Friday, October 30, 2009

Walking the Fine Line of Obligation

Imagine this hypothetical scenario:

You are a doctor, and one of your patients falls gravely ill; it is unlikely they will recover. However, you are aware of an experimental clinical trial taking place in your hospital testing a new drug which may be your patient's last best hope for survival, at least temporarily. While to place your patient in the trial would constitute a violation of the enrollment criteria of the trial, by doing so, you may save their life. What do you do?

If you are like 90 percent of clinicians surveyed in a recent survey by the Hastings Center, you may bend the restrictions to let your patient in. And why not? He or she has nothing to lose and everything to gain by participation in this trial. Where this becomes a sticky area is when one considers not how this course of action affects the individuals in the trial but how it affects the trial itself. Unhealthy patients, patients with a history of substance abuse, patients with chronic conditions, all of these have the potential to skew the results of drug tests or, by demonstrating catastrophic effects associated with their condition and not the drug, shut down trials on what would otherwise be a significantly less harmful drug.

The obligation to help people on an individual basis is a strong one, and part of the core of the medical profession. This is complicated, however, by the obligation posed by bioethics to serve the greater good. While a patient's continuing survival may hinge on access to an experimental drug, the survival of many more may hinge on that drug clearing the hurdles of clinical trials and becoming widely available. On the other hand, wouldn't doctors widely denying their patients access to that which might save their life be a more worrisome situation? The question is not one easily resolved.

Relevant Sites:
New York Times - Bending the Rules of Clinical Trials
The Hastings Center - Competing Commitments in Clinical Trials

Monday, October 26, 2009

"Not Dead Yet"

Most of the time when I think of or see a severely disabled person, I feel sorry for them when I think about how different his or her life must be from mine. I think of all the parts of life that they are missing out on and how unhappy I would be if I couldn’t run or think or be completely independent. Although I would never advocated for killing a baby with a disability once it is born, I could see where parents or bioethicists like Peter Singer were coming from when they talked about the mercy killing of newborns; maybe the child would have just been happier if he or she never had to deal with the difficulties of a disability. However, after reading “Unspeakable Conversations” by Harriet McBryde Johnson, my opinion changed completely.
Ms. Johnson, who was born with a neuromuscular disease, would have been one of the babies that Peter Singer would have wanted to kill. Forever confined to a motorized wheelchair and unable to perform many basic functions on her own, Singer would have wanted to spare her a “life of misery.” But, as I discovered after reading “Unspeakable Conversations,” she was far from living a miserable life. She was a successful lawyer and activist for others with disabilities. She found it a “great sensual pleasure to zoom by power chair on [Charleston’s] delicious muggy streets.” She also explains how the public “tend[s] to underestimate the quality of life of disabled people.” I would definitely include myself in this public. But after reading about the life a disabled woman who did so much and was so happy with her life, I have a different view on cases like Ashley’s Treatment or people with disabilities in general. A disability is not a reason to pity someone, for, as Ms. Johnson said “the presence or absence of a disability doesn’t predict the quality of life.” Even though it’s hard for me to see Harriet Johnson’s perspective and her reasons for being happy when my life is so different, I believe her when she says that she enjoys her life. And if there is a way to enjoy life, then it should be lived.

Article Relevant to my Post:
Johnson, Harriet McBryde. "Unspeakable Conversations." New York Times. 16 February 2003. http://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html?scp=1&sq=unspeakable%20conversations&st=cse&pagewanted=10

Should Donators Make a Profit, Too?

Stem cells have aroused a great deal of controversy over the past years.  Questions have been raised about whether or not cloning is appropriate and which stem cells are ethical to use.  Aside from the question regarding their usage, there is also conflict surrounding the benefits that come from the use of stem cells. 

When people donate embryos to research for differentiating into stem cells  they get some sort of payment.  This payment usually covers travel expenses, etc. and does not go much beyond that.  Conflicts arise when something is produced in the research of those stem cells and it is commercialized.  There would now be a profit to be made from the originally donated embryos.  This could be a huge market because of stem cell research now holding the power to create possible treatments for diseases such as Alzheimer’s and cancer.  The questions are: is it appropriate for the donors of the embryos to receive part of this profit?  Should a specific percentage be set up in advance in the occurrence of a profit?  How much money is too much? 

I think it is only acceptable for the contributor to receive part of the profit if the agreement had been made before the embryos were donated.  It would be unfair to give the embryos and then  to suddenly decide to become involved again once a profit was recognized.  There would have to be a constant connection (at minimum in the form of a contract stating what money would be owed).  For example, when people were donating to the human genome project, there was a huge conflict when patents were made for DNA sequences.  There were issues because individuals felt that they had rights to part of this patent since it was discovered using their donated genes.  It would also be difficult to decide on an appropriate percentage of the profit for the donator to receive.  It would not be a conflict when dealing with a small profit, but when the profit reaches, lets say millions of dollars, and the originally predicted small percentage of this profit is now a huge sum of money, it would become a problem.  Offering the possibility of such a large sum of money could skew the types of people who donate embryos and might draw in people who are only interested in the money (this would border on coercion).   Those individuals with less money may begin to feel obligated to make such donations in order to earn a living, and the donation may not really occur willingly.  It would be difficult to determine what amount of money is considered “too much.” 


References:

http://www.scribd.com/doc/12790728/Stem-Cell-Research-For-the-Benefit-of-Today-and-Tomorrow

http://papers.ssrn.com/sol3/papers.cfm?abstract_id=740804


World’s Fastest Man… With No Legs?

Oscar Pistorius, a South African sprinter, has personal records of 46.34 for the 400meters, 21.58 for the 200meters, and 10.91 for the 100meters. These times all stack up against the best in the world, even if they are not medal worthy at the Olympics. What is truly amazing about Oscar is that he runs without lower legs and uses special prosthetic legs called “Cheetahs”. He was born without fibulas and with other defects in his feet, so his legs were amputated below the knee at 11 months old. Given his personal records in the short sprints, Oscar could easily win Olympic medals in the Paralympics, however, his recent goal was to be able to compete in the 2008 Beijing Olympic Games as an able-bodied athlete and not in the Paralympics.

