"It's Just a Movie!"

My family has learned not to watch TV shows or movies that depict therapists or social workers, at least not while I'm in the room. Why? Because I tend to rant about how inaccurate the portrayals are, and how they usually involve major ethical breaches. Think about it. There's a litany of examples, from Prince of Tides to What About Bob? to The Bob Newhart Show, where the therapist crosses obvious boundary lines into the realm of ethical misconduct that would surely cause license loss, if not jail time. When I'm done ranting (if anyone's left in the room) usually someone will say "it's just a movie" or "it's good TV."

But it's much more than the obvious ethical breaches I'm ranting about today. There are many more subtle misrepresentations happening "for dramatic effect" on a daily basis. Let's examine two. First: resuscitation. On TV and in movies, patients survive, often without apparent side effects, about two-thirds of the time. In the real world, patients survive about 15% of the time, and usually have cracked ribs or other wear and tear to show for it. So, where's the harm in a little "dramatic license?" Like it or not, people believe what they see in the media. When I sit down with patients and families to discuss Advance Directives and Do Not Resuscitate (DNR) orders, they are usually shocked to hear the realities of resuscitation. For those lucky enough to learn early, ask questions, and get a realistic impression of what resuscitation really entails, this knowledge leads to reconsideration of care wishes in many cases. For those who complete Advance Directives at home, how many of them have an expectation of care skewed by media representations?

My second example: the miraculous recovery. You see it all the time on TV and in the movies. The patient in a coma for years wakes up with no adverse effects. The evening news trumpets the news without once reporting the staggering odds against such a thing. What do these misrepresentations do, overtly or covertly, to the average person's expectations for care? Do they create a level of false hope unsupportable by facts? If so, is that a problem?

I believe they do create false hope, and that it is a problem. Citing the case of Meredith Grey from the TV show Grey's Anatomy, a family chose to maintain their mother on life support. Interestingly, it wasn't until they saw depictions of Terry Shiavo that they were reminded that mother, having seen news stories on that case, had remarked as how she didn't want to be kept alive by machines. Ironic? Sure. TV informed both the decision to prolong, and the decision to withdraw. Dr. Ryan, in that article, suggests that TV is not to blame, asking if you would turn to Law & Order for legal advice? While I appreciate his suggestion that the onus of informing patients about reality lies with the physician and other treating professionals, I still think there is a real issue at hand.

I'm not so naive as to think that TV networks and movie studios will do anything that's not motivated by money, and ethical or realistic portrayals of end of life care don't often draw big crowds of viewership. No one is going to suggest that Hollywood is a hot bed of ethical behavior. Still, is it too much to ask that they acknowledge in some fashion the real-world ethical implications of their actions? How about this: a boilerplate text or voice-over disclaimer at the beginning or end of the program, like on a pack of cigarettes or a pharmaceutical commercial? "Warning: events depicted are purely fictitious and in fact, very few people survive resuscitation and most that do have severe complications." Is that too much to ask?

They say "It's All In The Genes" but do I really want to know?????

The Coriell Personalized Medicine Collaborative
“It’s all in the Genes: Researchers Uncover your Genetic Profile”


Would you really want to know what is down the road for your health?

Genome Profiling Project…..This innovative science takes a sample of my saliva and tests the DNA for certain genes that are associated with specific diseases. Some prominent healthcare institutions are taking part in this groundbreaking project. Healthcare facilities such as Fox Chase Cancer Center, Virtua Health Care, and Cooper Medical Center have thrown their hats in the ring on this one.

I have some concerns about this. Let me tell you about them:

Accuracy: Who says these tests are accurate? Have we done any studies up until now that prove that these tests would be reliable? Would I be worrying unnecessarily about a disease that I may never acquire?

Confidentiality: The Coriell Institute for Medical Research seems to have solved this issue by keeping participants’ medical data in an anonymous form to protect their privacy. There is absolutely no way a person’s identity could be revealed? (heard that one before!)

What if there is no diabetes gene, can I still get diabetes? Or….can I err on the side of probability of not getting it based on the absence of a specific gene?

What does it mean if they find a gene that is “medically actionable”?
According to what I’ve read the genetic makeup that will be revealed will be on that which is “medically actionable”. In other words, if there is no cure for the disease (or treatment) then it will not be revealed to the participant? So I won’t know if I am a potential candidate for Alzheimers?

What about the future? Some experts say that this will be standard at birth and that everyone will have a genome mapped at birth and it will be part of your medical record. Although they also state that physicians will need to have a patient’s permission prior to accessing the data.

It’s a win-win situation according to Dr. Dwyer from Virtua Health Care. Dwyer states that “the physician is more attuned and patients would be more engaged because they now know they have a risk. That combination can change behavior” (or kill a person with worry).

This is obviously not for everyone. I am actually considering becoming a participant in this groundbreaking study. The thing that is holding me back is when I go to hit that key to tell me if I have the genetic makeup to develop diabetes, will I worry myself right into a full blown case of diabetes? My other reservations are that I’m downright frightened that what I may find out may be more than I want to handle at any given moment. Life is hard enough dealing with our every day stressors. Now, knowing that I could develop breast cancer, heart disease, etc. down the road will just add more to my stress level and then I’ll probably just have a massive heart attack and it will be over anyway….so what’s the point?

For more information on this project, go to www.coriell.org.

Mercy Me: No Birth Control for You...

Divine Mercy Care, a new drug store at a Chantilly, Virginia strip mall is putting its faith in an unconventional business plan: No candy. No sodas. And no birth control.

