December 2008
Electronic "Sex Chips"
Scientists in the UK are working on methods to stimulate the brain, specifically in the orbitofrontal cortex, the part of the brain that feels pleasure from eating and sex. According to The Telegraph, implantation of a chip into that area of the brain is expected to result in increased sexual pleasure. Previous studies in one woman with very low sex drive becoming one with a very active sexual appetite. However, the scientists reported, "She didn't like the sudden change, so the wiring in her head was removed."
Using this chip technology, deep brain stimulation may be used to revive or enhance areas of the brain that are lacking. This is already done for Parkinson's disease, and it would appear now that researchers are looking to do the same for pleasure enhancement. Even better, scientists believe it may be able to work on an electric switch to be used as needed.
As the Oxford researcher Aziz stated:
"When the technology is improved, we can use deep brain stimulation in many new areas. It will be more subtle, with more control over the power so you may be able to turn the chip on and off when needed. In 10 years' time the range of therapies available will be amazing - we don't know half the possibilities yet."
In fact, this is the frightening part. Turning on sexual stimulation with the flip of a switch--like with the Clapper? Of course, such a device has the potential to be abused just as erectile dysfunction medications are used by those without ED, just for enhancement. But when one is talking about implanting a chip in the brain--aren't the concerns about risks and abuse greater? How would doctors be able to tell the difference between those suffering from true anhedonia, the inability to experience pleasure, from those who can and who want to be enhanced? Or should they have to? Is the brain exceptional in this way?
These are tough neuroethics questions for which we need answers soon. As in, before someone develops an Orgasmatron chip that's ready for consumers--and that is certain to be in high demand.
Summer Johnson, PhD
Is A New DSM Written in Secret Necessarily Unethical?
Sarah Rubenstein from the Wall Street Journal Health Blog has explained that there is a concerning development regarding the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders: it's being written in secret.
The authors of the entries for this latest version of the Bible of mental health has been asked to sign a non-disclosure agreement. The burning question is: why? The second question, of course: is it ethical?
There are many reasons for why a NDA could have been asked of the DSM authors--the APA surely knows that leakage of what authors wrote in the new DSM is bound to cause controversy and the slow trickle of that controversy over time, as each author reports what he or she wrote would cause real political problems for the APA and put a cloud over the DSM-V.
Moreover, unpopular opinions voiced by authors, disclosed before the manual was published, could result in pressure being put on the APA to retract or revise that entry before the 5th version is even printed. History has certainly seen its ups and downs with a variety of entries related to controversial topics classified as "mental defects". Perhaps the APA is hoping to avoid such controversy by releasing the manual all at once--avoiding many of these problems.
The ethical question is much tougher to answer. Asking clinicians and academics to remain silent is, of course, their choice. It is not a breach of academic freedom if they freely choose to sign the NDA. Nor does it suggest that they have something to hide--simply that they will not discuss their opinions until the entire manual is released. In a way, it's not that different from a medical journal article being embargoed until the journal is released and a press release is sent out to the press.
Given the fact that this version of the DSM will be taking on such controversial topics such as "gender identity and addictions such as shopping and eating", it is no wonder that the APA would prefer to keep the lid on until the entire manual is released and let its critics attack the manual in its entirety rather than piecemeal. A political tactic, for sure, but I'm not so sure it's an unethical one.
Summer Johnson, PhD
Move Over CoverGirl and Revlon. Here Comes Latisse.
Here is one enhancement I think the world could have lived without. From the makers of Botox, Allergan, Inc, comes a drug that will make your lashes--longer, thicker, darker, Latisse.
According to the Washington Post, the FDA has approved this drug for daily use on the upper (but only the upper) eyelid and in a miraculous 16 weeks women (and men) can have the lashes of their dreams.
With such a pretty name, who could have a beef with a drug that just wants to make eyelids more beautiful? Beware, the chemical in Latisse is simply a hair follicle stimulant--so if it gets anywhere else on your face, you could be in for a hairy surprise. Better yet, there's no guarantee that the rate of growth of your lashes will be the same on each lid or even on the same lid. You could end up looking like you have Chewbacca's eyelashes.
For those of you in search of the perfect lash: go for the fake ones or a good mascara wand. It's guaranteed to be cheaper, effective, and with no fear of side effects or unwanted Wookie hair.
Summer Johnson, PhD
When It Comes to Nano, Feds are Passing the Buckyball
According to an article from Scientific American, the National Research Council has weighed in on the regulatory efforts of the federal agencies responsible for monitoring the safety and use of nanoparticles and objects using nanotechnologies.
For the more than 800 consumer products using nanotechnology, the NRC has said that no federal agency including FDA and EPA "has failed to prove that the diminutive particles are not dangerous." Of course, this isn't the same as saying the particles ARE dangerous. But if the standard being used by the government is to prove that nanotechnologies are SAFE, not just that they aren't harmful. Then no agency has proven that yet.
Moreover, the NRC has said that National Nanotechnology Initiative, the overarching government plan to fund and oversee nanotechnology in the United States, "lacks a coherent plan for ensuring that current and future uses of nanotechnology do not pose a risk to human health or the environment."
So what does this mean for the average human being? Well, we know that there are exposures to nanoparticles in everyday life--but we simply don't know what significance that risk has. Without that data, regulation to ensure that those levels aren't breached or that certain products do not contain to great a level of a certain chemical or compound does not do much good.