To achieve this goal, Pistorius petitioned the International Association of Athletics Federation, the governing body in track and field, to decide whether or not he could compete. The main objective was to decide whether or not his prosthetics gave him an unfair advantage over able-bodied athletes. Biomechanical tests revealed that the “Cheetah” prostheses resulted in “only about 80 percent of the energy absorbed in each stride, while a natural leg returns up to 240 percent” (Longman 2). Researchers also disproved the belief that his prosthetic legs would provide an extended stride length beyond a normal stride by analyzing gait kinematics that revealed a normal stride pattern and length. In addition, kinematic analysis demonstrated that it takes Pistorius about 30meters longer than able-bodied athletes to get up to full speed. In short sprints, initial acceleration to reach maximum speed is crucial for performance.

Despite the research that demonstrated Pistorius did not have an unfair biomechanical advantage in using the “Cheetahs,” the debate did not diminish. Even though the IAAF ruled that he could not compete in the Olympics, the Court of Arbitration for Sport overruled this decision on May 16, 2008. These two rulings reflect the two sides of the argument, with prosthetics lower legs, Pistorius doesn’t have the same lactic acid that reduces performance as other runners. In addition, the Cheetahs do not require the same amount of energy to maintain top end speed, Gert-Peter Bruggemann of the German Sport University in Cologne looked into Pistorius situation on behalf of the IAAF. He found that he expended 25% less energy than able-bodied athletes running at the same speed and that "from the prosthetic blade is close to three times higher than with the human ankle joint in maximum sprinting” (qtd in Espn’s IAAF Rules…). So what should be done? Obviously the answer to whether or not he has an advantage is ambiguous depending on the biomechanical, mechanical, or physiological perspective, but this type of situation is becoming more and more prevalent; as biotechnology improves, so do the extents to which humans are aided by technology.


Sources relevant to my post:
Associated Press. "IAAF rules Pistorius' prosthetics give him unfair advantage." ESPN. 14 Jan. 2008. Web. 24 Oct. 2009.

Longman, Jere. "An Amputee Sprinter: Is He Disabled or Too-Abled?" The New York Times. 15 May 2007. Web. 24 Oct. 2009.

Saturday, October 24, 2009

The Future of Bioethics

Even though bioethics is a rather new field, there is already debate as to which course it should take in the future. In a recent speech by Zeke Emanuel, a leading scholar in the bioethics field, Emanuel argued that for bioethics to be successful in the future there would have to be a much greater focus on collecting and interpreting data because of the current lack of an empirical foundation for which to base their normative claims. While some bioethicists may agree with Emanuel’s desire for a shift in focus towards data, Arthur Caplan is not among them. While Caplan acknowledges that there needs to be more data for bioethics to be successful moving forward, he refutes that there needs to be a shift towards data collection. Caplan argues that bioethics should continue to be based upon history and past cases. He also states that bioethicists must remain in public places so that they can shape policies with coherent arguments based upon that data available to them.

While both make good arguments, I tend to agree more with Caplan. Often there are no clear-cut right answers in bioethics. As such, people make arguments based upon the best available data and past history. Therefore, while more and superior data would help bioethicists support their normative claims, data, as Caplan argues, will never be able to fully supplant the rational arguments for or against a treatment because “for every ethical problem for which sufficient data exists to point toward an answer a hundred blossom for which the data don't.” For example, Ashley was the first “pillow angel” to go forward with estrogen treatment, a hysterectomy, and a mastectomy. There was no specific data (Gunther even admits that they didn’t really know the risks going into the treatment) directing the ethics board in their decision, it was only their moral arguments based upon history and values. Therefore, while more data helps improve bioethics in certain areas, future bioethicists should continue to go to bioethics programs which teach them how to draw from data, history, and their own values in determining if the issues at hand are ethical or not.

Skinny Bitch



I was a bit hesitant as I opened this book by Rory Freedman and Kim Barnouin, two former models who turned into self-taught nutrition experts. I didn’t expect to learn much from it. “I’ll read it for fun since Kathy recommended it.” I thought. And then I was amazed by its clarity and convincing arguments.
What interested me is the authors’ study of others’ research on the way we consume food today. Never before have human beings been exposed to so many food choices. We can buy large chunks of meat or fish from the supermarket at a considerably low price. However, a few thousand years ago in the ancient world, people regarded meat eating as an extravagant experience in life. We eat more and move less. The excess energy just accumulates and causes obesity all around the world. However, this is not the end of the story.
The media and all sorts of experts make it sound as if we need to have a “balanced” diet that includes meat, vegetables, dairy, grain, etc. The book reveals another side of the story: half of all antibiotics made in the US are administered to farm animals. Therefore while you eat a piece of chicken, you also take in “benzene hexachloride (BHC), chlordane, DDT, dieldrin, dioxin, heptachlor, HCB, and lindane”. It’s the same case for pesticides, steroids, and hormones. And a piece of fish also contains high levels of mercury and other pollutants accumulated through the food chain that can be well absorbed by human body. Moreover, as most of the meat we purchase is frozen, we never get to know if the animal were sick or if the meat is fresh or not. There are some unbelievable data in the book that might make you draw a parallel between eating meat and committing suicide.
The book is engrossing in the way that it analyzes each kind of food (including dairy and egg) that we think is indispensable in our life, and proves how it actually harms our body based on solid data. After reading the book I found it convinces people to be vegan instead of teaching them tactics on losing weight. Beware! If you are tempted to read it, think carefully because you might be convinced so much that you decide to become a vegan. At least I tried that for a month after reading, but soon I went back to being omnivorous because I can’t resist the temptation of homemade authentic Chinese food.

Thanks to:
Freedman, Rory and Barnouin, Kim. Skinny Bitch. Running Press. 2005.

Friday, October 23, 2009

Truly A Monster Study

An experiment performed in 1939 by Wendell Johnson has been nicknamed “The Monster Study” due to the horrific procedure involved and complete absence of any form of ethical experimentation. In order to test the effects of speech therapy, Johnson and one of his graduate students Mary Tudor collected 22 orphans to test. They divided the orphans into two groups: one that would be praised for their speech fluency and another group that would receive negative therapy. In this group therapy, the orphans would be told they had severe stuttering problems and that they mispronounced almost every word. Tudor attempted to belittle the children and make them increasingly self-conscious of their “problem”. Many of the orphans involved in the study had no stuttering problems whatsoever. One group of non-stutterers was told that they had the beginnings of a speech problem and that if they could not talk correctly, they should not talk at all.
The emotional abuse of these clear speaking children manifested itself into a complete reluctance to speak and increased self-consciousness. These psychological scares often have proven to be life-long. One orphan Norma Jean Pugh was “regarded as a misfit after she developed a stutter…she now lives as a recluse” (www.psych.stanford.edu). This is just one example of how unethical experiments can cause a huge impact on the lives of the subjects. Although an experiment that lasts only a week seems harmless, the damaging effects can sometimes never be erased. Even though there were not clear-cut ethical laws in place, I am extremely shocked that at the most basic human level, no one stepped in. A study on orphan children already appears inhumane. I am constantly appalled at the lack of heart science continues to demonstrate to the world. It is this concept that makes me doubt further advancement in technologies and genetic modification.