I wonder if they sell Viagra? Or protease inhibitors or reverse transcriptase inhibitors? Or Halloween costumes? The list of possibly offending substances or items can go on and on....I can appreciate that conscience and morals of a health care worker should be considered, so long as patients are being cared for, not overburdened by long drives through rural towns and not being shamed for what someone presumes to be an immoral lifestyle choice.

Alabama's new health plan: "fat tax" or empowerment?

Alabama recently announced a new health plan for state workers. The plan would begin in 2010 and is designed to encourage "at-risk" employees to take control of their health and well being. When the plan is initiated, employees will begin paying $50 a month for health insurance, twice what they pay now. Employees will then be offered a free screen for health risks including high blood pressure, high blood sugar, and body mass index. If this screen finds employees with these risk factors, they will be offered a free doctor's visit, and if they accept they will have their insurance premium reduced to the original $25 a month. If the employee opts not to take the screen or the free doctor's visit if they are found to be at-risk, then they will continue to pay the $50 per month premium.

The state insurance board denies this plan is a "fat-tax," though admits part of the reason for the new plan is that 10% of state employees are at risk for at least one of the screening factors, saying healthy people will cost the state less money (a person with a BMI of 35 or greater costs the state 40% more than a person with a lower BMI). While this plan may be designed to educate employees, is it something that will work? Simply going to a doctor doesn't mean the employee will follow a course of treatment, or that the treatment would be successful. Will the state confirm the person who sought treatment is really taking prescribed medications, or following the doctor's advice on a healthy lifestyle? Opponents claim this plan presumes that obese employees are simply weak willed and does not fully account for people who may also have genes working against them. Others argue that this is simply a ploy to help the state make an extra dollar, but with costs for extra screenings totaling $1.6 million, money may truly not be the main motivator.

This brings up the issue of patient privacy. Under HIPAA, medical information can be released to the employer without patient authorization under extremely limited circumstances, including when health care is given to an employee at the employer's request. In Alabama's proposal, there would not be a violation of privacy since the employer would be requesting the screen and any follow up doctor's visit. Further, HIPAA does not prohibit employers from making employment conditional on the individual authorizing release of medical information to the employer. While potentially humiliating to employees subject to such measures, there is no true violation of privacy here.

The plan also raises the issue of how much an employer can meddle in the life of employees. Some may argue that if these risk factors do not impair the person's ability to do their job then the employer shouldn't care. Some may also feel that this plan coerces employees into seeking medical treatment, but this may also be a wake-up call that some people need to get checked out. While this plan may seem offensive and questionable, it might just work and help people take control of their health. Time will tell if this plan will be successful.

African-American Women, Wombs & History

While recently studying surrogate pregnancies, I was curious about what information I could find about African-American women and surrogacy. I assumed since African-American women in the United States have historically, unwillingly, but sometimes willingly in-a-Sally-Hemmings-kind-of-way, carried their master’s child, that women of color wouldn’t be interested in enslaving their bodies, again as surrogates. Professor Anita Allen comments on this historical surrogacy when she says:, "Southern black mothers were in a sense surrogate mothers because they knowingly gave birth to children understanding that those children would be owned by others." ('The Black Surrogate Mother: The Socio-Economic Struggle for Equality.' 8 Harvard Black Letter Journal. 17, Spring). Additionally, we finally got our bodies back, even from the wives of slaveholders as breast feeders of their children. So, why in the world would we in the twenty-first century, given our history, rent our bodies out for nine months to anyone? Well, this time around there IS one major difference: Compensation.

In the article, “Black Women Giving Birth to White Babies on the Rise,” http://www.emergingminds.org/, it’s reported that black women from Africa, primarily Ghana and Nigeria, are assisting infertile white couples throughout Europe in having a family of their own. These impoverished African surrogates use the money they’ve earned to provide for their own families. But what about African-American women’s participation as surrogate mothers, here in the land of plenty?

In a very well written article published April 2008 in Newsweek www.newsweek.com/id/129594/page/1, authors Lorraine Ali and Raina Kelley interview an African-American woman named Gernisha Myers. Gernisha is not only an African-American, but she also represents one of the largest groups of surrogate mothers in the United States: military wives.Gernisha was looking for a job and saw an ad willing to pay at least $20,000 dollars. This was $10,000 more than what the infamous, Anna Johnson, received. Johnson was hired to be a surrogate mother in the Calvert vs. Johnson case (5 Cal.4th 84, 851 P.2d 776 (1993). Johnson agreed to carry a child for the Calverts using in vitro fertilization. Johnson wanted the courts to declare her as the baby’s mother. However, the court held that the Calverts were the legal parents of the child.

Gernisha was seeking a job that would allow her to stay at home and make money while raising her two boys. As I expected, her immediate family was appalled. Her grandmother was quoted as saying, “Gernisha! We just do not do that in our family.” And her uncle said, “He was disgusted.” However, Myers tuned her family out, believing her primary focus should be on the help she would provide the infertile couple. And of course, there’s the money: “Military wives who do decide to become surrogates can earn more with one pregnancy than their husbands' annual base pay (which ranges for new enlistees from $16,080 to $28,900).”(Ali 2008). When Myers was interviewed for the Newsweek article, she was pregnant with twins for a white couple living in Germany. I guess she got to double her price, from $20,000 to $40,000! Not bad for nine months of work.

I’ve read about a few older African-American women who were surrogates for their daughters. But I supposed as the economy continues to spiral down, there will be more African-American women who won’t be hindered by American History of black women and their bodies, but will be more influenced by, “Is the price right?”

