A top-level commission has just released a new report on the morality of studying the safety of an anthrax vaccine in children, with an eye toward treating kids in the event of a terror attack.

The report, issued Tuesday by the Presidential Commission for the Study of Bioethical Issues, is quite thoughtful. It concludes that no testing should be considered unless the risk to kids is minimal. But it also represents a study of an experiment that has no chance of happening -- ever. The commission has wasted its time. There is not a chance that a sufficient number of American parents are going to sign up their kids for the safety testing of an anthrax antidote.

The reasons for asking the question are sound enough: In 2011, the U.S. government conducted a bioterrorism preparedness exercise to study the likely results of a large-scale release of weaponized anthrax spores in a major city Officials estimated nearly 8 million citizens would be affected, nearly a quarter of them children.

If such a terror attack happened, current federal plans call for immediate distribution of antibiotics and a follow-up widespread vaccination program using anthrax vaccine adsorbed or AVA. Vaccination is necessary because anthrax spores would likely pose a threat long after their initial release.

The vaccine has been administered to more than a million adults in the military. The problem, of course, is that no one knows what effect anthrax vaccine might have in children. Some have been in favor of testing the vaccine on children, arguing that it’s better to know the effects than not to know.

The National Biodefense Science Board -- a group of scientists and doctors who advise the feds -- recommended that the government conduct a study to test the safety and effectiveness of anthrax vaccine with children in case an attack occurs, contingent upon ethical review. The new review calls for strictly limiting pediatric anthrax research risk in any study to a minimum.

That sounds reasonable until you think about what a study actually involves. Anthrax vaccination requires five -- count ‘em -- five shots. According to a safety review completed a year ago by the Military Vaccine, or MILVAX, Agency of the US Army Medical Command, 30 percent of men and 60 percent of women in the military who were vaccinated experienced a wide range of minor side effects, including soreness, redness, itching, swelling and or lumps at the injection site, plus ailments like rashes, headaches and joint and muscle aches. There were no deaths or serious long-term harms found.  

As medical interventions go anthrax vaccine is very safe. But it’s one thing if you’re a soldier heading somewhere where bad guys might lob an anthrax-loaded shell your way. In that case, a little itching, swelling and joint soreness would hardly matter.
If it’s your kid, it’s another thing. And if your kid has asthma, allergies, depression, cystic fibrosis or cancer, the risks seem even greater. The whole notion of a trial in children of anthrax vaccine is, quite simply, ludicrous.

Nor should parents want to sign their kids up.  Of all the real challenges that children face -- think abuse, neglect, obesity, suicide -- exposure to anthrax is pretty far down the list.  Calling for this study on kids is to put a remote, tiny risk ahead of a dozen other dismal and all-to-real life-threatening dangers. It is to terrorize kids and parents with a terrorist threat that is remote at best.

The commission sees a small ethical opening through which a study might pass.  I see parents taking one look at any effort to recruit their kids to a safety study of anthrax vaccine and moving on to worry about what their children are eating, who might be bullying them, and whether they drink and drive.  Sometimes you don’t need an ethical review to tell you what is gonna happen.

Arthur Caplan is the head of the Division of Medical Ethics at NYU Langone Medical Center.

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Would you eat horsemeat?  A lot of people would not. Should you have the right to know if the meat you are eating contains horsemeat?  The answer to that question is a resounding yes – and that’s why the current scandal in Europe over horsemeat reveals a lot about the push to get better labels on the food we eat.

If you don’t want to eat horse – why? What is the problem?  If you eat meat, then why not horse? After all, many people around the world do eat it. Horse is on the menu or in the kitchen in many nations including Kazakhstan, Indonesia, Japan, South Korea, Mongolia, Tonga, Iceland, Germany, Sweden and Holland. So whatever you think about eating horse, it isn’t safety that makes you disgusted at the very idea. 

Still, Europe is in the midst of a huge scandal involving horsemeat showing up in a lot of the wrong places. Testing has revealed that much of what has been sold as beef or pork in restaurants, schools and hospitals as well as in frozen meat products in grocery stores such as lasagna contains horsemeat.  Even the furniture giant Ikea had traces of horsemeat found in the meatballs they were selling in their restaurant stores in some parts of Europe.

Why is the discovery of horse meat in food such a big deal?  What is so troubling to Europeans that there have been protests and outrage against food companies in many nations where mislabeled meat has been found?  To understand the furor generated by consumers finding out there is horse in there you need to look elsewhere.  The South Philadelphia restaurant Monsu provides a clue.

