Journal Health Blog.

Summer Johnson, PhD

What's It Like to Be a Middle Aged Guinea Pig?

If you want to know, read the L.A. Times Booster Shots post which recounts Rosie Mestel's recent experience volunteering for a cancer epidemiology study.

A first hand account of what it's like to be interviewed by a health services researcher, this blogger goes from being a bit reticent about giving answers to somewhat invasive questions to being gung-ho about talking about medical history and health behaviors. As she explains,

"Finally, by the end of the interview I wanted to tell her stuff. This was my moment! My moment in the spotlight! Maybe me, my genealogy and my wastrel ways held the ovarian cancer clue! Did she want to know about my missing kidney? Or my older brother's childhood episode of idiopathic thrombocytopenic purpura?"

Perhaps atypical, idiosyncratic, or just one person's point of view, it made me pause to think about the human subjects I've interviewed and how this process effects them during and after the research study is over.

Summer Johnson, PhD

Racing For a Cure--And Taking Genetic Samples at the Same Time?

As a woman and a supporter of research of all kinds, I still have a hard time swallowing this request: "You are healthy. You feel great. Can you help us out by participating in a research study where we will biopsy your breast and take out healthy tissue for our cancer genetics database?"

To create a database out of tissues of women at risk for breast cancer is one thing, but to ask completely healthy women to give is another. But this is precisely what the Indiana University's Susan G. Komen for the Cure Tissue Bank at IU Simon Cancer Center is asking women to do, says the Indianapolis Star.

The database has collected tissue samples from over 450 women and blood samples from more than 4,500, says the Star, and is the world's only repository of healthy breast tissue.

What would motivate hundreds of healthy women to undergo breast biopsies for research from which they will derive no benefit whatsoever? How did the database get so many volunteers to donate breast tissue and blood so fast. Volunteers for the study, and even blood samples, were collected at the annual Komen Race for the Cure.

But do these women, clearly motivated by the desire to help those with breast cancer and/or genetics research, understand how their samples will be used? Are they paying attention to the informed consent process or are they more likely to be the kind of women who would do anything to advance breast cancer research and the search for a cure?

Of course, it is impossible to know what motivates any healthy volunteer to participate in research unless you ask them, but the potential for inadequate informed consent here is not small. Blood draws are innocuous enough--but collecting them at the race? Then asking people to volunteer to undergo a breast biopsy to collect tissue samples? Moreover, I would guess that a significant number of volunteers have a first-degree relative with breast cancer, motivating them to do whatever it takes to find a cure--particularly on a day like the Race for the Cure.

Even though the researchers seem to have taken the ethical considerations about informed consent for donating samples to a genetic database into account (according to the Star the PI of the study "consulted with experts at IU's Bioethics Center, where she got help crafting a paragraph for the consent form"), it would seem that her recruitment methods did not get the same scrutiny. The database would seem to have tremendous value for breast cancer research, but it is essential that those donating to it understand what they are doing and simply not be motivated by the breast cancer advocacy community or the energy of a day like the Race for the Cure.

Summer Johnson, PhD

When Donor Sperm Goes Bad...

A federal court has ruled that a sperm bank can be held responsible for a poor genetic outcome as a result of conceiving a child with donor sperm, reports the WSJ Health Blog.

In this case, the mother, Donna Donovan, of a 13-year-old girl with Fragile X syndrome, Brittany Donovan, is suing the sperm bank from which half of her genetic material came--blaming them for her genetic condition. The sperm bank, however, located in New York, maintains that donor G738 was screened for all genetic conditions and that the sample was stored appropriately and that there was no breach in either safety or health protocols or the contract between Ms. Donovan and the bank. However, genetic tests, tests which were also available at the time that the sperm was collected and given to to Ms. Donovan in 1995, revealed that donor G738 was a Fragile X carrier while Ms. Donovan was not.

Ultimately, the ruling by the Federal court came down to conclusions about breach of contract and liability on the part of the sperm bank--but what is more interesting is the precedent this could potentially set for others seeking remedies for promises made and left unfulfilled from donor sperm.