So really there are two problems here: lack of research funding for risk assessment and epidemiological data regarding what we know about the nanoparticles already released in the environment and then the regulatory framework to enforce reasonable policies based on that data.
So it's time for the federal government to start spending the research dollars in the right areas, then pass the regulations necessary, and to stop passing the buckyball.
Summer Johnson, PhD
Eat a Kangaroo--Save the Planet?
As far as environmental ethics issues go, this one takes the cake. But research done in New Zealand by the Pastoral Greenhouse Gas Research Consortium suggest that eating meat from animals that produce significant amounts of gases that harm the environment simply will not do. Instead, eat a kangaroo!
Before, I make this sound too much like a Dr. Seuss book, this was reported by The New Scientist, and there is good science behind the claim. Ruminants (animals that emit through their chewing of cud) carbon dioxide contribute a significant amount of greenhouse gas. As the article puts it, quite eloquently:
Worldwide, livestock burps are responsible for 18 per cent of greenhouse gas emissions - more than produced from all forms of transport combined.
Now, is the solution to eat roos? I'm not so sure. There are chickens after all, sea creatures, and other things that do not burp. But the point is well made, the more of these livestock we humans consume the more we contribute to the greenhouse gas problem and climate change. That's something to think about before you order your next lamb chop.
Summer Johnson, PhD
McGee Writes One of The Scientist's Most Controversial Columns of the Year
In an email sent out to The Scientist readers today, an article called "No More Periods-Period" by AJOB's Editor-in-Chief Glenn McGee was noted as one of the most controversial columns of 2008.
In this piece, McGee ponders and predicts the end of female menstruation and finds no real fault in women being able to make this reproductive choice, which is, in essence, like so many others they already make. In an era where women can choose not to ovulate or procreate, why can't they choose not to menstruate?
The "human nature" crowd might find this argument problematic, but for McGee the prospect of no more periods is just another advance in human reproductive health that may just liberate women a little bit more. Who can argue with that?
Summer Johnson, PhD
My Doctor's Always on Call--Via Mobile
A company called BPL Mobile has launched a new service called, "Doctors on Call", a 9 am to 9 PM service that will allow patients to speak to remote doctor about their medical conditions. This Bangalore-based service is said to diagnose patients into three, highly specific, categories: "Acute", "Chronic" and "Emergency", says Techtree.com.
As Techtree explains it:
While the doctor who attends the call will probe to understand the present condition of the patient on the phone, and will offer palliative home remedy to the subscriber under the type: 'Acute condition', the attending doctor will suggest a future course of action in terms of Lifestyle change, preventive measures and specialist to be consulted for further management for the type: 'Chronic condition'. In the case of an 'Emergency', the doctor will suggest if the calling patient needs to be rushed to the nearest hospital, based on the history and then will immediately end the call.
Anyone see a problem here? Diagnosis and treatment by phone? Then the doctor calls in a prescription? For chronic conditions that have been managed by live physicians for months or years, maybe this service could prevent unnecessary and costly doctors visits. But for anything other than that--anything in the "Doctor on Call" Acute or Emergency categories--forget it. That is no way to provide care to patients--absent observation and hands on examination.
Techtree acknowledges that at least one limitation of this service: it only is available from 9 to 9. But that is only just the beginning....
Have no worries though: there will be an internet-based service available in January. "Doctor on Chat" is on its way!
Summer Johnson, PhD
NY Governor--Public Health Crusader
On Tuesday, Democratic Governor of New York, David Paterson, spoke out against an epidemic in this country. The epidemic of fat. Now he is putting his weight (pun intended) behind a $404 million dollar tax, or put another way an 18% tax, on sugary drinks like that dangerous soda pop that makes kids and adults more round around the middle.
In a commentary which appeared on CNN.com, Paterson said, "I understand that New Yorkers may not like paying a surcharge for their favorite drinks. But surely it's a small price to pay for our children's health." Indeed. In fact, this legislation is not a new idea, but one that has been proposed diligently year after year by a lone New York Assemblyman Ortiz. For years, he has proposed over and over, the unpopular "fax tax" on sugary drinks, video games, and other products that promote unhealthy behaviors or eating habits. Each year, the bill lacked sufficient support, never made it out of committee, or was defeated.
But now, the Governor is paying attention. Childhood obesity is one of his issues. So, now a "fat tax" seems like a good idea. But wait--aren't there still ethical issues to be concerned about? Of course, there is the liberty argument. There is the argument that it is a regressive tax. But I'm with Governor Paterson, those arguments aren't strong enough to outweigh the significant morbidity and mortality that results from childhood obesity in this country.
Plus, I don't buy the argument made in the New York Times that argues there are plenty of other dangers to public health that the state actually promotes because they make revenue for the state's budget--such as cigarettes or gambling. However, there are two important differences between cigarettes and gambling for these purposes: 1) the money in Governor Paterson's plan will go toward public health programs to PREVENT obesity and 2) sugar, unlike cigarettes or gambling, isn't inherently bad for you.
Sugar in moderation is, of course, essential for growth and metabolism. That's, obviously, the tricky part in all of this: how do you de-incentivize something that is also essential for children, just in moderation, but is currently so plentiful and so cheap?
Others have asked, if the governor really cares about public health, where's the fast food tax? Right after soda is taxed, I'm all for slapping a 20% surcharge on my Whopper, thank you very much. The question is, of course, whether the restaurant lobby is as strong as the sugar lobby, and whether such a bill could ever be passed.