The head chef of BYOB Monsu announced last week that the restaurant's menu would soon include some selections of the equine variety. But the day after announcing horse was going on the menu, the restaurant received a serious threat. “They called into the restaurant and said, ‘You guys start cooking horses, I am going to blow up your restaurant,’” Andrews said to NBC10.com.  Clearly, some folks feel very strongly that horses belong in a paddock, not a plate.

Food is much more than safety, and it is much more than nutrition – we see this  when we get into fights about labeling genetically modified food, or requiring that meat from cloned animals be clearly marked or that organic food really be organic to merit the description the European scandal over horse meat.  Food is culture.  Food is family.  Food, in short, is values.

Those who get into fights about labeling food thinking it is just an issue of safety never tried to put horse on the menu in South Philadelphia or deal with an outraged customer in England whose beef stew was more than that.  The ethical and policy lesson for regulators, industry and farmers of putting horse meat where it is not supposed to be is very simple--when it comes to food we should be able to find out anything and everything we want to know about what we eat.  To do otherwise is to deny informed choice about a subject -- food -- that is too complicated to permit any other standard.

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The quest for relief from pain has now resulted in the deaths of 19 people and a total of 247 confirmed infections of fungal meningitis from tainted steroid injections. Thousands more who got the injections, made by the New England Compounding Center in Massachusetts, are worried that they too may wind up sick or dead. 

The horrific outbreak has resulted in the outrage about a lack of oversight of the compounding pharmacy.

But, this tragedy has another aspect that is not getting sufficient attention. Why are so many Americans getting spinal injections?

Most people in the United States will experience low back pain at least once during their lives. Back pain is one of the most common reasons people go to the doctor or miss work. It has also spawned a lucrative industry of spinal injection treatments whose efficacy, safety and long-term utility are mixed.

Epidural steroid injections are a common treatment for many forms of low back pain such as bulging discs, sciatica and leg pain. Experts agree that injections should be a last resort after patients in pain have tried anti-inflammatory medications and physical therapy. Millions of Americans get shots but far too many as a first attempt at relief, rather than a last resort.

The use of spinal injections, which have been around for 50 years, has been growing rapidly with one study reporting a 629 percent increase in Medicare expenditures for epidural steroid injections over the last decade.

Back pain injections can cost as much as $600 per shot. Insurance will pay much of the cost and there are often a lot of shots given. Sadly, there are lots of programs all over America that advise you on the Internet and in newspaper ads to come in and get a shot for back pain before trying anything else – that’s just lousy medicine.

Do the shots work? Many patients who get them say they do. But  the evidence is not convincing that people do better with shots than pain relievers and anti-inflammatory drugs. One recent, blinded study, published in the British Medical Journal, showed that patients reported as much pain relief with saline placebo shots as those who got epidural steroid injections.

Another study, published in 2007 in the medical journal Spine, showed that shots are most useful for people with herniated disks and pain radiating into their legs or arms but fewer than half of the injections given are for these conditions.

The explosion in back pain injection treatment closely parallels the explosion of obesity in the United States. Not surprisingly, the treatments that have the best evidence of helping relieve back pain are losing weight, exercising more and maintaining better posture. We are becoming a society that relies on symptom relief for health issues, not fixing the underlying problem.

No one should have to fear getting a fungus that might kill them when they go to get treatment for their back pain. Our legislators and regulators have let us down when it comes to keeping an eye on mom and pop drug makers. But, too many of us are using spinal injections as the first response to back pain. And too many doctors and clinics are pushing that treatment as an easy fix. Nothing is easy when it comes to pain. Medicine needs to stop promoting quick and very lucrative fixes for back pain when for a lot of people who suffer an alteration in lifestyle should be what the doctor orders.

Arthur Caplan is the head of the Division of Medical Ethics at NYU Langone Medical Center.

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Can you trust what biomedical researchers have to say about your health?

There are plenty of people out there who say no, including anti-vaccinators, mega vitamin proponents, lovers of non-Western medicine and those who see a pharmaceutical company plot behind every drug, device or genetically altered seed. Few of these skeptics have any sound evidence to offer on behalf of their distrust. Often their opposition is based more on ideology or politics than it is solid evidence for doubt.

But, that does not mean that biomedical science should ignore problems that do undermine public trust in what they have to say. One of the most important and disturbing is fraud. 