Does a finding such as this open the door to lawsuits about other potentially genetic conditions such as autism? Will mothers of children from donated sperm be able to go back to test sperm samples and say, not only that a gene is present, but as Ms. Donovan did--that the sperm bank should have noticed certain physiological characteristics in the donor that suggested he was a carrier for Fragile X, autism, or other genetic conditions?

While it is certainly possible, it seems to me that the standards for harm and for proof connecting donor sperm to a particular health condition of said offspring was pretty high in this case--which was very cut and dried due to the particular genetic condition at play. I think that future lawsuits will happen, but it will be a very difficult argument to make to say that sperm banks are liable for other multifactoral, potentially environmentally influenced, or otherwise more complicated genetic conditions.

Summer Johnson, PhD

To Bank or Not to Bank? For Cord Blood, The Answer is No.

Much ado has been made over private cord blood banking when a baby is born for its potential someday to maybe save a child's life. New research suggests, however, that the likelihood of that eventuality coming to pass is incredibly small.

According to WaPo the study published last month in the journal Pediatrics, 93 pediatric transplant specialists were surveyed to find out how many had used banked cord blood. The answer? Very very few. Just 50 had used banked blood and just 9 had done autologous transplants (giving blood back to the donor). Other cases involved giving the blood to siblings or other relatives.

The interesting finding, however, which should not be glossed over is that in 36 of the 41 cases where banked cord blood was used to treat a sibling or relative, the potential need for a cord blood transplant was known by the parents prior to banking. In other words, parents banked the blood because they had a pretty good idea that their sick child would need the blood someday.

It is hard to argue that in those cases, where there is a sick elder sibling or sick child themselves, for example, that cord blood banking wouldn't make sense--presuming adequate informed consent, sufficient ability of the parents to pay, disclosure of the facility's conflicts of interest, if any, etc.

It is the cases where cord blood banking is promoted as GENERALLY a good idea for families where there is no family history of pediatric illness as simply an insurance policy against the remote risk that their child will get sick that banking seems wasteful in terms of both financial resources and emotional and psychological energy on the part of new parents who must decide whether or not to bank their child's blood.

Of course, as treatments using cord blood become more and more effective, this calculus may change, but at present, asking parents to pay upwards of $1500 per child to bank cord blood they are incredibly unlikely to ever use seems to only be preying on the fears of new parents that their apparently "perfect baby" will someday get sick. Given the data from this Pediatrics study, cord blood banking isn't worth the multiple costs involved absent foreknowledge of disease or actual illness in the family.

Summer Johnson, PhD

An Inconvenient Boost

First it was climate change, now it's iPS cells. Al Gore loves to have a pet scientific cause to put his (sometimes fluctuating) weight behind--and the scientific trend of the moment, it would appear is stem cell research. But not, surprisingly, embryonic stem cell research. Gore is part of a $20M venture backing research into induced pluripotent stem cells where he is partner of a venture capital firm, Kleiner Perkins Caufield and Byers, reports USA Today.

But is Gore's backing for iPS cells good for stem cell research really? I think not. A former Vice President doing what appears to be stumping for iPS cells detracts from the significant advances that embryonic stem cell research can yield. Even if the research appears promising, it sends a very clear message that at least one prominent science policy leader is backing another horse--and right after President Obama's funding of embryonic stem cell research. At the very least it sends very mixed messages about where research priorities in the US should be placed where stem cell research is concerned.

Summer Johnson, PhD

Abraham Lincoln: the Brains to be a Book Agent

Lincoln had cancer and he was about to die, right before the bullet got him first. Or at least I think so. I'm a cardiologist who doesn't work on cancer research. So let's run his DNA and find out. This is the case that John Sotos has put before the little room of folks who apparently decide how to allocate the bits of Abraham Lincoln's brain matter and blood that was left on a pillowcase, a pillowcase that made its way to Philadelphia. This is the subject of a really bizarre article about Lincoln in the Philadelphia Inquirer.