Thanks to:
http://www-psych.stanford.edu/~bigopp/stutter2.html
http://www.ahrp.org/infomail/03/07/11b.php

Tuesday, October 20, 2009

Protect the Body or Let It Suffer?

My dad always tells me to not use anti-bacterial lotions or hand soaps because it makes my immune system weaker. How can something that is suppose to protect me from becoming sick actually end up making me get sick in the long run?

With the advancement of new medicines and bacteria killing solutions, human bodies are suffering. When babies are born they often get routine vaccinations, one of which is acetaminophen, or better known as Tylenol. The drug prevents people from getting a fever and for a fever to become so severe that it can cause seizures. A recent study that has taken place in Czech has said that due to the vaccine, it is making other vaccines less potent. Since fever is part of an immune response, when the vaccine tries to reduce the fever, it results in not letting the body create the appropriate amount of antibodies.

450 children were divided up into two groups. One group received acetaminophen while the other did not. The group that did not receive the shots got more fevers, but only 1% of those kids had a fever above 103 degrees. "The group of children that did receive the shot however had “significantly lower” levels of antibodies against pneumococcus, Hib, tetanus, and whooping cough." The Czech has not officially concluded anything from this study except for that acetaminophen should only be given when necessary.

What I take away from this study is that the advances we are making in the medical field are beneficial but not in all cases. Nowadays, people are hit harder by illnesses like the flu or the common cold. We are protected from germs as soon as we come out of the womb, and because of that, our bodies suffer because they are not probably prepared to tackle these things with the appropriate antibodies. Years ago, before we had Purell that could kill 99.9% of germs on the spot, little kids would roll around in the dirt, not wash their hands, and no one would worry about anything. Now that times have changed, we are all so weary of becoming sick and because of that we do anything to instantly protect ourselves instead of thinking about what our bodies will benefit from in the long run. So now when I get a headache, I’m not quick to take Tylenol. And when I become sick, antibiotics are never the first thought. Allowing my body to suffer may be uncomfortable for the time being but I know I’m protecting it in the long run.


resource-http://www.nytimes.com/2009/10/20/health/20glob.html?_r=1&ref=health

Monday, October 19, 2009

Forgetting Pain, Forgetting Humanity

A few months ago I watched a few segments of Charlie Kaufman’s “Eternal Sunshine of the Spotless Mind.” While I only saw a few snippets of the film, the storyline was out of the ordinary, and certainly succeeded in catching my attention. In this film, the main character Joel (played by Jim Carrey) falls in love with a young lady. After sharing many wonderful memories, they have a harsh break up. Soon after, Joel gets an official-looking notification that alerts him that his ex-girlfriend erased all her memories of him via a form of selective memory erasure, and that it would be greatly appreciated if he refrained from causing any confusion by re-entering her life. He then proceeded to have his own memories erased, but, in the middle of the memory warping procedure, he decided that he did not want to forget about his girlfriend, because even though the painful memories would be erased, all the tender and happy memories would pass away too.

While this was a fictional story, it certainly made me curious. With the current level of research, the possibility of erasing memories may be nearer than we may think. There are already drugs that erase or numb bad memories, and physicians are learning more about the brain each day. So, if someone could select certain memories to erase, would that be ethical? I think that one would have to be extremely cautious when deciding to have parts of his memory erased. While there could be potential benefit for people who have experienced truly traumatic experiences, mind erasure could be used to avoid all sorts of pain, and could seriously alter the mindset of the general public.

Perhaps in extreme cases where people have witnessed gruesome murders or been in a grisly war, these people could be treated with a form of selective memory erasure. In more general terms, if someone begins to experience severe mental distress, that does not appear to decrease with a substantial amount of time, and that is a result of a horrific memory, erasing traumatizing memories may be a legitimate option.

While these extreme cases seem to justify the use of memory erasure in select cases, the allowance of selective memory erasure would have to be treated with the utmost caution. Consider the situation where memory erasure procedures do not have any health risks. This procedure would have to be very limited and available to only those with severe mental disturbance. Otherwise, people may take advantage of the procedure or drug that enables this erasure and may harm or manipulate others, and the victims will have no idea what happened to them. In society, chaos may ensue when some people have no memory of a certain event, while others do. If this procedure is abused, in an extreme case, people will begin to deny certain events, and accuse others of lying all because they do not have the same memories. For example, many people were severely hurt and traumatized by the terrorist attacks on September 11. What would happen if some people had this lasting memory of the attacks, while others have no clue and deny its occurrence?

In terms of humanity and character, what would happen if someone turned to memory erasure after every sad or harmful event? People would lose their humanity and feeling. Living through sad or hurtful events or situations is indeed painful, but it puts life into perspective. Knowing sadness leads people to understand how good goodness is via juxtaposition. And knowing hurt helps people to learn not to hurt, but rather to appreciate. Hard times give us the opportunity to respond to these hard times in a dignified way, which, as a result, shapes good character. Of course it is easy for people to be “good” when nothing is bothering them, but true character is revealed and seasoned through one’s response to trying situations. So, erasing every little harmful, sad, or upsetting memory would compromise the character of the individual.

While selective memory erasure could undoubtedly relieve severely disturbed individuals of painful and haunting memories, it also has the potential to induce mass chaos and dehumanization. Therefore, I think that mind erasing procedures should be strictly limited to those in extreme torment—such as disturbed war veterans, or people who witnessed particularly gruesome, traumatizing, and mind altering events.

Sources:

http://www.jimcarreyonline.com/movies/eternalsunshine.html?p=2#about

http://www.newscientist.com/article/dn16893-drugfree-memory-erasure-could-lead-to-spotless-minds.html

To assist or not to assist: that is the question.

In the state of Montana, courts may soon recognize Montana as the first state in the United States to advocate assisted suicide as a “protected right under a state constitution.”

Robert Baxter, a 76-year-old truck driver from Montana, recently died from lymphocytic leukemia, but during the past year, he stubbornly fought for “the right to die with help from his doctor,” hoping to somehow bring about a quicker end to his agony.