A study published Monday in the very trustworthy journal Proceedings of the National Academy of Sciences shows that fraud is a real problem in scientific publications.  This study is both a reason for concern and, ironically, a reason to trust what scientists and doctors say.

The study reviewed 2,047 retracted biomedical and life-science research articles dating back to 1973 and found that the biggest reason for their retraction wasn't honest error but fraud.  More than 40 percent of the retractions were due to the discovery of outright fraud and another 23 percent to plagiarism. The rate of retractions of published articles, while a tiny percentage of all papers published in biomedical journals — 2,000 out of tens of millions published in the past four decades -- is growing. The rate has jumped 10 fold in the past 37 years.   

It’s an unsettling trend. A teeny number of fraudulent articles can do an enormous amount of harm. Prominent cases of fraud certainly and rightly make the public wonder about the credibility of biomedical claims. Why, however, does this study and its findings have a silver lining?

Let me ask you a simple question: When is the last time you heard critics of vaccines or GMO food admit that there is fraud on their side? In my experience, the answer is never. Those who tout the benefits of chelation, megavitamins or cleansing enemas never confess to any degree of fraud among their number. Strange as it may seem, what makes mainstream biomedicine trustworthy is its willingness to admit that there are frauds and charlatans out there and that efforts need to be made to catch them.

Real trustworthy science knows that error happens, that sometimes the error is malicious, that there are bad apples out there and that you have to try and weed error out.  If you are not ready to admit these truths then you are not trustworthy at all.

That said why is fraud on the rise?  The study authors are not sure. 

I suspect the increasingly competitive nature of science, the drive to secure more grants, patents and equity by individual scientists and the huge proliferation of journals that are not doing a good job peer-reviewing articles are all to blame.  So are scientists who have agendas. 

The biggest fraud mentioned in the study is Dr. Andrew Wakefield. Wakefield is no friend of vaccination. His bogus paper reporting a link between autism and vaccines had a huge and devastating impact on the health and well-being of babies and kids all over the world. Even though it was retracted and he was discredited, many still continue to believe he was right.  

Biomedicine needs to do more to stop the growing trend of fraud.  More education of young researchers, tougher penalties for fraud, and increased resources and rewards for peer reviewing will help. The fact that biomedicine is willing to look hard and publicly at its “bad apples” shows that there is every reason to think that scientists and doctors ought to continue to be trusted.

Arthur Caplan is the head of the Division of Medical Ethics at NYU Langone Medical Center.

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Should a physician be held responsible if an elderly patient causes a car accident while driving?

A Los Angeles jury recently decided that Dr. Arthur Daigneault was not responsible for the wrongful death of 90-year-old William Powers, whose longtime partner, a dementia patient, drove into the path of an oncoming car, according to a report by The Los Angeles Times. The driver Lorraine Sullivan, 85, survived, but Powers died of his injuries weeks after the crash.

The Orange County, Calif. jury cleared Daigneault, but the case raises the question of whether the physician should have reported his patient -- who had suffered memory loss since 2007 and was prescribed an Alzheimer’s drug in 2009 -- to local health authorities or urged the California Department of Motor Vehicles revoke her license.

The victim’s family thought Daigneault should have done something. They sued him for wrongful death, arguing that he should have deemed the driver, a danger on the road and gotten her driver’s license yanked.

Daigneault, who had been involved in taking away driver's licenses from other patients he had seen, said that he did not think Sullivan’s condition was severe enough to warrant doing so in her case. The jury, after 30 minutes of deliberation, agreed.

Daigneault could well have been right in not reporting Sullivan. Every day there are horrible accidents that involve wrong turns, driving the wrong way and other fatal errors by drivers of all ages. But, statistics show that older drivers are more likely than younger ones to be involved in multi-vehicle crashes, particularly when turning at intersections, as Sullivan did. Drivers ages 80 and older have the 2^nd highest fatal accident rate of any age group. Only teenage drivers are more dangerous, according to Federal Highway Administration data. 

In the next 20 years, the number of elderly drivers in the United States will triple.

Should every state require doctors to report their concerns about the ability of older drivers to safely be on the road? Only a few states, including California, require or encourage doctor reporting.  Relatively few require a road test for drivers over 75. Most states do not even require a vision test for older drivers. Tennessee does not require drivers over 65 to even renew their licenses.