The whole case would make a great episode of House; it has the all-too-curious researcher who is simply unconcerned about the degree to which Americans - not just Lincoln's family - believe in the sanctity of the dead bodies of our forefathers and other beloved elders. When it is allowed there is a good reason, typically: most Americans believe that Lincoln was already exhumed to prove that he had Marfan syndrome, which he wasn't. And most disapprove of it, even though it didn't happen. In this case, a man who has written a book whose strongest review is that it was one of the 8 best books about Lincoln, which purports to explain everything from his headaches to why he would have died within a year even if he hadn't been shot, has said lincoln had a rare form of cancer. No, this is not a cancer researcher and no there is no reason to believe that knowing whether or not lincoln had this cancer would advance anything about diagnosis or treatment of multiple endocre neoplasia type 2B.

Lincoln has already been put through every kind of People Magazine investigation in the past 200 years, and 140 years ago as of the date of your show we note that he didn't die the happiest death in the first place. The man who stopped the civil war didn't die because he had cancer or marfan syndrome. So there needs to be a better reason than proving the theory in last year's "8th best book about president lincoln" before we turn him, one more time, into a disease rather than a president.

Ethically, it is obviously wrong. Not because we shouldn't look at dead people or learn from them: cadavers teach medical students, Lenin is under glass at london school of economics, and bits of the DNA solve crimes so often that CBS could probably get away with a CSI show based in Boise Idaho. The problem isn't the family's permission, either. When you get this many generations out, the family's role in dictating the fate of remains of a dead president really don't trump much. The problem is that Lincoln is not in fact doing a service for anyone here, apart from Dr. John Sotos, a cardiologist who actually writes for House, and his publisher.

- Glenn McGee

The Dallas Morning News Agrees With Me

It would appear that I am not the only one who thinks that Marissa Evans, Nikolas Colton Evans' mother, should not have been able to harvest her son's sperm to ensure that she can have a grandchild.

Friday's Editorial from the Dallas Morning News also agrees that it is crossing an ethical line, and although it doesn't exactly express which one it is, at least its good to know there are some people out there in my camp.

Summer Johnson, PhD

Deep in the Heart of Texas: A Bar Fight, A Mother's Wish, and Posthumous Sperm Donation

Really, this isn't an SNL skit, I promise.

A woman's 21-year-old son dies in a Texas bar fight. The bereaved mom wants the son's clearly virile and tenacious genes to live on in the next generation and fights to have his sperm collected and stored so that someone may carry his seed. She says, on the one hand, that it was always his wish to have children and wants his wishes to be carried out. When the physicians refuse, mother Evans goes to the judge to get her son's sperm out of his body and into a surrogate. She wants someone to carry her grandbaby. Now!

It has been reported today in Live Science, that a judge has ruled that the mama's wishes (and purportedly son's) have carried the day.

Harvesting sperm from dead donor's is nothing new to the bioethics debate, of course, and questions about in whose interest it is done and how clearly preferences are articulated is well-trod ground. It's simply the imagery of the son killed in a Texas bar fight and the impassioned mother who wants her son's genes to live on that gives this story so much color. Moreover, it seems much clearer, from the story in the Austin American-Statesman, that this case is much more one of the mother's preferences to "keep a piece of him" with her, as she was even quoted as saying in the Texas newspaper as saying. "I want him to live on," Mrs. Evans said.

So how far will we go to in the posthumous collecting of sperm to satisfy the emotional and psychological needs of family members? Not to mention what a surrogate would be asked to go through and the future child, effectively a replacement for a lost son.

The Texas courts have erred here in a serious way. They have acceded to the wishes of a grieving mother in tremendous pain and sorrow. My soap opera characterization above notwithstanding Nikolas Colton Evans' death was a tragedy, but it does not justify harvesting his sperm so that his mother can create a replacement child and mislabel it as her son's wishes to have his own children some day or her own wishes to be a grandparent.

Nikolas Colton Evans' life was cut tragically short in a bar fight and he will never get to exercise his own reproductive choices in life. This does not mean his mother gets to exercise those choices for him after his death.

When You Can't Get a PDR, Grab an iPhone!