Will attacking soda, or sugary things in general, fix the problem entirely? Of course not, but it is a place to start. Demonizing any one activity or food group will never work to curb obesity nor will it help children develop healthy habits for a lifetime. However, if we make those drinks just a little bit more expensive for those of us who can afford a 18% tax hike on our Cokes, then put the money toward public health programs to educate children about physical activity and good nutrition, it just may work. Or at least be a start.
As for this bioethicist, as soon as they pass that law, I'll be off to by dozens of cases of Diet Coke myself right here in New York.
Summer Johnson, PhD
Caplan Discusses Bioethics and the Obama Presidency on NPR
Yesterday, Arthur Caplan discussed on NPR's Fresh Air the array of bioethical issues that the Obama presidency is going to grapple with in the coming years.
As the article states,
In an article last month for MSNBC.com, Caplan writes that it is crucial for politicians and pundits alike to pay attention to the messages sent by the American public in the election: "Like it or not -- and I am well aware that many are not ready to let go of these issues -- the nation may be starting to move past the endless battles over stem cells, embryos and abortion."
Caplan discusses these, and other issues, in greater depth in this 30-minute plus interview. Take a listen.
Summer Johnson, PhD
Is Face Transplant Worth Risking Patient's Life?
Today Arthur Caplan asked this question in his MSNBC column. Here is (potentially) the answer:
The face transplant performed a few weeks ago by Dr. Maria Siemionow, a skilled and caring surgeon, and a team of other specialists at the Cleveland Clinic went far beyond several prior experiments, including the world's first such procedure in France three years ago. The Cleveland Clinic doctors replaced nearly the whole face of a woman with one from a female cadaver.
Given the high risk of failure from the rejection of the donor's skin, is such a pioneering procedure worth the danger to the patient's life?
When face transplants were first proposed 10 years ago I thought they were unethical. But, after the success of the French procedure, and after listening to Dr. Siemionow and other surgeons talk about their preparations for the first nearly total face transplant in the U.S., I no longer think that is so.
A transplanted face is biologically like any other transplanted organ: There is always a risk that the recipient's body will reject it. The immunosuppressive drugs that must be used to try to prevent such a disaster are powerful, but can cause fatal cancers and other serious side-effects, such as kidney failure. Normally, transplant surgeons don't worry much about these risks because they pale in comparison to the certain death that awaits someone whose heart or liver have stopped working. But a face transplant is intended to improve the quality of life rather than save a life, as a heart, lung, kidney or liver transplant does.
It's important to note that the surgical skill required to transplant a face and have it function -- chew, smile, frown, breathe, blink -- has evolved to the point where the odds now favor success. The management of dangerous immunosuppressive drugs has also improved so that handling rejection of the facial tissue seems feasible. There is no doubt that Siemionow has the competency and her team the skills to try the experiment.
After talking to some people with severe facial disfigurement, I realize it makes ethical sense to offer a form of surgery that might kill the patient, because the suffering of the afflicted is so great that they are willing to risk death. We don't hear much about those with facial deformities due to birth defects, burns, trauma, cancer or violence. That's because the stigma of severe facial deformity is so enormous, so staggering, that many simply withdraw from society. Others find that, despite the best efforts of reconstructive surgeons, they are unable to eat, breathe or speak comfortably, and are condemned to lives of suffering and pain.
A face transplant, despite its very real dangers, might bring relief. The science has reached the point where trying to help those who are beyond the help of current medical treatments is not just ethical, but almost obligatory.
No second chances
Yet, even though a strong case can be made in defense of what has been tried in Cleveland, there are ethical concerns about face transplants.
If the woman who received her new face from a cadaver were to begin to lose it due to tissue rejection that could not be stopped, what will happen? There are no second chances with face transplants -- the damage of rejection makes that impossible. What if someone facing this horrendous prospect - life with no face at all -- says no to artificial feeding or breathing? What if they beg for morphine to help them die painlessly and more quickly? Any team undertaking face transplants must be ready to manage a failed experiment.
The only humane response to the courage it takes to be the subject of a face transplant is to be ready to help that person in any way necessary, including assistance in dying. The idea of assisted-suicide for tragic transplant failures pushes right up against the law, but insisting on life with no face, as opposed to a horribly disfigured one, is too daunting a prospect to proceed ethically -- if death is not an option.
Face transplants raise another issue. When you signed a donor card or checked the box on your driver's license, you probably were not thinking that when you died someone might want to transplant your face. We don't know what happened in the Cleveland case, but I strongly suspect they used a donor who had a donor card and whose family also approved the removal of the face.
Do we need to insist that no faces be taken from the dead without the advance permission of both the deceased and their family? Shouldn't the family have some input since they will have to live with the emotional turmoil of potentially seeing a face that somewhat resembles a loved one on another person? And should the laws governing organ donation be revised so donors have the option to give permission, or deny permission, for a facial transplant?
Issues of personal identity
The Cleveland transplant is a ringing alarm clock that it is time to revisit the legislation governing organ and tissue donation. Face transplants raise emotional issues that do not arise when a liver or a pancreas is transplanted. We identify ourselves and each other by our faces. We fall in love with faces. We know much about mood, emotions, and state of mind by simply looking at faces. Some may have no issue giving their liver, corneas, bones, heart or lungs to help others, but the face is simply a different matter.