Instead, patients much like Mr. Baxter, particularly those with terminal illnesses, continue to suffer endlessly even though no available treatment to relieve them of their pain is in sight.

As the ones experiencing every acute pain, patients should be the ones deciding how they want to live or die. Who are we as outsiders to judge whether or not they have the right to die and escape the pain? The rights of patients like Mr. Baxter need to be protected and even expanded; it is our responsibility to ensure that the patients are making the most of what little time they have left, and if staying alive only hurts the patients more, then perhaps death is the better option. If life is too painful and agonizing for them, why not ease their suffering and fulfill their wishes?

Ms. Tucker, director of legal affairs for a national group advocating the rights of terminally ill patients, has the right notion when she notes, “It’s about empowering patients and giving them the right to decide when they have suffered enough.”

Source: http://www.nytimes.com/2009/09/01/us/01montana.html?_r=1

The Stanford Prison Experiment

The Stanford Prison Experiment, conducted in 1971 in the basement of Stanford's psychology department, is an controversial psychological study involving human experimentation. In the study Dr. Philip Zimbardo selected a number of students that he considered to be "good apples." They had good grades, came from stable family situations, and had no previous record of violence. Within the experiment he set up a mock prison in which he designated some of the volunteers as prisoners and some of the volunteers as guards. He told them to fully assume their roles and make the prison run as effectively as possible. Within six days of the commencement the experiment had to be shut down. In assuming their roles, these "good apples" and classmates began to abuse each other. The guards acted sadistically towards the prisoners and the prisoners became distressed and anti social. The guards had begun to brutally beat the prisoners.
This psychological experiment had unforeseen consequences. I do not think that anyone would have predicted that such a sadistic outcome would have occurred. Zimbardo, a sociologist, used the experiment to demonstrate that 'evil' can arise more frequently out of situation rather than existing innately. By choosing the 'good apples' and proving that these people could be corrupted, he demonstrated the power of a situation to dictate outcomes and the inability of one's personality or morals to prevail. But was the experiment wrong? I do not think so. The aim of Zimbardo's experiment was to demonstrate that situations dictate outcomes. He probably foresaw and was hoping that these "good apples" would behave poorly. The extent to which this happened was obviously surprising and scarred many good people, but the data from the experiment outweighs the bad effects. From a sociological lens the experiment proved that situations are just as powerful as morals. But extension of this fact creates important advancements in society. The Stanford Prison Experiment reached the public eye most notably when prisoners were abused at Abu Graib prison a few years ago. Many wanted to blame only the guards for what happened, but we can see that the situation dictated, to some extent, what happened. The way that the Stanford Prison Experiment helped is that it demonstrated a situation that produced bad results. Recognizing that a situation can produce bad results means that one can change the conditions and significantly lessen the chances of the occurrence of 'evil.' What happened at Abu Graib prison was unfortunate and embarrassing for the US Army and attempting to reform prisons or even the layout of the army could help to reduce incidents like this. It is even possible to reduce the chances of these bad acts simply by informing people of the power of situations. In this situation knowledge is power. If people can understand the power a situation could have over them then they are more likely to understand how to combat it. In the case of the Stanford Prison Experiment the knowledge acquired was worth the evil that occurred in that prison in 1971. It was knowledge that needed to be uncovered to prevent future, more heinous crimes from being committed.

Saturday, October 17, 2009

Fighting Obesity: Are Drugs the Answer?

There are currently about three dozen different obesity drugs under development and three others that are vying for FDA approval. These are in addition to the many anti-obesity drugs that are either on the market now or have been tried in the past. None so far have proven satisfactory.

Anti-obesity drugs fall into both the “enhancement” and the “therapy” categories. They provide cosmetic benefits, just as plastic surgery does, as well as medical benefits.

The questions that arise for me are: what are the risks? And how will widespread use of these drugs influence society as a whole? Anti-obesity drugs in the past have been shown to have little benefit, and some have had considerable risks.

However, even if the new drugs are safer for the patient than the ones in the past, their use may pose risks to society. At the risk of sounding like Caplan in his argument regarding Ashley’s Treatment, I would advocate greater public awareness regarding healthy lifestyles over the use of medications. Even if the obesity drugs do work better than the ones in the past, they will not allow patients to become “healthy” without some effort on their own part to change their lifestyles. Thus, whether society condones the use of anti-obesity drugs or not, attitudes toward healthy living will have to change.

Another risk posed by the widespread use of obesity drugs involves potential “off-label” and abusive uses of the drugs. In a society such as that of the US today where “thinness” is idolized and obsession with weight and body image is rampant, I fear that demand for anti-obesity drugs will come not just from those who are obese but also from those who simply want to “lose a little weight.”

At this point, the anti-obesity drugs will cross the line from being “therapy” to being “enhancement” and the endless road to trying to achieve “perfection” will begin.

Related links:

"Medicine's Elusive Goal: A Safe Weight-Loss Drug." NYTimes.
http://www.nytimes.com/2009/10/17/business/17obesity.html?_r=1&ref=health

Cheating Death

We need oxygen to live, but it turns out that we also need it to die.

When death from oxygen deprivation occurs due to blood loss or organ destruction, some oxygen is present in the body, and it is this trace amount that allows the chemical reactions within our cells to occur, resulting ultimately in death.

What if there were no oxygen? What if something like, say, hydrogen sulfide took its place in the body? What would total oxygen deprivation do to a living organism?

Apparently, according to a new series of tests by Mark Roth, a form of suspended animation. Some oxygen leads to death, but no oxygen at all leads to nearly frozen life. In small animals (fish embryos, fruit flies, and rats), Roth has been able to drain their oxygen to 0.1 percent and induce a state of biostasis. What's more, he's been able to bring them out of it with no clear detrimental effects; they simply "pick up where they left off" (qtd. in CNN). While he has yet to be able to reproduce the effects of his experiment in larger animals, specifically pigs, Roth is continuing to work to develop his research for use in emergency medical and military situations.

The implications of the results of this research are astounding. The possibility of nearly unlimited time in treating patients in critical condition is one that cannot be passed up. However, the implications of the research itself may give pause on further reflection. Clinical trials for such a treatment stand to be intensely dangerous. The basis for Roth's hypothesis is that anything short of total oxygen deprivation will result in death. Experimentation on human subjects is a staggering proposition; if the procedure does not perform up to the required standard, the result is almost certainly death. Belmont and Helsinki both deny healthy subjects participation in clinical trials, but how close to death would a patient need to be before he or she is eligible for this very clearly potentially lethal experimental treatment? This new technique stands at the cusp of revolutionizing medical practice, but it must clear significant hurdles before it does.