One in ten doctors recommends...an iPhone! Yes, you heard that right. One in ten doctors agrees that the iPhone is a good health tool. For what? The PDR. Recommending drugs. Or at least preventing drug interactions. Or both.

Read it here from the WSJ:

"When Apple first started promoting applications for the iPhone, CEO Steve Jobs touted physician reference guides and other medical programs as an important category of software for the device. At least a tenth of the doctors in the U.S. concur with that view."

Wait there's more: 75,000 doctors have installed some version of the iPhone app, Epocrates on their phone, an application that allows you to look for drug interactions and more. And this doesn't even include medical students, nurses or other health professionals.

Who knew the iPhone could be so handy? Well, Steve Jobs, for one. And it turns out a good-sized portion of the medical community as well. But why if they will use the iPhone as a PDR will they not use the other medical devices in the hospital to prevent drug interactions? Or is it just this tech-savvy 10% that are the early adopters of this technology?

My guess is that it is the latter, and they will have to drag along the rest of their colleagues kicking and screaming. Maybe they will have to convince them that it would be cool to get an iPhone.

Summer Johnson, PhD

Are You in the Majority?

CBS News is reporting the results of a CBS News/New York Times poll that says that the majority of Americans (57% of them, still not a resounding majority, mind you) would be willing to pay higher taxes for universal health care. My goodness! That almost sounds....European! Or even worse....socialist!

How could Americans be so vulgar? Maybe they are just desperate. After seeing what happens when a health care system based on free market principles actually fails because it really isn't a free market. And when health insurance is based on employment and unemployment rises to 8.5%, perhaps even somewhat slow-to-adapt Americans get the idea that employment-based health insurance isn't such a good idea.

If you are still holding out that state-sponsored healthcare isn't such a good idea, maybe it's time to reconsider. Being in the majority may be a good thing, just this once.

Summer Johnson, PhD

China Gets It...Why Doesn't The US?

The Wall Street Journal reports today that China is aiming to improve its health care infrastructure, to expand health insurance for all, and is starting a "decade-long plan to repair an ailing health-care system that has fueled popular discontent."

Gee whiz...what a novel idea. Health care reform as a way of appealing to the masses. Acknowledging that it will take years to reform a broken health system. Working on hospitals, clinics, and the health insurance system at the same time.

If China can do it with a billion people, why can't we?

Summer Johnson, PhD

WWJE? What Would Jesus Exchange? Evidently, Needles.

In one of the more creative arguments I've seen in a while, William Martin, the Harry and Hazel Chavanne Senior Fellow in Religion and Public Policy at the James A. Baker III Institute at Rice University, argues that needle exchange programs are what Jesus would have advocated for, had they been around in Biblical times.

In an op-ed in the Houston Chronicle, Professor Martin acknowledges that Jesus had nothing to say about needles, but that he looked out for the downtrodden and outcasts in society, which in modern times certainly could include drug addicts, IV drug users, and those who are afflicted with diseases spread by sharing needles. He goes on to argue: 'Needle-exchange programs save money, demonstrate compassion, preserve lives, and offer a helping hand to people in desperate need. These are criteria for public policy that thoughtful religious people can support with a clear conscience."

It's an almost bizarre argument, but oddly, one that I don't think is wrong. Perhaps social Conservatives, and Christians more broadly, should take another look at their own teachings and consider whether Professor Martin has a point and whether there is room for needle exchange in their world view. It could have a huge impact on public health and public policy.

Summer Johnson, PhD

No Clones for Montana

Just in case you were worried you were going to encounter some human clones out there in the wide open spaces of Montana have no fear. According to media outlets there, last Wednesday the governor signed into law legislation that bans the creation of human clones, but does not prohibit stem cell research, just "embryonic stem cell research with cells of a cloned origin".

Pfew. I was really worried about that. Weren't you?

Summer Johnson, PhD

Who Knew It Took So Many Words To Tap Dance?

US News and World Report's "God and Country" blogger Dan Gilgoff published an interview between Doug Kmiec and Robert George who discussed a range of bioethics topics including when life begins, the moral status of the embryo and more.