Should we allow each person to set their limits on what can be taken from their body after death? Facial transplants are the cutting edge of a wave of new forms of transplantation, including hand and limb transplants, ovarian transplants, uterine transplants and testicular transplants. While it is not clear that these newer types of transplants cross ethical boundaries that ought never be crossed, they surely do raise issues of personal identity and reproductive capacities.
The transplant in Cleveland was done with the laudable goal of trying to help those who are often on the margins of society due to their appearance, or because they cannot eat, speak, drink, smile or breathe without huge effort. Some victims take their own lives in despair. These people should be able to take their chances with a facial transplant if nothing else can help them. That said, medical advances in facial transplants push us into a very new ethical world where life after failure may not be an acceptable option, and where some among us may say they are not willing to give what is required to help.
Arthur Caplan, Ph.D., is director of the Center for Bioethics at the University of Pennsylvania
The December Issue of The American Journal of Bioethics is Now Online
Hot off the presses and soon to hit your mailbox, the December issue of The American Journal of Bioethics is now available at bioethics.net.
This month's issue features an article by Johns Hopkins' researchers led by Jeremy Sugarman who explore the effects that viewing medical television shows have upon medical professionals views of ethical issues. One can only hope that clinician's don't take House, M.D. to be a moral exemplar!
This issue also includes an article written by John Lauritzen about the use of visual images in bioethics and their power in argumentation (appropriately or inappropriately used). Also, this issue features an article by Francoise Baylis who discusses why the use of animal eggs for stem cell research may not be a good path and that crossing species boundaries presents real ethical concerns that must be addressed.
This latest issue of AJOB presents some novel, timely and intriguing issues. Check out the issue right here on bioethics.net.
Summer Johnson, PhD
Doctor, Where Did Your White Coat Go?
Doctors in Scotland have shed their white coats in the name of health and safety, says the NHS. To stop the spread of infections, they are telling their doctors to take off those iconic duds in favor of new less-infectious uniforms with shorter sleeves (that allow for hands to be washed and don't get as dirty) and more stylish colours.
So what will new medical students in the UK get? A short sleeve blue uniform courtesy of the NHS? Perhaps it will be a good thing--with the white coat creating a sort of boundary between patient and physician that can prevent good communication, information sharing, and difficulty building trust--perhaps the more casual looking, short-sleeved doctor in shades of blue will be the more approachable 21st century physician that Britons are looking for.
Just maybe....
Summer Johnson, PhD
New AJOB Issue Available Online
Today on bioethics.net, you will find the November issue of the American Journal of Bioethics. Featured in last month's issue of the journal are articles by Juli Murphy and colleagues from the Genetics and Public Policy Center at Johns Hopkins University who report on the attitudes of citizens regarding the return of individual results from large cohort genetic studies.
Also in the issue is an article by Jotkowitz and colleagues discussing the ethics of the Groningen Protocol and non-voluntary active euthanasia. These authors argue the protocol cannot be justified as it violates the basis tenants of medical ethics.
Finally, Adil Shamoo and Jack Schwartz present a proposal for achieving "universal and uniform" human subjects protections in the United States by having each state create human subjects research regulations in addition to federal regulations. This article inspired the editorial called Federalism, Federalism Everywhere which discusses this and other trends involving "states and bioethics".
Visit The American Journal of Bioethics online to see this issue today.
Summer Johnson, PhD
Who Cares if the Vatican Weighs in on Bioethics?
No one. At least that's my view. Certainly not American Catholics who use birth control, IVF, pre-implantation genetic diagnosis, and a wide range of other reproductive technologies previously and even more so now get a Holy finger wagging from Rome.
Moreover, I don't know any American Catholics who oppose the commonplace forms of human enhancement we use today and even the borderline ones such as taking brain-boosting drugs or drugs to help us sleep at night.
And this concept that the conservative movement more generally keeps leveraging--human dignity--the centerpiece of Catholic bioethics? Perhaps it could be useful, if anyone knew what it meant.
The only group, as was claimed in a Washington Post story on Friday, who may care about the Vatican's edicts are bioethicists who will, for a short period of time ponder the what, the why and the implication of Rome's declarations.
Bioethicists care about what Rome does, but I would argue not any more than we care what other nations rule in regard to reproductive technologies or other major religions decide on these very same issues.
So the Vatican has taken its stance like any other organization, religion or individual can. We will discuss it, debate it and wonder what difference it will make. But the Catholic church is fundamentally different from governments or other kinds of organizations.
The Catholic church is neither in touch with or interested in developing recommendations for the 21st century to which its followers could or would adhere and it is not a government with police power, at best the Catholic church will do what it has just done. Take positions knowing full well that no real change will come of it.
Summer Johnson, PhD
She Has Death Written All Over Her
A New Zealand woman isn't leaving anything to chance in the event she is taken into an emergency room unconscious. She doesn't want there to be any mistake about her wishes in the event of a life-threatening event. She's so serious about it, in fact, that she tattooed "Do Not Resuscitate" across her chest, says a local New Zealand television station.
How's that for body art that is also functional? It sure beats a Tweety bird or a tribal band for making a statement.
What's next? Pro-lifers tattooing little pictures of embryos on their arms? You see, Paula Westoby isn't just a 79-year-old grandmother trying to protect herself against the assault of the defibrillator machine. She's an advocate for an organization called Exit International that promotes voluntary euthanasia.