Relevant Sites:
"Scientists Hope Work With Poison Gas Can Be A Lifesaver" (CNN.com)

Tuesday, October 13, 2009

Simple Question... Male or Female?

Most people are born male or female. Chromosome 23 contains either an XX pair which is female or an XY pair which is male. Plain and simple, one box is checked on the birth certificate. This is not the case for 18-year-old Caster Semenya of South Africa though. She burst onto the track and field scene this summer at the World Championships in Berlin when she absolutely blew away the field in the women’s 800 meters. The whispering began as the qualifying rounds started, by fans, announcers, and other competitors themselves. The International Association of Athletics Federation noticed too and required Caster to undergo gender testing.

The “gender testing” was always described to outsiders very vaguely and indistinctly because the officials say the situation is very complicated. Does purely DNA determine an individual’s gender? What about sex organs or hormone levels? It most certainly is too, when an 18-year-old is put under international scrutiny for something she can’t control, it definitely requires a delicate handling of the state of affairs. My question is how far should this topic be taken? Fellow 800m finalist Elisa Piccione of Italy has been quoted as saying “These kinds of people should not run with us. For me, she’s not a woman. She’s a man.” Even the announcers during the World Championships commented that in the old days a gender test simply depended on the participant pulling down his or her pants. Now that Caster has been metaphorically thrown under the bus in the heat of the moment of competition, people have had a chance to look back a bit, and reflect on the situation.

In the span of five days, the 18-year-old Semenya underwent required gender, was humiliated by international competitors ho commented on her “maleness”, and was the leading story on headline around the world. In my opinion, this controversy has invaded hr privacy and challenged her dignity. She was born like this, and additional drug testing has not revealed any doping or illegal aids. The results that were leaked to the press indicate that she has both male and female sex organs, including internal testes and elevated levels of testosterone. This would explain why no one in her small rural town in South Africa would think she was a guy. Her external sex organs look female, however, her muscular physique, large hands and feet, deep voice, and facial hair reflect traditional male characteristics.

This is not exactly the same as someone who has specifically undergone a sex change, but it still merits attention. As new technology and procedures become available, where do we draw the line? Renee Richards, a tennis player in the 1970s, underwent a male to female sex operation and wanted to compete with the women. How do we justify this? Is this fair? How do we define which box to check, male or female? Is the gender assigned at birth the key, or in athletics is the exact physical make-up of the person more important? Also important in the Caster Semenya case beyond the gender issue, besides defining the line between male and female, how do we treat these people with dignity? This case highlights the fact that the determination of male and female is biologically concrete. How can privacy, dignity, and athletic fairness exist? Individuals with transgender or hermaphrodite characteristics have a social construction of their male or femaleness that goes beyond the appearance of sex organs or DNA. They can obviously be affected by what other individuals say, but many people seemed to forget that this summer when they saw a tomboy blow open the world championships this summer.

Sources Relevant to my post:
Dixon, Robyn. "Runner Caster Semenya has heard the gender comments all her life." Los Angeles Times. 21 Aug. 2009. Web. .
Malone, Andrew, Stewart Maclean, and Emily Miller. "'She wouldn't wear dresses and sounds like a man on the phone': Caster Semenya's father on his sex-riddle daughter." Mail Online. 22 Aug. 2009. Web. .
Marathon Mama. "Op Ed Wed.... Caster Semenya." Web log post. 5 Sept. 2009. Web. .
Yaniv, Oren. "Caster Semenya, forced to take gender test, is a woman ... and a man." New York Daily News. 10 Sept. 2009. Web. .

Monday, October 12, 2009

Growth Hormone: It It Crossing the Line?

Have you ever wondered what it would be like to be unusually short for your age?  What if you spent most of your life always being the smallest person in a group of friends?  Some people don’t just wonder about this but actually deal with it everyday.  A small percentage (2.3%) of children experience what is called Idiopathic Short Stature (ISS).  ISS means that a child is very far below the average height for most children of their age and sex.  These children are normal in every other way; they do not have any obvious mental or other physical problems.  My cousin had a similar experience.  He was well under the average height for his age so he started taking growth hormone at the age of four.  He continued taking growth hormone until he reached 18 years of age (the approximate age his growth plates might close).  Even after taking it, he is not a very tall person (≈5’ 6”), but the growth hormone did help boost his height so he would be closer to the average.

My cousin is not the only person who has taken growth hormone.  Many healthy individuals who are drastically under average height do.  Growth hormone is usually given for social or psychological reasons since it is difficult for children and especially adults to be so much shorter than the rest of their peers.  This is the big question: is it ethically correct to be giving growth hormone to children when it is not for a medical reason?  Is it really any different than getting cosmetic surgery, since that also makes a person feel better about themselves around their peers?  A half-inch in height will even cost between $18,000 and $36,000.  If some children are allowed to receive the hormone injections, then why couldn’t a parent use it to make their child taller to be better at basketball or volleyball?  I think that, regardless of its lack of medical reasoning, it should be allowed under certain circumstances.  I fully support its use for children who are far under the average height for their age and sex.  I don’t think it is appropriate or ethical to use it just for the benefit of gaining an advantage in a given activity.  Using the growth hormone to help children, like my cousin, attempt to reach a normal height is completely ethical and should be an accepted use.