Defenders of the elderly’s right to drive note that there are plenty of other people out on the roads who pose huge dangers.  Reckless teenagers, novice drivers, drunks and the distracted driver contribute a great deal to the more than 90 people killed on American highways every day. The very old are, however, the biggest and fastest growing risk. And they are the ones that should be the easiest to get off the road.

States need to take this problem far more seriously and toughen their reporting laws. Doctors should put privacy on the back burner and err on the side of reporting to state motor vehicle departments when they have concerns about a demented or impaired older patient who is still driving.  So should you if you are worried about grandma or grandpa. Even if your older family member does not go to a doctor, if you think their vision is failing or their memory is badly slipping, then the right thing to do is to let officials know.

Driving is a treasured right in America. But when age takes a toll on driving skills, putting the elderly, their passengers and others on the road at grave risk, then medical providers,family and loved ones should speak up loudly -- before that next wrong turn is someone's last.

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Despite the great demand, very few Americans donate their organs when they die. But the reason for that may not be what you’d think -- it’s your relatives.

That’s what David Shaw, honorary lecturer at the University of Aberdeen in Scotland, thinks the real problem is. In an article published Tuesday in the British Medical Journal, he writes that one of the biggest reasons more people don’t wind up donating is veto by their family.

Even when you have signed a donor card or checked off your driver’s license a family member can still object to your being an organ donor.  And some do -- at least 10 percent of the time or more, says Shaw. (That number may be even higher, according to other U.S. researchers.) Shaw says doctors ought to forget cousin Fred’s second-guessing or your sister’s distaste for donation  and ought to honor your written wishes and use you as a donor.

Interestingly enough, that’s actually the law in the U.S. In nearly every state, a signed driver’s license or organ donor card is fully adequate for allowing donation no matter what your brother-in-law or other family member thinks. But despite that, doctors are still swayed by the family’s wishes.

Shaw is up against some tough problems when he urges doctors to ignore family protests. Is it really realistic for organ and tissue procurement to proceed no matter how upset family members might be about it?

And even if doctors are willing to plow ahead no matter what kind of emotional chaos is occurring in the next room, which hospital wants to risk a headline that says, “Liver removed while widow wails; Doc says ‘But I had a signed driver’s license’”?

Shaw is right to urge doctors not to give up at the first sign of family discomfort. When you sign a card or your driver’s license, you should expect that you will be able to be a donor.

I would argue, however, that the problem with family objections is not fearful doctors backing down in the face of distressed or divided families. The problem is what you and I often fail to do when we sign those cards and licenses — tell others!

If you sign your driver’s license at motor vehicles it is not likely that the friendly employee you waited an hour to see is going to be there when you die. Your family and friends will be. You need to tell them while you are alive that you want to be an organ and tissue donor. That is the antidote for avoiding an outbreak of objections when your number is up and being a donor is the last way you can help those in need. If you make it clear while alive what your wishes are that is the most important step you can take to having them honored when you are not.

Arthur Caplan is the head of the Division of Medical Ethics at NYU Langone Medical Center.

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The decision by the Supreme Court to uphold the constitutionality of nearly all of President Barack Obama’s health reform plan is ethically very good news. Excluding tens of millions of Americans who had no access to health insurance because they could not afford it or because no one would insure them because they were too sick has long been the single greatest ethical failure of American health care.

The Supreme Court has now affirmed, admittedly on purely legal grounds, that imposing a mandate on each of us to pay for health insurance for all of us can happen. But Obama and the administration cannot become complacent. They still have a huge challenge before them — selling the American people on the morality of insuring access to every American to health care by mandating that we all pay.

Critics of the Affordable Care Act have convinced America that the Obama plan stinks. The government mandate was their best bogeyman in stirring distrust of health reform. They had placed all their chips on a "shock and awe" strategy of having the Supreme Court blow away Obamacare’s mandate in one gigantic negative decision. That did not happen. 

The critics will now shift gears and start to fight a guerilla war to chip away at the plan. They will complain about cost, government meddling in the doctor-patient relationship and reopen talk of death panels. The only way to meet these criticisms is for the administration and its allies to do what they still have not done — convince the American people, not of the legality of health reform as happened today but of its morality.

Poll: Do you agree with the Supreme Court ruling on health care law?

The moral case involves three key arguments. First every American deserves equality of opportunity.  The only way to ensure that is to ensure access to basic health care. Just as is true of food and education, you need access to basic health care to compete and flourish in a free market.