So in that case, perhaps if someone you know is thinking of getting a tattoo, you could recommend a Tweety bird but he could hold a sign that says, "I Love AJOB". That's some bioethics tattoo activism I could really get behind.
Summer Johnson, PhD
Coming Soon to a Brain Near You
As reported on Scientific American, researchers in laboratories and universities around the world including at the Wadsworth Laboratories in Albany, NY are moving closer and closer to brain-computer interfaces that are actually able to "unlock" the brains of people suffering from debilitating diseases like Lou Gehrig's disease and others. These devices are able to "sense" the brain waves of these individuals and to transmit them to a computer so that others can read them and communicate with their loved ones or those for whom they care.
The goal of these BCIs (brain-computer interfaces) is to have them be affordable to persons afflicted by conditions that cause persons to be unable to communicate with others around them, to be safe to use in people's homes, and to be able to be used over the long term.
Ethical issues abound regarding the use of these devices in the research and the practice phases that researchers have yet to address. At present the few research participants that have used these devices in the laboratory or at home have been so overjoyed to be using the devices that they have not cared (in my view) that their minds were being read. They were so happy to be able to be "heard" that they did not care that their privacy was 24 hours a day being violated. There were not put in place any oversight mechanisms for what data would, or would not be, shared by the investigators. Or, for example, when the BCI would stop being a research device and become property of the person. The device was so expensive that it could not be purchased by the research participant which meant, in effect, that the person would always be a research participant or he or she would fact the devastating withdrawal of that device when the time came for the study to end.
Now, I don't mean to suggest that these researchers are cold-hearted or that they don't care about their participants. In fact, I know for a fact that they do. But they cannot do their research for free. In fact, I know that they do plan to do their research with most of their participants for life. Yet, as an ethicist, I must ask: at what point, after how many hundreds of hours a research participant has participated in a research study staring at a computer monitor typing letters with his eyes using a BCI should he or she not have earned due to to his or her effort the right to keep the device on which he or she now depends to communicate?
As these devices become more cost-effective and more available to these disease populations, one has to wonder whether these ethical issues will be addressed or whether the research and then their use will just continue unabated. One would hope not. But there is a history of technologies being used in vulnerable populations to the detriment of certain segments of society. That is unless others of us stand up for them and say that we believe that their rights matter, too.
Summer Johnson, PhD.
Feeling Lonely? Blame Your Genes!
According to a recent study reported on CNN, part of the reason you may be feeling lonely this holiday season could be due to your family--but not because they left you high and dry at the holidays or because they ditched you for other relatives. It could because of the genes you have and they don't.
If you sister loves a night alone to watch a movie or clean house and it makes you climb the walls, it may be because you don't share the same genetic make up. Meanwhile, nostalgia, thought to buffer the effects of loneliness, serves the purpose of creating a sense of community and social support for people.
So what's the "gene therapy" for those with genetic loneliness? Community service, social interaction, anything to get people out and to give them a sense that they are not alone in the world, says these researchers. It gives them a sense that they belong.
Summer Johnson, PhD
Enhance Thyself!
Colleagues at Stanford and Penn have published a piece in Nature extolling the virtues of cognitive enhancement. The simple conclusion: enhancement is no longer a dirty word.
Greely, Sakahian, Harris, Kessler, Gazzaniga, Campbell, and Farah begin the argument by stating that a significant portion of students are striking deals on college campuses for brain enhancing drugs. (Not to mention of course that their professors are on the stuff, too.) But they don't just say that it IS happening but that it SHOULD be happening. These ethicists go so far as to say that mentally competent adults should be allowed to enhance their brains--that it is a morally acceptable goal.
Beyond that, the authors acknowledge that their are concerns in a neurologically altered world. Will it be safe? It must be. We can't have people walking around with half-cooked brains, can we? Moreover, whether this is something that we allow children and adolescents to do is of great concern. For my money, I think that adolescents should stay off the brain-modification wave. When to get to college, if you want to get on Provigil and stay up for a week straight, have at it. But until then, sleep my child. Sleep.
I couldn't agree more with the authors of the Nature paper more that a culture of neurologically changed persons could result in certain parts of our society--in the educational system or the military, to name a few obvious places. The only way to prevent this is if WE say we don't want it and to let our moral views and our voices speak out against it now before our actions and our policies let it happen. Particularly in the military, where things happen behind closed doors, the likelihood that freedoms will be taken away is particularly great. The only way to prevent it is to speak out against it now.
Where children are concerned the only way to prevent certain uses is to say, in advance, how we don't want cognitive enhancing drugs to be used in children before, during and after they are used in children. If we don't like how Ritalin is used in children in school now, we can STILL speak out against it. Why do we think nothing will change?
I applaud this essential discussion by our colleagues--the time has come. We all are enhanced in one way or another. Cognition has seen its time come as well.
Summer Johnson, PhD
Working Can Make You Sick!
A recent online study has reported that one-fifth of workers say that working at their jobs makes them ill, says Reuters. As the article reports,
"On average, 19 percent of respondents globally said their job was adversely affecting their health, with an additional 13 percent saying their work was so stressful it was making it hard for them to sleep at night."
That's a lot of sick and sleepless people just as a result of making a living. Among the nations surveyed, Japan had the highest percentage of respondents saying that work made them sick, followed by Canada. Meanwhile in New Zealand, India, and Australia the lowest proportions of workers reported illness.