Eugenics or Designer Babies

EUGENICS OR DESIGNER BABIES

In our modern age we have come to a point in time where we can not only decide we when want to have a baby (even after menopause) or how many we want (IVF with selective downsizing or multiple fertilized embryos allowed to go to term), but we now can decide what color eyes (s)he will have, the intelligence level to give him a heads up on others, how tall or short, even the sex.

Taken a step further, we can screen for more than 900+ genetic disorders according to the National Institute of Health. If you so chose, for $89.00 you can do a home test for DNA screening. What was state of the art ten years ago is as common as new reality shows on television. The concern I have with all of this forward movement we have in making genetic selections is in regards to really knowing the future consequences of our actions. I feel we are moving so fast we forget to stop and look at the big picture.

In the United States today, 20% of couples that delay pregnancy for whatever reason will end up with a permanent delay of infertility as the time frame to have their child has past them by. This fact increases the number of couples looking for assistance in having a family when they had planned. Medicine is a business that depends on clients that can pay for the services offered. Many couples have waited to have children until they are secure in their jobs, have money saved up and lifestyle they feel is right for children. Now more than ever before the savings is used to help get the couple pregnant, not just for after the pregnancy. If you have only a few chances to have a baby, and need help from an outside source, you want to make sure you get what you really want. Many people are now looking into genetically designed babies. They are choosing to take the most desired traits between the egg donor and sperm donor (not always the mother and father raising this child) and match them up for a baby with a genetic makeup that is the best they can have. By choosing certain traits over others (blue eyes vs. green) are we telling the world we believe someone with the undesirable traits are not up to our standards. This rings of eugenics, breeding for desirable traits, brought to the forefront during WWII with Nazi Germany.

Genetic counselors are used more and more these days to help couples understand the results of any genetic screenings done either before they get pregnant or after the pregnancy is assured. What we need to keep in mind is the fact any parent is a carrier of at least one recessive gene that can cause illness in future generations. If they were to decide to abort because the fetus has the full mutation, (the disease), the immediate children are free from the illness. This leaves two-thirds of the un-aborted and unaffected children who will be carriers anyway. No one is really “saved” from this mutation, just this next generation. We must also be aware of the fact not every gene needs a matching one from the other parent to cause disease. In rare cases a genetic mutation on the 15th chromosome from dad can cause Prader-Willi Syndrome and the same mutation from mom can cause Angelman’s Syndrome.

A known fact in genetics is the inevitability of our genetic material breaking down over the years. It is why we grow old. As our genetic material breaks down, the chance for mutated genes increases, thus the chance of giving a mutation to an offspring rises with our advancing age. Each one of us carries mutated genes given to us from our parents. Most of the mutations that cause disease are both recessive (need one from mom and one from dad to have the mutation in an offspring) and extremely rare.

As genetic screenings continue, we are learning more and more about the effect it has had over generations. For example carriers of the sickle cell anemia mutation have a natural defense against Malaria, helpful to those living in Malaria ridden regions of the world, not good for offspring of two carriers who have a 50-50 chance of being born with the disease. People alive today who can trace their family trees back to survivors of the Black Plague can rest easy in the knowledge they are highly resistant to the HIV virus. What if genetic testing was available during the middle ages? Would we have still have this resistant genetic material to what has been called the plague of the 21st century?

One positive aspect of genetic testing arises in an unusual situation among Ashkenazi Jews. Screenings for Tay-Sachs and Cystic Fibrosis (very common in this group of people) are done on school aged children. When match making is considered between two people, the anonymous numbers assigned at the screening is called in. If both are carriers, the marriage is discouraged. The Committee for the Prevention of Jewish Genetic Disease has shown the practical results of this voluntary policy, as impressive despite being referred to as eugenic by the New York Times. The argument for this kind of testing is found in the need to think ahead regarding who will care for a child with such a devastating diagnosis. It is not only the physical demands placed on the families but what about the financial burdens placed on society as well. Long term costs could run into the millions. In cases like these, the greater good becomes a question that should be asked by all involved.

Cystic Fibrosis has been virtually eliminated from the Jewish population in the United States. Unfortunately, we have found a link between Cystic Fibrosis and Typhoid. It is only the difference of a few letters in the DNA, but a dramatic difference in diseases. By wiping out one, are we encouraging the other?

There is a famous legal case from 1927 titled Buck vs Bell where a woman was deemed feeble minded, was made a ward of the state living in a state run home, and considered by Justice Holmes of the Supreme Court to be a drain on society as the third generation of a feeble minded family. Carrie Buck was forcibly sterilized after having a daughter believed to be feeble minded also. This case shows the dangers of making decisions without knowing all the facts. As time has shown, Carrie Buck was found to be of sound mind, and her daughter was an honor roll student in school.

Time will allow us to see the consequences of decision we have made or will make in the future. I just hope we can learn from the past as we head into the future.

Just because we can ........

Just because we can does not mean we should.
All too often in the ICU we find ourselves in the difficult position of what to do next. We can save lives. We do it all the time. We have the best physicians, the best nurses and the best technology that is available and we use it to perform miracles. Sometimes though, even with the best care, people are just too ill or too damaged to save. If our charge as medical and nursing professionals is “first do no harm” then the question has to be asked, is giving or continuing medical care in cases where there is no hope of survival not in fact harmful. I would argue that it is. Offering or continuing care when there is no hope for survival is harmful to the patient, their family and the medical and nursing staff caring for them.
Often when a patient is first admitted to the ICU it is not possible to tell whether or not anything can be done to help or improve their prognosis. Tests are needed, and sometimes time itself gives information that can not be gleaned on admission. In these instances the only ethical course to take is one of maximum intervention until the extent of the damage is known. There are times when following initial treatment it becomes apparent that a loosing battle is being fought. However, these are not the patients I wish to discuss here.