Websites relevant to my post:

http://www.medicalnewstoday.com/articles/78129.php

http://www.hormone.org/Resources/Growth/upload/Idiopathic_Short_Stature_factsheet.pdf

A New Breed of Humans

As I began my search for possible blog post topics, I typed “bioethics” into the Google search bar. The first few sites that came up were ones that I had already visited for my last blog post or Wikipedia sites. I was about to type in a new search when something caught my eye in the corner of the screen. “Transhumanism,” it said, “the ethical use of technology to transcend limits of the human body.” Thinking it looked interesting, although not quite sure what I was going to find, I decided to see what humanityplus.org had to say.
When the page finally loaded, I was somewhat shocked by what I found. Besides the quote about using innovation to “radically benefit the human condition,” I found blogs on artificial intelligence and virtual realities, links to their projects on life extension and preparation for the future, and an advertisement for H+ Magazine with a caption that read “YOU are the doll—tweaking your neurons” next to a picture of a woman and some mannequins. After poking around a little more and finding phrases like “send us your thoughts, we aren’t getting any younger… yet”, I stumbled across the Transhumanist Declaration. The first line of it read “We envision the possibility of broadening human potential by overcoming aging, cognitive shortcomings, involuntary suffering, and our confinement to planet Earth.” This was shortly followed by their belief that our potential is still mostly undiscovered. But I began to wonder, once technology enters, is it really our potential that we are uncovering? When we are full of artificial enhancers, can we really say that it is the fulfillment of human potential that is making us live longer? As soon as we try to artificially and technologically enhance our natural state of being, we become something that is not quite human. Transhuman, I guess.
The website contains a diagram of the capabilities the “modes of being” accessible to first animals, then humans, then transhumanists, and finally the entire square, which is accessible to post-humans. These post humans are no longer constrained by death or the physical or mental limitations that we face today; transhumanists argue that if we could live for centuries, we could continue to mature and reach unheard of intelligence.
While this idea seems pretty amazing in theory, it feels like walking into a sci-fi movie—fun to watch, but I am definitely glad it isn’t real. In transhumanism, the Benjamin Buttons actually exist, humans live forever, and we are more like machines than animals. We do not need to live for centuries or have brains like computers. Although we are now more advanced than we once were, we still have physical and cognitive limitations that are only natural. Humans should remain humans, not evolve from transhumans to immortal, superhuman beings.

Website Relevant to my Post:
http://humanityplus.org/

Sunday, October 11, 2009

Colorblind No More

I was sitting in the nurse’s office, trying to figure out what the numbers were. Card after card of these random dots of color were put in front of me. Everyone else thought it was the easiest test they had ever taken, but I was lost. More than being lost, I was and still am colorblind. Yes, I see colors. One of the most common misunderstandings is that people with colorblindness see in black and white. But, that is not the case. I am able to see colors but have a hard time differentiating between them especially when they are put in the random jumble as they are at the doctor’s office.

Now, I have hope that one day I could be free of this colorblindness. Doctors at the University of Washington have enabled two colorblind monkeys to see red and green for the first time. After injecting the monkeys’ eyes with viruses carrying a gene which makes L-opsin, one of three proteins which are released when color-detecting cones are hit by different wavelengths of light, the monkeys were able to distinguish between red and green colors. Though it took the monkeys five months to stop banging randomly on the screen and instead distinguish between the colors, the results are incredibly promising. While this development is exciting it could even lead to curing blindness and other manipulations of the retina.

More than just being able to enhance the eye, this successful experiment demonstrates that gene therapy is ready to push itself to the forefront of the medical world. Though we must always be careful when balancing the risks and the rewards and also always keeping the patients’ best interest at heart, there is cause for hope with continued successes such as these with gene therapy.

Though I am not willing to go into a clinical trial at this moment for this treatment because I am not that adversely affected by being colorblind, it would be very interesting to see colors as everyone else does. Even with all of the problems gene therapy has had over the last few years with extremely unfortunate deaths, there does appear to be light at the end of the tunnel.




Website relevant to my post:
http://www.wired.com/wiredscience/2009/09/colortherapy/

The Age of Cosmetic Surgery

As our society attempts to speed toward perfection or what we consider as perfection, the debate over cosmetic surgery continues. The idea of becoming obsessed with removing all flaws was brought up in our very first class after reading Hawthorne’s “The Birthmark”. From nose jobs to tummy tucks, individuals attempt to grasp the unattainable and try to make ourselves the best we can be. Surgery was once reserved for life threatening situations. Now, these procedures can almost be considered routine. While I do believe that if a person desires cosmetic surgery, it is definitely considered ethical. I agree that cosmetic surgeons manipulate people and exploit people’s insecurities. However, American society should be given the real blame.

Our culture involves less appreciation of beauty and more criticizing of minor flaws. In our extremely superficial world, cosmetic surgery seems like a very easy way out of self-hatred or self-pity. In my research, I found that there is a rapid increase in the number of Asian Americans who go under the knife. From 2004 to 2005, Asian Americas had a 58 percent jump in the number of cosmetic surgeries (asiannation.org). All in all, nonwhites account for 20 percent of these surgeries, while only eight years ago the group was a mere 15 percent (asiannation.org). These statistics are shocking because they demonstrate how minorities are attempting to conform to the nation’s standards of beauty. America was once called a melting pot of cultures, and with these statistics I believe we lose that title. Cosmetic surgery is just a foreshadowing of the near future.

With the development of biotechnology, self-improvement will be taken to a new level. The continuing advancement of science is ethical when a great amount of caution is exercised. As humans, our nature is curiosity. Biotechnology could have beneficial consequences when is negative potential is fully recognized. Power over God is an extremely dangerous thing. Once the sides become a mucky gray, trouble begins. With the idea of cosmetic surgery and biotechnology, we must satisfy our burning questions but proceed wearily and never forget the superficiality of it all. If our society would grow to become less judgmental and more appreciative of our individual differences, the fear of biotechnology would be greatly lessened. Weakness can at times be a valuable thing. Our flaws shape our character just as much as our strengths do.

With special thanks to:

http://www.asian-nation.org/cosmetic-surgery.shtml

http://healthyskinglow.wordpress.com/2007/05/16/unethical-cosmetics-surgery-clinics-out-to-profit-off-of-peoples/

http://www.cosmeticplasticsurgerystatistics.com/statistics.html#2007-FACTS

Saturday, October 10, 2009

SHEMALE


I’m not sure if you are familiar with this term, but you definitely will after a visit to Thailand. Despite the huge ethical controversy it raises, the “shemale culture” is the cornerstone of Thailand’s tourist industry. Many tourists travel all the way from Europe only hoping to have a look at real shemale.
In Thailand, there is a whole system to produce shemales, who have full male bodies yet also female breasts. Shemales are from poor families that hope to make more money by turning their boys into shemale performers. There are special schools in Thailand that turn two-to three-year-old boys into shemales, and then train these shemales on their performing skills.