The take-home message here is not to avoid working as to stay well (sorry, everyone). But instead these data suggest that unhealthy workplaces contribute to a significant amount of lost sleep or morbidity--at least that's what the workers themselves claim. The caveat here, of course, is that the respondents to this survey could be misattributing work as the source of what ails them--while it could be other factors.
Even so, this study does suggest that employers should pay greater attention to wellness in the workplace and the environment in which their employees spend 1/3rd of their lives.
Summer Johnson, PhD
Glenn McGee at the Autism Hangout
Glenn McGee, Editor-in-Chief of the American Journal of Bioethics and founder of the Institute for Ethics and Autism, was interviewed by the Autism Hangout to discuss ethical issues in autism.
Click on the link to listen to his discussion with Craig Evans featured in the Key Learning of Autism Thought Leaders section.
Summer Johnson, PhD
Smith and WaPo: What Does It Mean to Be a Good Science Journalist?
Within one 24 hour period last week, two articles discussing science journalism and questions of evidence versus interpretation appeared.
The first was a Washington Post column by Deborah Howell which tried to make "sense of science reporting". In particular, what struck me from this column was a comment by David Brown, science reporter for the Post, who said:
"In science, there is a natural tension between evidence and opinion, and evidence always wins. What authority figures have to say about anything in science is ultimately irrelevant. Unfortunately, in a lot of science reporting, as in a lot of reporting in general, that isn't the case.''
Minutes later, I was confronted by a blog post from Secondhand Smoke's Wesley Smith criticizing former Washington Post reporter Rick Weiss, who has now gone on to work for the progressive think tank, the Center for American Progress. His criticism? That Weiss has been spit out the revolving door of journalism and has landed squarely where he always was--writing pro-science, pro-stem cell research pieces, but now for a political think tank rather than a newspaper.
Jumping on the Conflict of Interest Bandwagon
After the Cleveland Clinic announced last week that it would disclose all of its physician's financial relationships with pharmaceutical companies, other hospitals are following suit as not to be left behind on the ethics bandwagon.
Just 2 days after the Clinic's announcement, Penn Medicine has announced that they too will make disclosures. It's a good thing too--leading research that spurred institutions to think differently about gifts, large and small, was none other than Penn's own Arthur Caplan who published the article in the Summer 2003 issue of AJOB.
After doing a little digging, however, I have to say that I hope that other hospitals, large and small, follow the Clinic's lead in publishing disclosures online. Yet, with that said, I hope that they do a better job than the Clinic on the writing and placement of the disclosure.
When I searched for physicians at the Clinic to see if they had any disclosures to make, I found the link below their Biosketch, Education, Specialty Interests, and other relevant characteristics. The very last link on each faculty page is "Industry Relationships". When one clicks on the link a paragraph appears reading:
"Cleveland Clinic physicians and scientists report if they have any collaborations with the pharmaceutical or medical device industries as part of the Cleveland Clinic's procedures. The Cleveland Clinic publicly discloses payments to its physicians and scientists for speaking and consulting of $5,000 or more per year, and any equity, royalties, and fiduciary relationships in companies with which they collaborate. In publicly disclosing this information, the Cleveland Clinic tries to provide information as accurately as possible about its doctors' connections with industry and those of their immediate family members. As of Date X, Dr. Y has reported no financial relationship with industry that is applicable to this listing. Patients should feel free to contact their doctor about relationships with industry and how the relationships are overseen by the Cleveland Clinic. To learn more about the Cleveland Clinic's policies on collaborations with industry and innovation management, go to our Integrity in Innovation page."
As the last link on each page, this ensures that the disclosure statement appears at the very bottom of each faculty page. Could patients miss this information when learning about their clinician? Easily.
And, could this language be a little more user-friendly? Of course. The paragraph is written at a 12th grade level on the Flesh-Kincaid scale (as high as the scale goes) and has a reading ease of 16.6. Informed consent forms are ideally written at a 6th-8th grade level--so shouldn't this disclosure also be written so the majority of inquiring patients will be able to read it?
I don't want to be an enemy of the good in favor of the perfect, but some constructive criticism never hurt anyone. Moreover, as Penn and other academic medical centers jump on this bandwagon, maybe there is more to think about than simply making the disclosure. Making it well is just as important.
Summer Johnson, PhD
Stop That Resident! He's Sleep-Deprived!
Even after considerable efforts to reduce the number of hours worked by medical residents in their training, a new study by the IOM has found that residents are still worked too hard and are dangerously sleep-deprived.
According to ScienceDaily, IOM is now recommending, in addition to the already existing 80-hour work week limitation created by the Accreditation Council for Graduate Medical Education in 2008, that residents can only work a total of 16 hours without sleep, that they should have more days off, and that moonlighting should be kept to a minimum.
Why all this concern about sleepy residents? Well, not only is a zombie less likely to learn what they need to in their medical training, zombie-doctors are much more likely to cause medical errors than their well-rested counterparts.
Let's hope that the IOMs recommendations will be heeded--there's no need to overwork new docs and put patients at risk to simply staff the hospital better or to cut costs. Let's put both the students and their patients first.
Summer Johnson, PhD
Medical Ads on YouTube Go Unregulated
According to the Wall Street Journal Health Blog, a consumer advocacy group is up in arms over unregulated pharma ads found on YouTube.
The Prescription Project reports that medical device ads for prominent companies appear on YouTube, but without the disclaimers and warnings that pharmaceutical or medical device ads must have on television. The group is calling for regulation of ads, regardless of the medium, particularly given the increase of internet-based advertising used by pharmas.
