1. Be sure to identify the different individuals and the groups or institutions represented and their respective interests. What values does each group espouse?
Several groups can be observed in this particular film. The first community is represented by those working in the medical arena. The other group stands for pharmaceutical companies, which, under this context, can be categorized as business-related establishments. The presence of support groups is also felt in the movie such as the ALD foundation. Lastly, the individuals afflicted with ALD and their respective families comprise the fourth community. This is also the group in which the Odones belong.
Those who are in the medical field stress the importance of observing protocols before providing the actual medication. As men and women of science who went through formal education and therefore considered as experts in the field, the validity of their recommendations can be only affirmed or debunked once experiments and trials are conducted. This group cannot afford to simply rely on their emotions to provide conclusions. Factual evidence is highly important to these individuals.
However, the sentiments of medical professionals are in stark contrast to the values expressed by the patient and his or her family. As shown in the film, Lorenzo’s parents prefer to take risks rather than merely rely on the doctors. They are willing top grab every opportunity that can possibly help them prolong the life of their child. Accepting the bitter reality that ALD has no cure is pretty difficult not only for the patient, but also to the people that surround him or her. Therefore, these individuals would definitely rally for faster results rather than wait and depend on required time frames and protocols.
In the meantime, the ALD foundation is primarily focused on addressing the emotional needs of the patient’s family. The foundation is concentrated on forming a community wherein there is a commonality of experience that can help them connect and understand the struggles of each other. This group is specifically interested in providing a sense of belongingness among families struck by ALD—something that other people or even the closest relative cannot possibly give due to the lack of deeper understanding of the situation.
Lastly, the values shown by pharmaceutical companies mirror their business-oriented agenda. Somehow, there is willingness to help. But then again, as manifested in the film, this group would still prioritize the image and reputation of the business establishments that they represent. These organizations are willing to provide assistance but they do not want to take full responsibility for the consequences or outcomes of their actions. If these companies would help the Odones, this means that they have to utilize a considerable amount of time that could be otherwise used for more profitable activities, not to mention the fact that they face the possibility of facing legal problems in the long run.
2. Explain how the interests and values collide
Although the Odones proved the merit of their contentions and arguments, it is pretty unfair for the doctors’ part to be labeled as inconsiderate individuals. The protocols that they follow are mandatory in scientific research. They are trained to strictly follow each step and rigidly record any change or development. This will see to it that possible complications could be avoided. This will also ensure that clinical trials would not add further damage to the participants, much more to create false hopes. Unfortunately, the Odones find it pretty difficult to openly accept such kind of set-up. This is expected. The doctors are the only hope that ALD-stricken families see. But the recognized experts cannot seem to find an answer, thus, the processes that these experts follow cannot be easily accepted. It can be argued that the reactions of hopeless families all boil down to the heavy emotions that they feel about the matter.
The ALD foundation shares the same sentiments with the Odones but it is torn between the families of ALD patients and ALD experts. The foundation tries to function as a support group that truly understands the emotional and moral needs of its members. Likewise, they are also giving full attention to the doctors’ recommendations. In effect, the foundation serves as a mediator. It is expected to articulate the demands of affected parties to authorities in order for direct action to take place. Similarly, it is also in-charge to report the doctors’ scientific developments regarding this matter. Therefore, balancing interests is never an easy job for the foundation. The organization feels the pain and suffering of ALD patients, however, they cannot simply ignore science’s underlying mechanisms and principles.
Conflicting interests are also manifested as for the case of the Odones and drug companies. The difficulty in extracting the necessary oil is the primary reason behind the unwillingness of these organizations to cooperate with the family. However, it is not just the difficulty per se that prevents these establishments. It is more of the underlying costs that are embedded in the process that do not guarantee a possible return of investments. In addition to that, these companies also have to consider other matters such as its legal implications, and all the hassles that they have to go through in obtaining government approvals and recommendations.
3. How does a sense of time differ for the different groups?
Time plays an important role in the film. For those whose lives are affected by ALD, long intervals can eventually lead to death. In here, it can be argued that the idea of being patient does not readily apply. Waiting is perceived as something that is synonymous to doing nothing. In desperate cases wherein solutions become too impossible, time becomes a merciless opponent. Augusto Odone can no longer wait. He spent long hours in the library trying to comprehend ALD’s mystery. To a certain extent, this can be described as a proactive move.