Occasionally, especially in the ICU we will receive report on patients being transferred from another facility who are obviously beyond our help, beyond anyones help. Take, for example, the hypothetical case of the 90 +plus year, it is a common story, the patient, Mr X, has been found down at home no one knows how long he has been there. When the EMS arrive they find him unrousable, blue and cheyne stoking (a breathing pattern associated with the end stages of dying). He is intubated and transferred to the nearest hospital. On arrival at the hospital he is scanned and found to have a massive head bleed. As there are no neurosurgical services at the hospital he is transferred to another facility that can offer a higher level of care. His family are contacted and told he is being transferred for further care On arrival there is no family present. On review of the accompanying scans and physical examination of the patient it is quickly apparent that the patient can not be helped, his brain injury is catastrophic, not to mention the lack of oxygen he has suffered for an unknown amount of time before being found and rescued. The decision is made to keep him ventilated and try to keep his heart beating until family arrive. Mr. X’s family arrive at the Unit the following morning, and are told nothing can be done for their father as he is beyond medical help. A Do Not Resuscitate order is requested and staff attempt to talk about comfort care. This is denied, as is all too common there is a family rift and none of the children are willing to make a decision or take charge of the situation.

I ask you is this “do no harm”
Just because we can, does that mean we should? At three separate points in the care of Mr. X, medical futility could have been identified and treatment stopped. Could the EMS have not intubated him? Could the receiving hospital have made a decision that further care was medically futile and extubated him, or could the receiving hospital? Why was his family even asked to make a decision about something that was after all inevitable, based on evidence that was irrefutable? Why were staff asked to care for a patient they could bring no comfort to, could not heal, why was a hospital, already short of beds asked to take a patient for whom they could offer no help in lieu of a patient they could potentially have helped? Why? Although this case is hypothetical the scenario is all too common and is a familiar one to most medical professionals.
The concept of medical futility is not a new one. “The ancient Greek healers suggested that among the goals of medicine [was] the refusal to treat those overmastered by their illness” (Fine, 2000 Fine R. L., 2000, http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1312296 ) Healthcare resources are finite and should be allocated appropriately. Whilst resources are used to care for some one who we can not cure, save or even improve the quality of life for, someone else is going without because there is no hospital bed to accommodate them. Perhaps we should heed the admonition of the Greeks who warned patients “not to ask healers to attempt that which was impossible to medicine, and physicians, that to attempt a futile treatment was to display an ignorance that is allied to madness. (Fine, 2000)

And The Singularity Just Keeps Getting Closer

We've blogged about the Singularity before here and there, thinking it was far off in the future BUT thought-based communication is already being developed: The U.S. Army is developing a technology known as 'synthetic telepathy' that would allow someone to create email or voice mail and send it by thought alone. (Does anyone remember Robert Heinlein's The Moon is a Harsh Mistress?) The concept is based on reading electrical activity in the brain using an EEG (electroencephalograph).

For details and to read on, click here.

More Monkey Business (Chimp Business, to be more accurate)

In a follow-up post to our post earlier today about primates, Brandon Keim of Wired Science asks, "Chimps: Not Human, But Are They People?":

"As a population of West African chimpanzees dwindles to critically endangered levels, scientists are calling for a definition of personhood that includes our close evolutionary cousins.

Just two decades ago, the Ivory Coast boasted a 10,000-strong chimpanzee population, accounting for half of the world's population. According to a new survey, that number has fallen to just a few thousand.

News of such a decline, published today in Current Biology, would be saddening in any species. But should we feel more concern for the chimpanzees than for another animal — as much concern, perhaps, as we might feel for other people?

'They are a people. Non-human, but definitely persons,' said Deborah Fouts, co-director of the Chimpanzee and Human Communication Institute. 'They haven't built a rocket ship to the moon. But we're not that different.'

Fouts is one of a growing number of scientists and ethicists who believe that chimpanzees — as well as orangutans, bonobos and gorillas, a group colloquially known as great apes — ought to be considered people.

It's a controversial position. If being a person requires being human, then chimpanzees, our closest primate relative, are still only 98 percent complete. But if personhood is defined more broadly, chimpanzees may well qualify. They have self-awareness, feelings and high-level cognitive powers. Hardly a month seems to pass without researchers finding evidence of behavior thought to belong solely to humans.

Some even suggest that chimpanzees and other great apes should be granted human rights. So argued advocates for Hiasl, a chimpanzee caught in an Austrian custody battle, and the framers of an ape rights resolution passed by the Spanish parliament. The question of rights is practically thorny — how could a chimp be held responsible for, say, attacking another chimp? — but the fundamental question isn't practical, but rather scientific and ethical."

For the rest of the story, click here.