I’m appalled at the fact that such derogatory practice goes on without being banned from outside pressure. I’m also surprised by the fact that millions of tourists watch shemale performances and leave, getting entertained without a sense of guilty. Yes, the shemale industry is a commercial chain with managers leading their transsexual performers and putting on shows. However, thi s doesn’t justify people’s watching them for their own good feeling.
Almost all shemales lead a poignant life. Born as boys, they are raised as if they are girls. They are trained to dress, act, speak like girls. Meanwhile they take female hormone estrogen to stop the development of male genitalia and turn the metabolism towards the female side. After ten years, they look just like women with smaller muscle, thinner waist, larger breasts and extremely small genetalia. Because there are so many of them in Thailand, they are not discriminated in society, however, that doesn’t mean they are respected either. They just bear this “in-between” identity until they die in their forties or fifties, which is the life expectancy for shemales.
As the moral value of the whole world advances, one could only hope that the misconduct of turning boys into shemales can be banned.

Tuesday, October 6, 2009

Too Close to See Clearly

In 1965 David Reimer was born a boy. Eight months later during a botched circumcision his penis was burned off. Concerned about David’s psychological well being David’s parents went to Johns Hopkins Medical Center and consulted psychologist John Money. John Money, a bit of a maverick in his field, suggested that David undergo a sex change operation. Under his parents consent David was given strong estrogen doses, genitalia reassignment surgery, and raised as a female.
The more despicable aspects of the gender reassignment are prevalent in the details. Dr. Money’s main goal was not to help David but instead to prove his psychological hypothesis that gender roles and attributes result from nurture not nature. He thought that if David looked like a girl and was treated like a girl then he would become a perfectly normal girl. He did not inform David’s parents that he was treating David as an experiment. David had a twin brother to use as a control and he gained consent from the parents during a time of duress.
David discovered that he was born a male at age 14 and promptly decided to assume a male identity. Despite what Dr. Money’s published reports might say, the experiment failed miserably. David never felt like a female. His peers ostracized him along with experiencing suicidal depression. In 1997 he elected to reverse the treatment and married a woman.
In 1997 he also publicized the failures of the treatment with the help of sexologist Milton Diamond. Diamond published a book on David’s life with the intention of discouraging other family’s from using similar treatments on infants.
The general question of gender reassignment is a difficult topic to conquer in a blog post. However, I would like to focus on the circumstances under which these parents agreed to have gender reassignment surgery. Their son of eight months underwent a relatively common procedure (the means of circumcision were somewhat untested) that rarely had complications. My question is how did this unfortunate situation lead to a much more horrific one. Dr. Money obviously had a large role to play, but in this case the parents should have been able to protect their child. If gender reassignment surgery was a feasible solution for this case, then how is it that repairing the existing ‘equipment’ was not another solution? This would have been a much better solution to the problem that the parents should have seen, but they didn’t. Why not? The parents were not in a position to be making the decision for their child despite their legal prerogative. Sometimes parents can be too close to a situation to make an objective decision. Their views are distorted during times of particular duress as reported during this experiment. It’s a stick situation though. If an objective third party rules against the will of the parents, then who makes the final decision? I say that there are times in which a third party can make the final decision or, especially when time is not a factor, where decisions must be delayed for significant periods of time in order to give the family perspective on the situation lest they hastily make a rash decision.
The other important thing to note in this case is that it took over thirty years for this case to surface to the public. Why so long? I would say because the issue was particularly psychologically difficult. What does that mean? It dealt with sex and sexuality. Many advancements have been made in medicine, but an area that continues to lag behind are areas relating to sex and sexuality. There exists a social stigma in publicizing sexual matters. But should a social stigma prevent advancement? I do not think that anyone can force another person to publicize their private lives without their consent; however, there are few situations in the medical field in which sharing knowledge leads to bad consequences. Perhaps we should recognize and attempt to tackle some of the social issues stopping medical advancements. Tackling does not mean throwing aside, but it means that the issues must be met head-on instead of avoiding them.

Monday, October 5, 2009

Beauty Is Pain

Why do women go to extreme measures to look beautiful? Perhaps it’s to make them feel better about themselves, or to try and impress others. But are they actually making themselves feel better when they could potentially be hurting themselves in the long run? In an article written in the New York Times last week, the author discussed that women wore shoes that could cause harm over shoes that helped prevent damage. 60 percent of the 3,378 surveyed said that they chose to wear a less supportive shoe, such as a high heel or a sandal, over a sneaker. What might be the reasoning behind that finding?

I know that most women love to shop, and many have a weak spot for shoes. There is just something about a beautiful pair of five inch, pink jewel covered stilettos that make it hard to resist. The pain you may endure from wearing a shoe such as this seems well worth it when making the purchase, but potentially regrettable two hours into the cocktail party. Certainly everyone may be complimenting the shoes, but clearly they don’t experience the pain; moreover, they won’t be suffering the consequences.

When people seek out medical evaluation of injury, the doctor usually gives a diagnosis and a cure. If one has a broken arm, it goes in a cast. Should the problem be a swimmers ear, the pool becomes off limits. Foot and ankle pain? Supportive shoes are the answer. Why do most people continue to knowingly wear shoes that can cause potential injury? Perhaps the desire to pursue fashion overrides the pursuit of health. Certainly the time honored tradition of pursuing fashion over health has been with our culture for generations and is expected to maintain its position of importance for generations to come.

http://www.nytimes.com/2009/10/06/health/research/06patt.html?ref=research

Off-Label Drug Use?

In last Wednesday’s issue of the New York Times, an article titled “Botox Maker’s Suit Cites Free Speech” reported about a controversy that has arisen regarding drug marketing regulations. According to current Food and Drug Administration (FDA) regulations, drugs may only be marketed for the specific uses that the FDA has approved them for. However, while they cannot be marketed for other uses, doctors are allowed to use their “medical judgment” to prescribe drugs for other uses that have not been officially approved.

Botox makers would like to be able to market their product for uses other than treatment of crosses eyes, eye spasms, severe neck contortions and wrinkles, the only FDA approved uses. Currently, Botox is often prescribed by doctors for use in treating facial spasms, vocal cord problems, and migraines, but these are not FDA approved and thus cannot be used in marketing. Allergan, the Botox company that is suing the FDA for infringement of its freedom of speech, would like to be able to market Botox for these as yet not approved uses as well.

Two pieces of information brought up in this article disturbed me. First, I was not aware that doctors were allowed to prescribe drugs for uses that are not FDA approved (or approved by any official body at all). Although doctors do usually act under the Hippocratic Oath, and thus are unlikely to prescribe a treatment that will undoubtedly do the patient harm, the fact that doctors have this much flexibility does seem to open the door wide for unregulated and potentially risky experimentation. In addition, because drug companies cannot market off-label uses of drugs that doctors may prescribe to patients, doctors may not always have all of the relevant information that the drug companies have regarding the risks of the use of drugs for different purposes. In short, drug companies are banned from providing information regarding techniques (including correct doses) and risks in the use of the drugs for off-label treatments leading to a system of guess-and-check by medical professionals.