Second, no one should go without health care just because they are sick. Excluding people because of pre-existing medical problems is simply immoral.

And lastly if we are a truly a nation, then we have to act like one and bring everyone into access to basic health care by all being willing to pay something for it. Individual rights dominate our political rhetoric. What we need to hear from the President is more about our duties and obligations as citizens to one another.

The Supreme Court has now deemed health reform legal. It is now up to the president to make sure that Americans buy into the argument that it is moral.

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The recommendation Monday by the prestigious United States Preventive Services Task Force (USPSTF) that the widely used PSA test for prostate cancer no longer be used routinely for men of any age is likely to be met with howling.

There are plenty of doctors who offer PSA testing.  Not a few celebrities, such as former New York Mayor Rudy Giuliani, have made public service announcements urging men to get tested based on their own experience with prostate cancer. 

The true believers are not going to be swayed by this recommendation not to test, despite the fact that the task force carefully reviewed all the evidence on PSA testing. The recommendation against PSA testing is likely to meet the same fate as the earlier task force recommendation against annual mammograms for women in their 40s — disbelief, followed by testing as usual. That is unfortunate.

We all want to believe that early detection of cancer is a good thing.  A large number of doctors are committed to early detection too. But, using a bad test is actually worse than not testing at all.  

The wish for a good test is understandable. Prostate cancer is the second leading cause of death from cancer in men.  If there is a test that can help detect it early then how can that possibly be bad?  And if so many men swear by the test, saying it saved their lives, then what can the USPSTF possibly be thinking in saying men should not bother with PSA testing? 

The answer is that bad tests are bad when they are hugely inaccurate.  The PSA test is an outstanding illustration of this.

PSA testing produces far more misery than good.  Positive PSA tests often are inaccurate, detecting only an infection not cancer. As many as 70 percent of men with poor test scores do not have cancer. This leads to lots of worry and unnecessary procedures for the majority of men who will get a false result. Frequently, unnecessary surgery leads to incontinence, impotence or other nasty complications.

Even when cancer really is present in older men the tumor is usually growing so slowly that leaving it alone makes more sense then undergoing surgery to have it removed.

No man should trust his life to a test that is wrong more often than it is right.  Nor should payers keep paying for a test that does far more harm than good.  It is time to admit that the PSA has flunked and to renew research to find a better test.

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Lots of Americans buy the argument that we should ration health care according to lifestyle. So do many employers who are trying to charge their obese employees more for health insurance.  But if we are going to penalizing the health care sinners amongst us, shouldn’t we target all of those who raise our collective health care bill through poor lifestyle choices? This means you, cat owners.

The costs of a cat-loving America ought to be looked at in the same vein as recent calls to tax fat people. According to a Forbes magazine poll, one in three Americans believe that obese people should pay more in taxes than those who maintain a healthy weight. The same sentiments prevail among doctors in the UK. 

Overweight people cost the system a ton. People seem to think it's fair to ask them to pay more if they choose to munch chips while reclining on the Lazyboy watching Paula Deen on TV. Let's apply the same logic to all lifestyle choices. Cats are costing each one of us a lot of money to treat the allergies, asthma, skin problems and hospitalizations that they cause.

According to the Humane Society of the United States, there are over 86 million owned cats in the USA.  Nearly a third of you own these furry disease vectors. More than half of you cat owners have the gall to own more than one! 

At a recent meeting on immune diseases in Chicago, doctors and scientists who are studying allergies made it clear that cats are a menace. I learned that 17 percent of Americans, or 60 million of us, have allergies to cats.  So that means the odds are high that either you are allergic or someone you have over to your house could be.

Once a cat is in a home it is nearly impossible to get the cat allergens out of the bedding, carpets and furniture. The cost to all of us of treating cat-induced asthma, rhinitis, skin reactions and allergies is big. While there are no specific numbers for paying for the shots and drugs to treat the health problems due to cats, the overall medical cost for treating all allergies in the USA exceeds $7 billion.  And that does not include time lost from work or days out of school due to allergies.

One drug that is now frequently prescribed for kids and adults with chronic asthma due to exposure to cats, omalizumab, costs anywhere from $6,000 to $24,000 a year depending on dose. One in 2,000 of those with cat allergies require a trip to the hospital in any given year due to an acute adverse reaction to shots or drugs!

If we apply the "fat tax" logic, the obvious ethical question is why the heck are we cat-free citizens paying for the health problems associated with tolerating cat ownership? If you choose to own a cat or refuse to get rid of one even after being told to do so by your doctor, then why should I pay for this gross irresponsibility? 