I'm with PP that the FDA should get its act together and regulate ads of all kinds--be they on TV or the internet--so that they meet the same standards for disclosures and warnings. Why should the millions of Internet surfers in search of health information on the Internet not get the same protections as those passively watching the tube? The answer is: they should have the same access to the same information, regardless of the way in which it is delivered.
It would seem to me that companies would not go to the trouble of creating different ads that lack important consumer information if they didn't know they were jumping through a giant loophole. So, FDA close the hole and protect all Americans regardless of how they get their information.
Summer Johnson, PhD
Want to Go to Neuroscience Boot Camp?
As a neuroscientist turned neuroethicist, I am sure I have made more than my share of bioethical goofs. (How DO you pronounce "nonmaleficence?") But for those of you with the opposite problem - bioethicists who wish they knew more neuroscience - your colleagues at Penn have devised a way to help!
From August 2-12 2009, we will hold an intensive summer institute at Penn, designed to bring bioethicists and others up to speed in cognitive and affective neuroscience. Through a combination of lectures, break-out groups, panel discussions and laboratory visits, participants will gain an understanding of the methods of neuroscience and key findings on the cognitive and social-emotional functions of the brain, lifespan development and disorders of brain function.
Each lecture will be followed by extensive Q&A. Break-out groups will allow participants to delve more deeply into topics of relevance to their fields. Laboratory visits will include trip to an MRI scanner, an EEG/ERP lab, an animal neurophysiology lab, and a transcranial magnetic stimulation lab.
The cost of the Boot Camp, including housing and two meals a day, is $3,000, and scholarship support is available. The application deadline is February 1, 2009. For more information please go to http://neuroethics.upenn.edu/boot_camp.html
Martha J. Farah, PhD
Martha Farah is the Walter H. Annenberg Professor in Natural Sciences and Senior Fellow of Center for Bioethics at the University of Pennsylvania. She is also the Director of the Center for Cognitive Neuroscience at Penn and the Communications and Membership Director for the Neuroethics Society.
New Stem Cell Guidelines from ISSCR
Today the International Society for Stem Cell Research (www.isscr.org) is releasing "Guidelines for the Clinical Translation of Stem Cells," which co-chair of the ISSCR task force, Olle Lindvall, MD, PhD, calls a "roadmap." The long-awaited report condemns websites that hawk bogus stem cell therapies to the desperately ill.
I chanced upon these websites shortly after my friend and hospice patient Glenn lost his battle with ALS last March. One company, for example, offers a costly brew of mashed up embryos and promises, not even knowing what a human ES cell actually is. (see "The gap between science and society widens on stem cells," blog.bioethics.net, 4/13/08).
Uninsured and Need an Organ? Forget it.
A study published by researchers from Harvard Medical School has found that persons who do not have health insurance are 20 times more likely to donate a liver or kidney for transplant than to receive one from another donor, says US News and World Report.
While this inequity between organ donors and recipients and their insurance status is easy to explain (one cannot receive a transplant without insurance as they would have no way to pay the hundreds of thousands of dollars in bills, but anyone can be an organ donor), it is hardly morally acceptable in a country where 46 million Americans do not have health insurance coverage. These persons will become the organ source for those who are lucky enough to have coverage through employers or Medicare/Medicaid.
As US News reported:
"The U.S. health care system denies adequate care to many of the uninsured during life. Yet, in death, the uninsured often give strangers the ultimate gift," the authors wrote.
Although the solution to this problem is not obvious, knowing that such a disparity exists is a significant part of the battle. Now it's time to come up with policy solutions (from those specific to organ transplants to universal health reform) to solve this problem among our nation's most vulnerable--both the dying and those on the transplant list.
Summer Johnson, PhD
Is the Era of Personalized Medicine (Almost) Really Here?
In the last week, I've read two news items that have resulted in my asking the question, "Is the era of personalized medicine really here? It would seem as though it is still a long way off--as we do not hear from physicians or anyone else for that matter that available are drugs customized to our specific genetic make-up.
On the other hand, there are good reasons to believe that this reality is ever getting closer--and may be here faster than we think. The first clue was a press release from MarketWatch announcing the First Annual Consumer Genetics Show in Boston next year. As this meeting is described, it is the first major conference devoted to educating the public regarding personalized medicine and genomics. This show is certain to promote a wide range of direct-to-consumer genetic tests and the next wave of diagnostics and treatments for people with a wide range of diseases that we both do and do not thing of as "genetic" (even though all disease at some level is genetic change).
The second clue is that President-Elect Obama is promising to throw his weight behind personalized medicine in the upcoming administration says AP. According to Rep. Patrick Kennedy, who is sponsoring legislation to support personalized medicine efforts in the House, "The president-elect has indicated his support for both advancing personalized medicine and increasing (research) funding." Moreover, some are even going so far as to suggest that a personalized medicine approach would (automatically) be part of any meaningful healthcare reform that attains effective treatments at lower costs.
In addition, while in the Senate, Obama sponsored a personalized medicine bill himself that promoted the R&D necessary to develop genetic tests for certain drugs and to develop a "biobank" of information for researchers and federal funding for this research as well, says AP.
With efforts to promote personalized medicine coming from industry focused at consumers as well as the federal government promoting research and development and new policy, it would seem that the era of personalized medicine is being advanced by nearly every sector. Perhaps it won't be too long before all the hopes and possibilities of this new way of diagnosing and treating disease will not be too far away.