There are two methods by which this second issue of lack of information to doctors could be solved. First, drug companies could be allowed to market their drugs for off-label, non-FDA approved uses. This does not seem to be the best option as it could potentially lead to hazardous experimentation in the medical field. The second option would be to only allow doctors to prescribe drugs for FDA approved uses. This seems ideal. However, the FDA would have to work overtime to research the risks and benefits of each drug for each type of treatment that is proposed so as to not inhibit medical advancement by being slow to improve beneficial treatments.

Related links:

http://www.nytimes.com/2009/10/03/business/media/03drug.html?scp=2&sq=botox&st=cse

Poppin' Pills

It would be absurd for a major pharmaceutical company to make, package, and sell bottles of sugar pills as prescriptions for Parkinson's, schizophrenia, or depression. Absurd, possibly, until you consider that placebos have almost doubled in statistical significance in double blind tests of new drugs conducted by pharmaceutical companies since 1980. Even less absurd when you consider that long-standing and well-established drugs like Prozac are now coming up short when put to the test against a placebo. Somehow, the placebo effect is becoming stronger.

What is especially interesting about this is what the team of researcher William Potter and technician David DeBrota uncovered when they took a comprehensive look at the test records of Eli Lilly, a major pharmaceutical firm. They found that observers in lab tests had different ideas of success or improvement in their clinical results labsite to labsite. They found that the placebo effect could be huge even in trials that were tightly controlled. Perhaps most interestingly, he found that different drugs were found to be more or less effective as compared to a placebo based on geographic location. A certain drug tested in the United States may fail in double blind trials while it succeeds in France and Germany.

Is this really so surprising, though? In a culture where poor grades or hyperactivity are grounds for prescribing amphetamines to a ten year old, where feeling scared, lonely, or unhappy is a condition treated through medication, where pills are almost as ubiquitous in the average handbag as loose change, why wouldn't we put our trust in anything we're told to take? As we've come to rely more heavily on pills and pharmaceuticals for whatever ails us, we could be conditioning ourselves to respond more to the mere presence of the pill than to the pill itself. Something has to give: either drug companies need to begin pioneering new ways to test their products, or research has to be put into utilizing the body's natural propensity for self-healing as an alternative to pharmacological methods.


Relevant Sites:
"Placebos Are Getting More Effective. Drugmakers Are Desperate to Know Why." from Wired.com

Sunday, October 4, 2009

Monsters Used to Test Children

Human experimentation studies an array of human responses to experimental stimuli—the psychological effects of experimental situations, the physical effects of new medications or therapies, etc. Such experimentation often aims to study unprecedented procedures and therefore often requires risk. However, risky experimentation quickly becomes unethical when it subjects unwitting participants to harm, especially when such harm has lasting effects. This sort of experimentation is exemplified in the “Monster Study.”

In 1939, a pathologist named Dr. Wendell Johnson posed a hypothesis stating that stuttering is an acquired trait that people can generate in children. In order to test this hypothesis, Wendell went to Iowa Soldiers’ Orphans’ Home and used twenty-two of the orphans in his research. Without their knowledge of the study, Wendell and his fellow researchers set eleven of the students aside as a control group and treated them with common respect. With the other eleven, the adults would be quick to criticize the children and were intentionally belittling and unkind to them. In doing so, they were testing to see if the children would begin to stutter. The researchers' actions likely seemed petrifying the children, which is why the experiment became known as the "Monster Study."

None of the terrorized orphans developed stuttering problems, but they were left with many lasting psychological problems, problems so trying that in their older age they sued the university at which Johnson had been experimenting. Johnson tested these young children without their understanding or consent, but even if they had known about the experiment, it would not have protected their sensitive emotions and malleable minds. Children’s minds are still forming, so constant bitter and belittling remarks can leave scars on their impressionable minds. Considering all this, one can conclude that it was extremely unethical for Johnson and his fellow researchers to subject these vulnerable children to psychologically detrimental treatment due to the lasting psychological harm on the children that was wittingly induced.

The procedure was indeed mentally harmful for the children, so why would Johnson and his fellow researchers find it necessary to perform such a procedure? What gain would anyone have from knowing that, yes, terrorizing children does in fact make them stutter? Perhaps one could claim that by investigating the cause of stuttering, stuttering can be prevented. In response to such a claim, I would say that it is acceptable to try to discover the cause of stuttering, but it is never acceptable to subject anyone to any form of harm, whether it be physical harm or mental. Perhaps if an adult knowledgably consented to be subjected to such stress, such treatment could possibly be considered acceptable, but children, who make up a vulnerable and impressionable population, should never be exposed to such consistent belittlement. In an experiment, when someone is subjected to any form of harm, and if they are exposed to such treatment by force or without enough knowledge, as these orphans in the “Monster Study” were, the experimental procedures should be deemed unethical.


Sites used:

http://www.cbsnews.com/stories/2003/08/06/health/main566882.shtml

http://www.msnbc.msn.com/id/20327467/

http://listverse.com/2008/03/14/top-10-evil-human-experiments/

Sorry, But You Can’t Live Because You Have Down Syndrome.

Technology has made it possible for pregnant women 35 and older to know beforehand if their fetuses possess the extra chromosome that causes Down syndrome. Recently, this screening procedure has been made available to all pregnant women. According to an article in The New York Times, a shockingly high percentage of women—a mind-blowing 90 percent—who receive a Down syndrome diagnosis opt for an abortion.

But who are we to judge who has the right to live? With Down syndrome comes mental retardation, dependence on others, and shorter life expectancies, but these handicaps and disadvantages do not necessarily outweigh the benefits of life itself. People with Down syndrome are human beings too; they are perfectly capable of possessing emotions, partaking in everyday activities, and expressing their individual personalities.

However, at the mention of the genetic condition, potential parents of a fetus with Down syndrome often shy away from the thought of raising a disabled child. I would be lying if I said that children with Down syndrome do not bring extra burdens and responsibilities, but in reality, since when has it ever been easy to raise a child? Children everywhere, with or without disabilities, require unconditional love as well as endless attention, devotion, and care. Children with Down syndrome are no different.

Relevant site: http://www.nytimes.com/2007/05/09/us/09down.html