So bring on the fat tax -- but tax all those who choose to make themselves, their kids and visitors sick by lifestyle choices, whether it's eating too much junk food or housing felines. And hey, employers, don’t hire cat owners, or at least make them go to classes where they can learn about the true cost that kittens impose on us all.  

While we are at it, let's impose a fine on those who fail to wear a hat while at the beach, risking melanomas, and a skiing tax for those nutty enough to speed downhill knowing that the orthopedic clinic awaits at the bottom.

Of course, none of this applies to dogs or dog owners such as me. Those who own them should receive a tax break. Pet ownership has a lot of benefits for your health, particularly if the pet is a dog. But cats are a very different matter. Those who insist that personal responsibility ought to drive what everyone pays for health insurance had better let cat owners know what is best for them.

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An article just published in the highly respected journal Fertility and Sterility ought to give anyone thinking about using “test tube” baby technology pause. A review of 124,000 children born through two very common infertility treatments -- in vitro fertilization, creating embryos in a dish and transferring them to a womb and ICSI, in which a single sperm is injected directly into an egg -- showed large increase in the risk of having a child with a birth defect. The risk was 37 percent higher than that seen in children made the old fashioned way. That is a huge number.

There is some danger that this message will not get heard by those thinking about using infertility treatments or considering putting off having a baby until later in life figuring they can use IVF if they need to. 

Celebrities continue to appear on television gab shows proclaiming that they used infertility treatment to have a child and that it was a breeze. Stories about Nadya Suleman and other super-multiple pregnancies rarely mention the grim facts about disability and premature death that accompany these morally dubious pregnancies. Too many clinics providing reproductive services for cash fail to emphasize the risks faced by kids made technologically.

I am not anti-technology when it comes to making babies. The position of the Catholic Church and some social conservatives in opposing the creation of life with a technological assist when infertility prevents a married couple from reproduction strikes me as cruel and anti-life.  And those who worry about turning baby-making into manufacturing when it is done in a clinic seem to me to have a very optimistic view about the circumstances that accompany the creation of a huge number of kids when sex is used.

That said, the large risk factor now on the table needs to be a key part of how everyone thinks about making babies in medical settings. The authors of the study say they do not know why the risk is so large. And it has taken far too long for this question to get asked. We need to be sure that long-term monitoring of children born by means of infertility treatment is routine and that more research is done into the causes of health problems for kids who cannot make choices about facing risk. 

Infertility treatments have brought a great deal of joy to many.  But, the price is high -- so high that we need to be sure it is a key element in thinking about using these treatments.

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A 32-year-old pregnant woman from Massachusetts, known only as Mary Moe, is at the center of a heated battle over abortion and sterilization, in a case so complex you could use it to teach an entire course on bioethics.

Moe suffers from severe schizophrenia and bipolar mood disorder. She has been pregnant before: The first time she had an abortion, and the second pregnancy resulted in a boy now being raised by Moe’s parents. Between her abortion and the birth of her son, she suffered what court papers refer to as a “psychotic break," and had to be hospitalized. She now takes medication, but her diseases are so severe that she is still not in touch with reality.

Forced abortion for mentally ill woman? No way, court says

At a court hearing last December the state Department of Mental Health asked that her parents be made her guardians. The parents wanted their daughter, then two months pregnant, to have an abortion. During that hearing doctors testified that the drugs Moe is taking threatened the health of her fetus. They also said stopping them would place her at serious risk of going "deeper into madness."  

The judge found the argument for an abortion persuasive. She ordered that Moe's parents be appointed as co-guardians, and said they could do whatever was necessary including having their daughter "coaxed, bribed, or even enticed ... by ruse" into a hospital where the abortion could be performed. The judge added that Moe should be sterilized after the abortion so that the same situation did not come up again.

The decision was immediately appealed. Now, a Massachusetts appellate court has overturned the lower court, and sterilization is off the table. The appellate court said that if Moe were competent she would not want an abortion, since she has said she does not want one. So no abortion is in store either.

Did the appellate court make the right decision? I think so -- but for the wrong reasons.

The state of North Carolina just paid out big sums of money to people who had been sterilized without their consent in the 1960s and 1970s. Sterilization has been abused again and again in this and other countries. There is no reversing it. Whatever needs to be done to help Moe, it is not sterilizing her.