The truth of the matter

This update of a case came to my attention while perusing the recent journals in dealing with organ transplantation. It is commentary on the journalistic reporting the case of California vs. Roozrokh. It is found in The Hastings Center Report At Law section "Jesting Pilate"-of July-August 2008, p14-15 (www.thehastingscenter.org) by Carl E. Schneider (He is the Chauncey Stillman Professor of Law Professor and Professor of Internal Medicine at the University of Michigan as well as a member of the President's Council on Bioethics) - This case involves a new transplant surgeon who was accused in the New York Times of murder: "Surgeon Accused of Speeding a Death to Get Organs." (http://www.nytimes.co/2008/02/27transplant?_r=1&oref=slogin). The case is one dealing with Donation after Cardiac death (DCD) and has significant warnings and possible chilling implications. The author's point however has to do with what is presented to the public and what is true. In his own investigation of the case he found that there had been a preliminary hearing, a ruling, and a judicial opinion. The surgeon had not been charged with murder but with three felonies, only one of which will be permitted to go to trial: "dependent Adult Abuse...by willfully causing the patient to be placed in a situation in which his health was endangered by the prescription of excessive amounts of morphine and Ativan, and/or by introduction of Betadine into the stomach."(1). This count is much less serious than that of homicide and the prosecutor would only have to show that the surgeon was criminally negligent.

The patient had adrenoleukodystrophy, which damages the nervous and muscular systems. This is a genetic condition. He had been admitted in a coma and his mother gave consent to withdraw life support and made him an organ donor. He was not brain dead. The transplant surgeon in question was not involved in any of these decisions. But the surgeon had apparently never before been involved with DCD cases, nor had any of the hospital staff, nor had the transplant coordinator, the chief of transplant surgery at the institution had never been involved with one, and there was no written of national DCD policy. There was much confusion in the evidence gathering regarding the frequency and dosing of narcotics. There was a preliminary hearing and not a trial where facts are found in discovery and put in evidence.

The author's point is that journalistic reporting of the law is often poor and inaccurate, few journalists have legal training. The law itself is fragmented and difficult to cover. Finally the point is made that most legal events take a long time to sort out. The questions this poses are many as are the lessons- is this murder or a series of mistakes and inexperienced personnel? Is the rush to journalistic judgment appropriate or is it sensationalism to sell newsprint? For ethicists this brings up such issues as ethical oversight of reporting practices, criticism of the editors who do nt insist on fact checking, another instance of self policing that does not work. The bigger question of which is DCD appropriate at all and, if so, where is the national policy that should be followed? It would seem that Donation after Cardiac Death entails lively and active bioethical input.

New Research Ethics Blog

A hearty welcome to Nancy Walton who has just started blogging on research ethics -- Nancy is an RN and PhD, and Associate Director of the School of Nursing at Ryerson University in Toronto. Chris MacDonald, author of the Business Ethics Blog, (who has been busily blogging delightfully about monkey business in the last few days) is also co-piloting the research ethics blog. By way of welcome and introduction, we are cross-posting one of their blog entries today:

Children's Cold Remedies: the Ethics of Doing Research
From Reuters: Don't use cold drugs in kids under 4, industry says

Oral cough and cold medicines sold over the counter should not be used in children younger than 4 years old because of the risk of rare complications linked to inappropriate use, manufacturers said on Tuesday.

The move seems a good one. Maybe it's step 1 towards action on the real issue:

Currently, the medicines are available under decades-old FDA rules that allow over-the-counter products to be sold without clinical trials showing their risks and benefits.

"The bottom line remains the same: that these products have never been proven to work in children," said Diana Zuckerman, president of the National Research Center for Women & Families.

Two quick, relevant, rules of thumb for business ethics, rules that seem entirely relevant here:

1) Information asymmetry matters. If customers don't understand what they're getting, they're not making fully voluntary purchases, and even the most zealous fans of free markets say that markets don't work properly in the absence of reliable information. Parents almost certainly do not know that the safety & efficacy of these products have not necessarily been proven in clinical trials.

2) All the standards get cranked up a notch where kids are concerned.

Original post here.

Monkey Business

Friend and colleague Chris MacDonald of the Business Ethics Blog, is not monkeying around (alright, enough with puns, but I couldn't resist) -- he has provoked a firestorm of discussion about animal rights in his recent postings about a story on monkey waiters in Japan.




The video and news story indicates that the 'monkeys are only allowed to work two hours a day, which is not bad, even if they are only being paid peanuts.'

Fodder for discussion in your bioethics class!

Lori Andrews in Seattle on October 16th

You can hear bioethicist, attorney, and murder mystery novelist Lori Andrews read from her new thriller Immunity on Thursday, October 16, 2008, 7pm, at the University Book Store (University District). Come and be part of the conversation.

The Question of Embryos and Legal Status

What constitutes 'a person' under the law? At first glance, this seems such a simple question; however, the more I think about this, and the more I investigate, I am realizing that there is not a clear answer. There clearly has not been a consensus amongst the legal and scientific communities.

Recently the Los Angeles Times examined the issues surrounding leftover frozen embryos. Many couples in the United States with frozen embryos leftover from fertility treatments are “finding themselves ensnared in a debate about when life begins”. These couples have three choices: discard them, donate them to research or donate them to another couple for potential pregnancy. There are initiatives in several states that seek to protect embryos. One of these initiatives defines a fertilized egg as a person in the state constitution (Colorado). Indiana lawmakers are proposing an allowance for leftover frozen embryos to be adopted for implantation by another couple. New Jersey legislators have proposed allowing unused embryos to become wards of the state, and Georgia and West Virginia are considering legislations that would grant embryos “personhood status”. This is a very slippery slope; for, if the Supreme Court allows these proposals, one would be in a position to say all abortions must stop.