The sentiments of the Odones are also felt by the people behind the ALD foundation. However, this group is highly dependent on the doctors’ decision. In as much as other members would want to see their children get better on a faster pace, they are not discounting the fact that they lack expertise on this matter. Given such situation at hand, the foundation cannot be as proactive as the Odones. Foundation members are also in dire need of an immediate cure. However, they have to follow the timelines provided by the doctors. Exerting actions that are way beyond science’s prerogatives posit a higher risk than simply waiting.
In the meantime, it is pretty obvious that doctors are in favor of long intervals. This is something that cannot be overtly dismissed as a sign of neglect. First of all, ALD is a rare disease. Studies conducted about it are very limited. Therefore, gathering evidences and other resources cannot be done overnight. In addition to that, the technological gadgets and equipment that were used before were not as sophisticated as the materials utilized today. Data gathering and protocols are necessary to ensure that accurate answers can be derived. Accuracy is the ultimate principle that guides the medical arena. Therefore, in order to achieve accuracy, overlapping factors and variables are taken into full consideration. Time in here is seen as an ally rather than an enemy, which could aid doctors in effective answers.
On the other hand, the concept of time in drug companies is evaluated via the corresponding costs attributed to it. As previously mentioned, as business organizations utilize their time for certain tasks or projects, its importance is measured through the possible profit that the endeavor can deliver. Although not directly stated, still, the slight hint of apprehension shown by the drug company which aided the Odone, was somehow affected by its business orientation wherein time, return of investments and profit share a special relationship.
4. How did the researchers abide by or deviate from the standard of ethical conduct in research that you have read?
Weisberg, Krosnick and Bowen (1996) explained that research ethics is particularly concerned on preventing data abuse and misuse. In as far as Lorenzo’s Oil is concerned, there are scenes that exemplify how researchers observe ethical conducts. This is most especially true as for the case of Dr. Nikolais. At a glance, Dr. Nikolais’ protocols seemed harsh and cruel. However, from a critical perspective, Dr. Nikolais has been efficient in practicing objectivity. At the end part of the film in which Nikolais was invited to become a speaker for the ALD foundation, he was not swayed by his emotions when Wendy divulged that her son showed some improvements upon taking Lorenzo’s oil. This kind of revelation spells triumph and success. Jubilation is expected since a preliminary cure is now available. However, Dr. Nikolais remained detached and insisted that trials should be conducted first before giving recommendations. Dr. Nikolais knew that in order to be objective and accurate, his emotions should not take over.
Honesty, which is an important ethical element in research, is also manifested in the film. When Lorenzo was put into immunosuppression , the doctor concerned disclosed the implications of such treatment. Instead of resorting to sugar-coated promises, the doctor gave the Odone couple a full picture of the things that could happen to Lorenzo.
5. What are the implications for research on or with vulnerable populations?
On a closer examination of the matter, Lorenzo’s Oil has successfully shown the struggles of families afflicted with rare diseases, not just ALD. It has shown the other side of the story, which is commonly taken for granted in real-life scenario. The film has also managed to show how scientific experts deal with this matter at hand. In as far as vulnerable populations are concerned, it should be stressed that the needs of these groups are highly different from other individuals. Sensitivity should be thoroughly observed and practiced. Vulnerable populations need special attention and care and should not be looked upon as yet another ordinary case. The protocols applied to ordinary cases may not be beneficial to vulnerable populations Researchers should double their efforts in addressing the concerns of these communities. However, the role of research in this case is not limited to identifying solutions alone. Based from the information that they have gathered, the results of their studies should also help vulnerable populations acquire full support from the government.
6. What other reflections or comments applicable to research with human subjects does this movie evoke?
Aside from the fact that research concerning human should try to minimize or lessen the potential damages that it can cause, it is important to note that human beings are highly capable of expressing their feelings and emotions. Compared to lower forms of animals, human beings can be pretty reactive when it comes to the treatment that they receive. Under these circumstances, patience and understanding are two important factors that must be practiced and emphasized. In as much as researchers must maintain objectivity, this does not necessarily translate to becoming numb. Studies and experiments wherein human beings become the subject should also try to address the emotional concerns of the participants. Human beings and even lower forms of animals should be treated with utmost respect and dignity.
References
Weisberg, H; Krosnick, J and Bowen, B. (1996). An Introduction to Survey Research, Polling and Data Analysis. California: Sage Publications Inc.