If she is not to be sterilized, can severely mentally ill persons like Moe be told never to have sex? The court didn't broach the subject, but it is a key ethical question.

It is probably impossible to prevent Moe from having sex.  But given her mental state she is hardly capable of consent.  I think she needs to be on permanent birth control until and unless she somehow recovers from her mental illnesses. Then, and only then, should she be free to have a child.

What about the abortion? She cannot consent to it. The Massachusetts courts are trying to guess what she would want if she were competent using some of her statements to guide them. That is a hopeless quest. Moe is too sick to tell us anything. And, despite the judges’ efforts, it is pointless to pretend to know her wishes about this pregnancy.

Her poor parents do not want to worry about their daughter, raise one of her children and find themselves with another. But their stake in all this disqualifies them to decide what ought to happen.

What we are left with when autonomy is gone and family are conflicted is trying to do what is best for Moe and her fetus. I do not think an abortion clearly meets that principle.

If Moe’s medicines put the fetus at risk, then try to lower the dose. If Moe herself becomes even more impaired, stop. If Moe cannot possibly raise the baby and her parents cannot either, then adoption is the best road to follow.

Allowing Mary Moe to become pregnant again is not in her best interest. Ending the life of her fetus when she cannot tell us what to do is not in the best interest of the fetus. There is a lot to think about in the case of Moe, but forced sterilization and non-consensual abortion should not be part of that thinking.

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Three-year-old Amelia Rivera has a rare, very serious genetic disease known as Wolf-Hirschhorn Syndrome that can cause mental impairment, epileptic-like seizures and kidney failure. In the future, it's very likely she’ll need a transplant.

But, according to her parents, Amelia's mental disabilities are the reason she's being denied  the kidney transplant. Her parents told the Associated Press Wednesday that the decision is being determined by a doctor with The Children's Hospital of Philadelphia.

AP

The parents of 3-year-old Amelia Rivera, claim she is being denied a kidney transplant because of her mental disabilities.

"It's one doctor who's never seen us who is making this call," the father, Joe Rivera, told the Associated Press.

In a recent blog post written by her mother, Chrissy Rivera says they were told by her doctor and social worker that Amelia would not be a candidate for a transplant because of her mental disability, not even if a family member donates a kidney.

In the blog post, Rivera recounts this exchange with the doctor when she heard the news:

“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

“Yes, [said the doctor]. This is hard for me, you know.”

The blog post sparked an online firestorm -- including more than 15,000 signatures on a petition demanding that the decision be reconsidered by the Children’s Hospital of Philadelphia, an affiliate of the University of Pennsylvania where I work. 

In response to the uproar, the child's parents are planning to meet with hospital officials next week, according to AP.

The issue of disability and access to a life-saving transplant merits serious reflection.

Whether the kidney comes from a cadaver donor or a living one, transplant teams always think about a set of medical facts in deciding whether to transplant anyone. Is the person able to go on kidney dialysis? Is she healthy enough to survive surgery? Does the patient have a donor who closely matches her blood and tissue type increasing the chance that the transplant will work? There is nothing special about the presence or absence of mental disability with respect to these questions. But morally, things get a little stickier.

Those being considered for a transplant must be able to comply with what is required after a transplant — taking a lot of medicines and watching out for early signs of rejection of the transplanted kidney. This means that those with severe mental impairment need willing, round-the-clock helpers so that the transplant has a reasonable chance of succeeding.

Transplant teams also think about the chance for long-term survival, especially when a scarce cadaver kidney is involved. Some severe mental disabilities are linked to genetic problems that create other daunting physical challenges -- bad hearts, severe diabetes, malformed organs, etc., which can drastically shorten lifespan.

Because of that, some transplant programs don't consider operating on those who are facing significantly shortened lives on the grounds that the need for transplants among kids is huge and the scarce supply of cadaver kidneys should be used to save the most lives and the most years of life.

It’s even more complicated when the patient is a very disabled person who resides in a care facility. A child who is immunosuppressed, whose bodily defenses are knocked out to permit the transplant to work, will be put at huge risk of getting a deadly infection if she lives in an institution.

Each transplant case involving a disabled person has to be looked at individually.  All that said, children with intellectual disabilities do not appear on transplant waiting lists with the frequency that should be expected.  And in 1990 Congress passed the Americans with Disabilities Act  which prohibits discriminating against patients solely on the basis of a disability.

There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant.  But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases.

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