Roe v. Wade is the historic Supreme Court decision overturning a Texas interpretation of abortion law and making abortion legal in the United States. The Roe v. Wade decision held that a woman, with her doctor, could choose abortion in earlier months of pregnancy without restriction based on the right to privacy. At the time of this decision, it was clear that an embryo was not a “person”, or abortion would have been “murder”; thus illegal. In Davis v. Davis the lower court found that “human embryos are not property, and human life begins at conception”. However, the Supreme Court of Tennessee overruled this by saying something quite different, that embryos occupied a special status of “quasi-property”. Most recently, the Oregon Court of Appeals has ordered six frozen embryos be destroyed after ruling they can be treated as personal property in a divorce.

So, in essence, it remains unclear in the scientific world “when life begins”, but in the “legal world” it is quite clear that embryos are not “persons under the law” (yet). In fact, at this time it appears embryos are simply “property”! Did I answer my own question? Embryos are life forms, but not persons?

Will Genetic Engineering Ruin Sports?

I will have to begin in mentioning that I am not a sports nut. I do like to watch the occasional baseball and football game. Despite this, the topic of sports is going to be may main topic. But not just sports in curiosity who will win the next Superbowl, but sports in concern with genetics. Where will the idea of sports go with the introduction (and advancement) of genetic engineering? Will such technology, which has high hopes in enhancing ourselves to be better humans, ruin the very idea of sports? With the playing field be fair? Or will it destroy the very structure of competition? If so, will the law forbid such technology, or forbid any altered child from entering sport?

I'm sure most of our readers have heard of the recent headlines of steroid use in the MLB. The uproar of the use of steroids only sparked more interesting questions when concerning with the future of genetic engineering. People were upset and felt cheated that such athletes took performance drugs to better their game. Can the upset of steroids ban any idea of future genetically altered athletes from entering sports? It is known that steroids have some major side effects that can harm the taker. For a better look, check the ESPN special of steroids: ESPN Special On Steroids


Genetic technology is ever progressing, and every year that passes brings us even closer to the technology of genetic engineering. We already have super mice!; Marathon Mice, Schwarzenegger Mice, and my favorite, Doogie Mice. For a side note, most of what I will be discussing will be in the hypothetical. In other words, there are some concerning issues as to what we will be able to alter in our children's genes. In addition, Im already assuming that such technology is "perfected" so to say. I believe most will agree that such technology in general should not be practiced until all the kinks are well, fixed. I also would like to add that I am assuming that this technology will be widely accessible.

So, if you have the option to choose certain traits for your children; (already taking the precautions to remove any defects and/or diseases), what will you choose? Every parent would want the best for their child. Either it be a trait that the parents believe to be beneficial, i.e. physical appearance, or a trait that is in general beneficial no matter what scenario, prolonged-memory. In addition, you can better befit your child with physical agility, such as strength, or the ability to run fast. This alterations and enhancements do not have to be linked with the parents desire to "create" an athlete, (though this can happen), but such alterations can lead a child to consider such a course. If so, what will the precautions be? At this moment I am going to drift into Lance Armstrong. My point will be seen, I assure you.


Lance Armstrong is a perfect example of a great athlete. He shares a lot of the same attributes that other bicyclist share, but one thing that he does have differently is his unique lactate levels. The average among bicyclists is between 12 and 20u L/Kg. Armstrong's level is maximum 6u L/Kg. (information found on Answers: Armstrong) This means he feels less physical fatigue, allowing him to continue long distances without losing strength. Is this fair to the other players? Or is it just part of the game? Granted, most would agree that though you might have the tools, its how you use it that shows your worth. In any who, would it be wrong of parents to genetically alter their child to have these attributes? Or is it fair for Armstrong only because he got it through chance (chance meaning it accrued with no interference or received it through his parents with no interference). Would you look at Armstrong differently if you knew he received this attribute deliberately through genetic technology? Would you feel that he should be stripped of his awards and banned from the sport if he did. In addition, would you believe that all altered individuals be banned from participating in any sport?

If genetic engineering is "perfected", and is seen as a due course of helping our children, what would happen to the legality of those enhanced. Would the law ban some individuals because they were altered prior to birth? In all honestly, I cant see the law banning this technology entirely (maybe some aspects of enhancement). Im at the moment curious as what will the law do? Will they ban altered athletes entirely, or have a separate league? Or will the law do nothing and allow such individuals to enter. Will this then require other non-enhanced athletes to comply? Athletes are already posthuman cyborgs and we celebrate this. It is likely that greater use of this technology will seep into other aspects of culture, as we begin to embrace more and more enhancements. Sports might soon become peculiar for resisting such developments and, in the meantime, will be placing athletes at greater risk by forcing them to enhance behind closed doors.�??¹ Either way, sports competition will take some dramatic hits and misses as genetic engineering progresses into the future.

There is a novel written by Kevin Joseph called The Champion Maker (2005). The story offers us a fictional look into what might occur if an exceptional athlete was found to be genetically altered. It deals with reaction and attention of the courts.

1: Andy Miah, Engineering Athletes, The Sun News (Myrtle Beach, South Carolina, USA), 18 May 2008.

Gene testing for Breast Cancer: Hype or Hope?

WBP supporter and personable pundit Art Caplan explains in his most recent MSNBC column that biotechnology firms hope to cash in on women’s fear of the disease:

Fear of breast cancer has created a tempting market for companies to sell genetic testing directly to consumers. The disease kills 40,000 people a year in the U.S., with an estimated 212,920 new cases diagnosed in 2007, according to the Mayo Clinic.

It’s no wonder women would want a reliable gauge of their risk. However, American women should be aware that genetic tests for breast cancer are more hype than real hope.