Gilgoff described it like this: "Grab a beverage and get comfortable. George's answers are by no means brief. But they present the antiabortion case in eloquent, often philosophical terms that draw deeply on modern science." For some of these explanations, Tolstoy could have been more brief. Then again, when you have to hold positions this convoluted perhaps you could understand why the arguments have to become as complicated as George's do.

(Read George's own answer to his self-imposed question "Does the life of a human being begin at implantation? to see what I mean.)

Summer Johnson, PhD

Can You Ever Be Too Cautious with Cannibalism?

Alisa Harris of Patrol Magazine is worried that liberals are giving living organ donors a hard time. After all, in her blog post entitled "A Noble Form of Cannibalism", a phrase borrowed from Leon Kass' scholarship on organ donation, Harris starts out criticizing the medical establishment (and implicitly the bioethicists who shape the organ donation policy within it) who support such draconian policies as "donors have to cover their own medical expenses* for the donation and then insurance provides nothing later for long-term comprehensive health insurance or life and disability insurance."

She goes on to slam the medical community for being "overly cautious because of the possibility of bribes or rewards for living organ donation." I mean, what's wrong with buying someone's liver or kidney? She goes on to quote another columnist, Frances Kissling of Salon: "Even without incentives, no group of do-gooders is treated with more suspicion by the medical community."

But wait, I have to go back to this whole "cannibalism" metaphor Harris (and Kass) have used. The entire idea that living organ donation is likened to cannibalism does carry moral weight--as most metaphors do. If living organ donation is as serious an act to be likened to something like cannibalism, then ought it not be viewed with caution, given serious legal and ethical protection, both to the donor and recipient? Of course, living organ donation is NOT cannibalism--it is legal and morally accepted in our society--but to the extent that it presents risks to the donor and is literally the taking of one person's flesh by another persons that act must be respected and protected.

Harris doesn't really say enough to be critical of in either direction, either about Christian notions of organ donation or transplantation, or about either Leon Kass or Gil Meilaender (her favorite bioethicist, she says). But before you slam the medical community or non-Christians, or implicitly bioethicists or those more liberal than you for putting protections in place for those who want to be living donors, think about your chosen metaphors and ask yourself if there isn't more than just moral complexity or thorny questions, but real harms out there from which these policies are protecting actual people from.

Summer Johnson, PhD

Watch Out Californians--Odds Are Good You May Be Without Health Insurance in the Next Two Years

A recent study has found that 37% of Californians have been uninsured for at least one month for some point in the last two years, reports the LA Times. The study done by Families USA also concluded that most of the uninsured population lacked coverage for longer periods and "more than 80% of them were working families", who presumably couldn't afford the premiums on Medical and did not have access to employer based health insurance.

Could there be a better argument for healthcare reform? When almost 40% of a single state's working population cannot get access to healthcare, something is seriously wrong with that system. We cannot fix it fast enough.

Summer Johnson, PhD

First Cleveland Clinic, Then Penn, Now Stanford...

As we reported on our blog a few weeks ago, it wouldn't be long before many medical institutions were jumping on the conflict of interest bandwagon. As the Wall Street Journal Health Blog has reported, Stanford University Medical School is now publicly identifying its physicians and faculty for any industry money they receive over the amount of $5000.

Welcome to the club, Stanford!

Summer Johnson, PhD

What Will Bioethics Be Like in 2029?

On the Journal of Medical Ethics blog, Soren Holm has said, "If you know what is going to happen in bioethics in the future here is the competition for you...." How is that for throwing down the gauntlet?

Evidently the Swiss Society for Biomedical Ethics, to celebrate its 20th anniversary, is having a competition asking essayists to conjure up scenarios for the future of bioethics in twenty years. Can anyone really imagine the kinds of issues we will be trying to grapple with in 2029? It sure sounds fun to try.

Hint: I'll write a post later, linking back to this one, where I'll answer this very question. So stay tuned...

To learn more about the details of the competition, read Soren's post or visit the SSBE website for more information.

Happy Writing!

Summer Johnson, PhD