Summer Johnson, PhD
H.S. Kids are Unethical. But Why?
As reported Sunday on MSNBC, high school kids break ethical boundaries frequently--including lying, cheating, and stealing. With 30% of students having stolen something from a store in the last year and 64% admitting to having cheated on a test, one has to wonder: why are our nation's youth okay with breaking the rules?
The MSNBC article quotes one administrator who blames it on the pressures and competition of growing up as a teen today. The researchers conducting the study have surmised that the reason for all this cheating and stealing is because there is a sense of moral acceptability for these behaviors, the standard "well if she can do it, why can't I?" line. This hypothesis is supported by the data that say that 93% of students say they are satisfied with their own ethical character.
However, what I find interesting, and missing, from this survey is any questioning about whether these respondents were ever caught or punished for their misdeeds. My hypothesis (untested as it is) is that high school students are willing to engage in unethical behaviors because they don't believe that there are any negative consequences attached--be they punitive or the long-term erosion of their moral character. "If I can get away with it, why not?" is the standard line I would guess is going through a good number of teens' heads these days.
Moreover, because they are still children, they don't think about the long-term effects of their behavior or conceive of any kind of universalization principle that would give them pause. I doubt very many teens have ever considered, "What would happen not just if I steal, but if everyone else around me also started stealing? What kind of world would we have?" That kind of navel gazing is sadly unlikely among teens who are more focused on driver's licenses and playing PlayStation 3 games than their moral fiber.
These results are troubling, for sure, and the real question remains can this trend be turned around? One has to hope so--otherwise this next generation is likely to suffer from a skewed sense of what is ethical, not just in school but in life.
Summer Johnson, PhD
(Hat tip to Art Caplan for the lead on this article.)
Track or Cross-Country? Genetic Tests Tell You How Your Kid Will Run
As of Monday, a Colorado-based company will begin offering a genetic test to help parents determine whether their child would be better suited to sprint or to run longer distances, says the NYT. Atlas Sports Genetics is offering this test for just $149 to parents who want to "match them with the right activity."
Like most other direct-to-consumer genetic tests, the method is simple: swap Johnny or Jenny's cheek to get some DNA and send it in to Atlas who will determine what variant of the ACTN3 gene they have--thus predicting their sports acumen for life.
Or perhaps that is just the fear--that children will be forced into particular kinds of activities, regardless of interest or desire, because their genes suggested to their parents that they would be better at field hockey rather than basketball. Just like any other predictive genetic test for disease or, now it would appear, for sport, there is the very real concern that children will not be allowed to grow up free of the burden of their genetic information. Instead, once the information is disclosed to them, they likely will feel that certain sports are just "not in their genes."
But wouldn't it be a shame to see Jenny never try to play basketball because she was told from a young age that her propensity would be for running long distances rather than sprinting, even though her heart longs to dribble and shoot? There are countless examples of unlikely athletes who made it to the top of their field--for one, let's just ask who would have guessed a one-handed baseball pitcher would be successful in the major leagues?
In sport, genes, or even physical abilities, aren't the only determining factor. Passion, desire, and hard-work often separate the good athletes from the great ones and those who just play around from those who want to succeed--and then do.
These genetic tests will certainly have a market among pre-Olympian parents, the crazy soccer mom or dad and other kinds of hyperactive parents wishing to ensure that their child succeeds in the "right" sport. Such control and determinism, however, is a horrible idea as it increases the pressure on children to perform to their genetic expectations and takes the passion out of sport.
Summer Johnson, PhD
World AIDS Day: How Far We've Come...and Still How Far There is to Go
Today marks the 20th World AIDS Day. In these last 20 years, medical research has sparked marvelous breakthroughs in the treatment of HIV/AIDS around the world--even in developing countries where for many years since the outbreak of this once-deadly, now nearly chronic, disease treatment was inaccessible due to cost.
Yet before we pat ourselves on the back too much for the successes we have made around the world in the treatment of HIV/AIDS, we must remember that many successes were hard-won and some have yet to come.
In the US, our government (specifically the FDA) still supports a policy that prevents men who have sex with men from donating blood--a hangover from when HIV was perceived to be a "homosexual disease" that would contaminate the donated blood supply and when homosexuality was, and still is, considered a "high-risk" behavior leading to HIV infection. But the US is not alone in its position, , China even bans lesbians from donating blood due to their "high-risk" behaviors.
Moreover, there is still the need for foreign governments to be accountable for their provision of HIV/AIDS drugs and other health policies. Recent news reports have revealed how South Africa and other countries failed to adequately respond to the epidemic at its apex and are just beginning to make up for it now through comprehensive prevention and treatment programs. Moreover, as we know. while the world focused on Africa, HIV/AIDS spread across Asia among sex workers, then their sexual partners and then to families. There isn't a country in the world that has been left untouched by HIV--therefore, every country has a responsibility to have sound policy, adequate resources, and scientifically-based education programs for its people.
So on this World AIDS Day 2008--where the theme is LEAD, EMPOWER, DELIVER--remember to consider how each one of us can follow that mantra and ask our governments to do the same. It's the only way that it's possible that 20 years from now AIDS will no longer be an epidemic around the world and we will have been faithful to honoring the memories of the millions who have died at the hands of this dreaded virus.
Summer Johnson, PhD