On Wednesday the biotech research company Decode Genetics of Reykjavik, Iceland, announced it will sell a new test for $1,625 that it claims will allow women “to assess their personal risk for the common forms of breast cancer.”

Genetic testing for all sorts of conditions is all the rage these days. Everywhere you turn, some company is urging you to spit in a cup, take some blood or swab your cheek so your DNA can reveal your health risks, know who your long-dead ancestors are, pick the right mate or help you design a diet that is perfect for your genetic makeup. But, “spitomics” has gotten way ahead of genomics.

Sadly, the tests Decode and other companies are offering are more likely to empty family pocketbooks and leave women with a false sense of security than they are to prevent breast cancer. There is simply not enough federal and international regulation in place to determine which tests are accurate or how heredity interacts with lifestyle to create individual risks.

If the Food and Drug Administration and Congress do not rein in the corporate greed that is currently driving the sale of genetic tests for breast cancer and other diseases and conditions, we could soon have an industry that bears an uncanny resemblance to the home mortgage business.

Marketing for genetic tests is already ubiquitous. The television commercials and magazine ads, which ran in Denver, Atlanta and various cities in the Northeast, promise women that cancer does not have to be “inevitable." They also claim that the average woman can reduce her risk of developing cancer through genetic testing.

Myriad Genetics, the Salt Lake City biotechnology company behind the heavy ad push, charges about $3,000 for a complete risk-disposition test. Myriad, which holds a patent on the first breast cancer test, has been taking full advantage of the genetic testing monopoly it enjoyed until Wednesday when Decode entered the market with its new, more generalized test. To date, Myriad has been very tough about enforcing the patent, even though medical centers in the United States and other countries say they could do the same testing for a much lower cost.

Only small fraction would benefit
In reality, the numbers about detectable risk don’t really back up Myriad’s ad claims.

Of the more than 200,000 new breast cancer cases, only about 20,000 seem to be connected to the BRCA1 and BRCA2 genes — the genes most closely linked to the inherited form of the disease that Myriad’s test can detect. For women without a family history of the disease, perhaps 1 percent would benefit from the test.

On one hand, it would seem to make sense to seek out genetic testing to avoid becoming a breast cancer statistic. Or does it?

Contrary to the marketing messages, only women who have a strong family history of breast cancer — two or more parents, grandparents or siblings who have developed the disease — need to talk to their doctor or a genetic counselor about the value of any form of genetic testing.

Decode’s newer test is not really accurate enough or based on a large enough sample of women to accurately predict much about an individual woman’s chance of getting breast cancer.

If you are worried about your risk of getting the disease, or are thinking about getting a genetic test done for any other reason, talk with your doctor or a genetic counselor who can determine whether your family history justifies the expense. You may be surprised to find that you can make changes in lifestyle and monitoring your own health that can reduce your risk without testing.

The genetic revolution holds much promise for improving our health. Currently, profit and market advantage are playing the key roles in shaping how genetic testing is evolving. These are not the right navigation tools to help women at risk of breast cancer — or the rest of us — capture that promise.

Arthur Caplan, Ph.D., is director of the Center for Bioethics at the University of Pennsylvania.

Original article can be found here.

Are you a Bully?

Now it is time to end the silence: There is a hidden culture of girls’ aggression in which bullying is epidemic, distinctive and destructive. It is not marked by the direct physical and verbal behavior that is primarily the province of boys. Our culture refuses girls access to open conflict, and it forces their aggression into nonphysical, indirect and covert forms. Girls use backbiting, exclusion, rumors, name-calling, and manipulation to inflict psychological pain on targeted victims. Unlike boys, who tend to bully acquaintances or strangers, girls frequently attack within tightly knit networks of friends, making aggression harder to identify and intensify the damage to the victims.

The book Odd Girl Out: the Hidden Culture of Aggression in Girls by Rachel Simmons describes the hidden culture of aggression, where girls fight with body language and relationships instead of fists and knives. In this world, friendship is a weapon, and the sting of a shout pales in comparison to a day of someone’s silence. There is no gesture more devastating than the back turning away. Beneath a chorus of voices, one girl glares at another, then smiles silently at her friend. The next day a ringleader passes around a secret petition asking girls to outline the reasons they hate the targeted girl. The day after that, the outcast sits silently next to the boys in class, head lowered, and shoulders slumped forward. The damage is neat and quiet, the perpetrator and victim invisible.

Students and parents expect schools to be safe, where students can learn and teachers can teach in a warm and welcoming place, free from bullying, intolerance and violence. Teachers and support staff have the right to a safe and harassment-free workplace under their collective agreements. Students however have no special protection and must rely upon adults to keep them safe. As adults and parents, we have a responsibility to ensure incidents of bullying are reported and action is taken. If nothing is done, the problem will likely get worse.

Researchers have found signs of an apparent connection between bullying and suicide in children, according to a new review of studies from 13 countries. Nevertheless, there is no definitive evidence bullying makes kids more likely to kill themselves. Still, “once we see there’s an association, we can act on it and try to prevent it,” said review lead author Dr. Young-Shin Kim, an assistant professor at Yale University School of Medicine’s Child Study Center. According to international studies, bullying is common and affects anywhere from 9-54% of children. In the United States, many have blamed bullying for spurring acts of violence, including the Columbine High School massacre.

