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

"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.

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.

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