What if, completely hypothetically speaking, participation in clinical trials was required of all terminally ill patients? Of course there are numerous flaws in this proposition, but imagine for a moment that this was law. Would the benefit for society outweigh the burdens to the patients? The article Dying Children and Medical Research: Access to Clinical Trials as Benefit and Burden notes that in the 1960s there were very few, if any, effective treatments for children with cancer. Because of the large number of children enrolled in medical studies – the majority of children with cancer now take part in clinical trials – tremendous progress has been made in pediatric oncology. Leukemia, almost always fatal half a decade ago, now boasts a seventy-five percent survival rate. Without the testing of children, such success would never have been a reality. Though the children enrolled in each study may not have personally benefited from the procedures, the testing has clearly proved beneficial to future generations.
If terminally ill patients are going to die, would it not be worth it to have them take part in a study to benefit others in the future with their same disease? Perhaps the risks for a Phase I trial may be too great, but what about a Phase II or Phase III trial? The knowledge attained by testing a patient who will die anyway would provide insight into therapies which would benefit patients with the same disease in the future. The benefit to society would outweigh the burden to a terminally ill patient.
There are clear arguments against this proposition, namely, the autonomy of a patient and their right to consent to clinical trials; however, as shown by the drastic increase in survival rates for pediatric cancer, the benefits for future generation are great.
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3 comments:
The idea of required testing for terminally ill patients is one I disagree with for the reason listed in the last paragraph, but also for one which was not included. Obviously, the idea of forcing an autonomous individual to do something is one naturally repulsive to others who understand what it means to be free, but what is missing in the argument is the implication drawn by such an argument as the first sentence in the second paragraph.
Justifying the use of terminally ill patients due to the fact that they are going to die anyway is a flawed reason, for that is a fact of life shared by all humans in whatever stage of life they are in. It then would not matter whether they are terminally ill or not. Is it then justified by the fact that their time left on this earth is negligible? This would give way to two more questions: Where is the line drawn in terms of time for the approval to override autonomy? And why is time being used as a reason in the first place?
When making decisions like these, one must consider inherent value. The reason why autonomy makes a strong argument against the idea of required testing is because we believe that all humans have the inherent right to autonomy. And since the length of lifespan does not constitute an inherent value of human beings, it cannot be used as an argument on the basis of rationality, despite what benefits may be derived from it.
I completely understand your arguments against my post. What I wrote was completely hypothetical and a far-out there idea which I hoped would start an interesting discussion (and it did!). I do believe that the life of a patient has inherent value, and the patient has a right to determine what happens to him or her; however, as outrageous as my claim was, there are real life situations dealing with issues similar to this. On the Women’s Bioethics Blog I found a post about research happening in the UK where scientists are cloning cells from human tissue that had been donated for research. Although that may seem reasonable, the scientists are doing all this without the donors’ consent. The advantages for such research are great: through cloning the tissue cells, especially the cells of diseased tissue, scientists can make tremendous gains in their knowledge of diseases and treatments. The freedom to be able to use any donated tissue for research is incredible.
The arguments against this research are similar to the arguments you brought up against mandatory enrollment in clinical studies for terminally ill patients; namely, the lack of consent and the removal of autonomy. The patients who donated their tissue did not consent to the cloning of their cells, and no effort was made to receive their consent. Scientists are reproducing their cells without their permission which obviously goes against any guideline about informed consent and autonomy.
But, as with the situation with the terminally ill patients, and as the blogger on the Women’s Bioethics Blog states, what if the benefits of the research for future generations outweigh the preference of the patient and the harm to the patient? Is it ever alright to override a patient’s decision for the benefit of the common good? What if, through the cloning of these human tissues, cures to currently incurable diseases are found? What if tissue donated without consent to do this research cures cancer or AIDS and the course of the future? Would we even think twice about consent at that point?
Topic found at: http://womensbioethics.blogspot.com/2008/02/sues-post-for-wednesday-im-on-vacation.html
I believe that both of you raise very interesting points relating to the issue of informed consent versus the benefits to society. In reality, I think that both views are justifiable and that differences arise from personal beliefs. In this context, I believe that emphasizing the importance of informed consent stresses human individuality whereas emphasizing the benefits to society stresses the issue of social obligation and the common good. In a way, this situation parallels the battle between capitalism and communism. And because we all know that capitalism is better than communism, informed consent trumps the common good. Quod erat demonstrandum. (Just kidding.)
I believe that this issue has a lot of tangles that we have not even scratched the surface of. For example, does an individual have a responsibility to care for the common good? From a western perspective, we greatly emphasis individuality and independence and would thus be more inclined to view the individual as being more justified to act selfishly rather than for the common good. In most cases, however, does the individual not owe his life to the feats of others? Do we not owe the discovery of the smallpox vaccine to our predecessors? If man were to act completely independently and disregard the wellbeing of all others, what would happen to the society? Initial impressions would seem to indicate that the society would fail if everyone was selfishly motivated as no one would want to help each other and everyone would die alone. Such a position, however, fails to realize that being selfishly motivated can still benefit society. An entrepreneur, for example, may only care about making profits and not care about his employees or customers. Nonetheless, he depends on his employees to make the products and pays them accordingly, and he depends on the customers to buy the products to yield revenue. In this case, the employees benefit from the entrepreneurs selfish drive as they now have an income, and the consumers benefit by having useful products. This situation raises the issue of whether selfish motivation can actually benefit the society.
This concept of individualism, however, is a very western concept and is more elusive in eastern cultures. Eastern cultures believe in collectivism and have a greater emphasis on social responsibility, social obligation, and interdependence. Would eastern cultures be more likely to ignore the importance of informed consent if experimentation promoted better welfare?
Mary raises the issue about whether researchers can use donations for their own devices without the donor’s informed consent. I feel that once a person donates something (blood, tissue, organs) the institution now owns the contribution and no longer needs to consult the donor. (This belief may partially stem from my ignorance of the topic at hand; I tried to access the article that relates but the article could not be found.) A crude analogy to this topic would be the transference in ownership of a car. When person A gives the car to person B, regardless of whether he is buying it, is giving it as a gift, etc, person A implicitly states that he allows person B to do whatever he desires with the car. Once the transaction is completed, person B has no obligation to seek person A’s permission on how to treat the car. If person B wanted, he could drive the car off a cliff and person A would have no right to argue; the car no longer belongs to him. Obviously, the issue of human cells is a more touchy subject matter, but stripped to its simplest form, a donation is a transference in ownership.
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