Lori Drew of St. Louis, MO., allegedly helped create a false-identity My Space account to contact Megan Meier-13 years old, who thought she was chatting with a 16-year-old boy named Josh Evans. Josh didn’t exist. Drew was talking to Megan via the Internet to find out what Megan was saying about her daughter, who was a former friend. Megan hung herself at home in October 2006 after receiving Drew’s cruel messages, including one stating the world would be better off without her. This is an extremely rare case of an adult woman posing as a teenage boy but the cyber bullying is very real and very hurtful, notes CBS technology analyst Larry Magid (2008). “About one-third of teens say they have been bullied or harassed online and though suicide is rare, there are plenty of cases where it has led to depression and extreme anxiety”.

Public awareness of bullying has grown in recent years, propelled by the tragedies of youth gun violence. The national conversation on bullying has trained its spotlight mostly on boys and their aggression. Defining bullying in the narrowest of terms, it has focused entirely on physical and direct acts of violence. The aggression of girls, often hidden, indirect, and nonphysical, has gone unexplored. It has not even been called aggression, but instead “what girls do.” Yet women of every age know about it. Nearly all of us have been bystanders, victims or bullies. So many have suffered quietly and tried to forget. Indeed, this has long been one of girlhood’s dark, dirty secrets as described by Rachel Simmons. Nearly every woman and girl has a story. It is time to break the silence and change the story.

What greater gift can we give girls than the ability to speak their truths and honor the truths of their peers? In a world prepared to value all of girls’ feelings and not just some, girls will enjoy the exhilarating freedom of honesty in relationships. They will live without the crippling fear of abandonment. It is my hope that as they, and any woman who has ever been the odd girl out, will step forward and not be a victim but instead an example to others --- By being true to themselves and supporting each other our young girls can become positive role models and leaders.

I See What You're Saying

In her NY Times article The Dance Before the Diagnosis, Dr. Pauline Chen reports that when there's bad news to deliver, she, like other doctors, has "evaded the probing looks of patients and their families..." and that doctors can be "woefully evasive in talking with their patients."

In trying to protect patients from bad news, doctors may be misjudging them and their ability to grasp their predicamentt - unintentionally making things worse. When verbal communication may be inadequate or vague, Dr, Chen posits that our bodies may tell all regardless. She points out that research in nonverbal communication is thin, in part because of the challenge of measuring and assessing nonverbal behavior. But based on her personal experiences and the anecdotes of colleagues, Dr. Chen believes that patients get the message no matter what isn't said. The son of a patient with pancreatic cancer illustrates her point. While the doctors had yet to share the pathology report with him, he "knew" his father's tumor was cancerous because "they could not look him in the eye in those hours before" they actually told him the news.

Almost 30 years ago, Robin Dimatteo and Angelo Taranta published their research on nonverbal communication and physician-patient rapport in the journal Professional Psychology (Vol.10(4), Aug. 1979, 540-547). Their results demonstrated that rapport depends on two things: the doctor's ability to read the patient's nonverbal cues and the doctor's ability to intentionally communicate affect through nonverbal channels. Yet, three decades later, Dr. Chen indicates that physicians still aren't talking the nonverbal talk. Studies haved repeatedly shown that effective communication skills can be learned - any trial attorney knows the value of effective nonverbal communication. The Association of Medical Colleges and the Accreditation Council of Graduate Medical Education have emphasized interpersonal communication skills as one of the six core competancies taught in medical schools since 2002.

Might I dare to suggest a few excellent litigators as helpful adjuncts?

Field of Dreams: Developing Rules for Artificial Wombs

In 1989 the movie Field of Dreams promised, "if you build it, they will come". And come they did: all those hoping to have their faith in something bigger than them, restored. For the title character, Ray Kinsella, the field gave him the opportunity to see his father, again and create a relationship the two never had.

I'm reminded of that movie as I think about the development of an artificial womb. 'If you build it, they will come". They, being childless couples, in hopes of a bringing their baby into the world, the fulfillment of their dreams. But along with the honest and pure of heart will come those less chaste. As in the movie, the field attracted plenty of gawkers and those who just wanted to be part of something special. But should they have been allowed to partake in something so dear? That will be the question when the A/W is finally developed. Who should be allowed to utilize something so sacred? For afterall, what happened to the 'mystery of childbirth'? Should prior constraints be placed on this technology so, in advance of it's 'birth' all the players know the rules? In the movie, if a player walked off the field they forfeited their right to continue playing. For them, the only thing that would entice them to leave the confines of the field was saving a life.

There will be pressure on those entrusted to manage the artificial wombs to allow fetuses to grow, not specifically for a healthy child who will live a full life, but for a child who will provide spare parts for children who are already disabled in some fashion. And there will be pressure to allow that womb to provide safe haven for women who are simply not inclinded to endure the discomfort, physically and socially, of pregnancy. Shall they be allowed to utilize this technology?
We can't simply 'build it and they will come". That's not responsible when you consider lives are at stake. This field of dreams needs some rules before the game can begin.

Benita Zahn

SFGate: Development of Articial Wombs

'Silicon womb' to begin fertility trials

Creating Awareness for Extremely Drug Resistant Tuberculosis (XDR-TB)

Last year, you may remember the stories and the blog entries the about Robert Daniels, the American lawyer, who was quarantined because of XDR-TB, but the problem goes far beyond the geographical boundaries of the US -- it is a new and deadly form of tuberculosis that is threatening to become a global pandemic. In an effort to stop the disease and spread the story, James Nachtwey illustrates the problem with photographs of extremely drug-resistant tuberculosis and people around the world to think about public health and act to stop the disease.



To learn more and join the global conversation, watch the video clip above and then click here.