Lorenzo is a bright and vibrant young boy living in the Comoro Islands, as his father works for the World Bank and is stationed there. However, when his parents relocate to the United States, he begins to show neurological problems, such as loss of hearing, tantrums, etc. The boy is diagnosed as having adrenoleukodystrophy (ALD), which is fatal within two years. Failing to find a doctor capable of treating their son’s rare disease, Augusto and his wife set out on a mission to find a treatment to save their child. In their quest, the Odones clash with doctors, scientists, and support groups,who are sceptical that anything could be done about ALD, much less by laypeople. But they persist, setting up camp in medical libraries, reviewing animal experiments, enlisting the aid of Professor Gus Nikolais (Peter Ustinov), badgering researchers, questioning top doctors all over the world, and even organizing an international symposium about the disease.
The research integrity topic this movie discusses are among others: the difficulties in finding financial support for a medical research, getting the recognition by the scientific community and authorities that is needed before one can start a research, the restricting characteristic of a research protocol, the dilemma of a researcher of wanting to improving healthcare but also having to comply with set ethics research guidelines. Furthermore, the movie shows how a boy turns into an object in an experimental research and the rise of tension because of the differences in expectation and research goals between the parents and the scientist.
This movie is included in the Fiction movies for RCR education.
Key words: Ethics / Experimenter bias
Medium: This film is available on DVD
Internet Movie Database (IMDb) about this movie: IMDb
Drama / playing time: 129 min.
Lorenzo (Zack O’Malley Greenburg) is a bright and vibrant young boy living in the Comoro Islands. His father, Augusto (Nick Nolte) works for the World Bank and is stationed there. When his parents move to the United States, he begins to show neurological problems. Lorenzo is diagnosed with adrenoleukodystrophy (ALD), A disease that can be fatal within two years. Failing to find a doctor capable of treating their son’s rare disease, Augusto and his wife Michaela (Susan Sarandon) set out on a mission to find a treatment to save their child. In this mission, they clash with doctors, scientists, and support groups who are sceptical that anything could be done about ALD. But they persist; they set up camp in medical libraries, review animal experiments, enlist the aid of Professor Gus Nikolais, question top doctors all over the world, and even organize an international symposium about the disease. Although sceptics surround them they persist until they finally find a therapy involving the addition a certain kind of oil to Lorenzo’s diet. They try to contact firms from all around the world until they find a chemist who is willing to take on the challenge of distilling the proper formula. The oil proves successful and calls a halt to their son’s steady decline (halting the progression of the disease).
There is a total of 7 fragments that are selected from this film for educational purposes. Some have their own ethics section, whereas others share this section.
This fragment provides us with an explanation of the neuron-degenerative disease ALD. Long fatty chains in Lorenzo’s bloodstream have a destructive effect on Lorenzo’s brain cells. The fragment shows the moral dilemma of a scientist who has to tell the unpleasant and confronting truth; there is nothing that can be done to improve Lorenzo’s situation.
Ethics of fragment 1
What is the best way for a scientist to explain to the relatives what the situation is without having to leave out certain information and prevent an emotional confrontation that may lead to the loss of their trust and support? Also, it can be seen as a moral obligation of a doctor to offer hope for his patients, but in what cases does a doctor have to refrain from this to prevent giving a patient false hope.
A colleague scientist informs Lorenzo’s doctor that there is an experimental treatment that is based on a certain healthy diet. Although the pros and cons of the experiment are not known at that point, the treatment might be a way to treat Lorenzo. Because the parents are desperately looking for a way to cure Lorenzo they give their approval to enrol Lorenzo in the research trails without really knowing what the research actually entails and what the dangers and health risks are.
Ethics of fragment 2
One could ask whether the scientist provides enough information for the parents to be fully informed to make a well-informed choice? A subsequent question is: what information is crucial to make be properly informed? Also, one could ask if a person is ever able to make a good choice in the situation the parents are in? They are clearly desperate and probably would seize every opportunity. Maybe in such cases a doctor should take more responsibility for he might be more able to make an objective and well-informed decision.
Fragment 3 shows the research stage in which the drug dose is being determined amongst other parameters. During this stage of an experiment nothing can be said about the possible negative or positive effects of the treatment. This can be very frustrating for the relatives of the patient, for medical research is conducted for public health in general, and not a specific patient. Also, it shows the situation in which the parents are asked for assent time after time, becoming more and more suspicious about the outcome of the experiment.
Fragment 4 illustrates how a certain experimental treatment, is declared as the ideal treatment. Also, people are encouraged to keep participating in the experiment during a gathering of people that are in the same position. The researchers make it seem as if everyone benefits from the treatment but clearly this is not the case.
Ethics of fragment 3 and 4
What are the scientist doing wrong? Should they be completely open about the nature of the experiment and risk a lot of experimental drops out? The latter would create a situation in which no one is helped, for research can only be conducted out? enough research subjects. It is a moral dilemma inseparable of the early stages of research. On could say that the scientists should leave be more room for discussion. On the other hand, a discussion might not lead to a usable solution, for the “shortcoming” of research is that it has to be conducted in accordance with a strict protocol, with certain duration of trails, and this is not easily comprehendible for the outsider/parent.
In fragment 5, the parents decide to take “control” in own hands and start looking for a solution. They reinterpret the results of the experiment. This research leads to a possible solution, but because the idea is not well substantiated they cannot find a fund that is willing to help them. Even though they are probably right, because of all sorts of interests and obligations this research cannot be conducted.
In fragment 6, Lorenzo’s parents come up with their own research protocol, without any researcher involved. The film pictures it as an act of heroism, but one can put some question marks here. Clearly this is not an ideal situation, Lorenzo’s parents are desperate in need for help to cure their child, and lose sight on any moral boundary for the cause of Lorenzo’s health. Also, the fragment shows a by the parents initiated symposium and how they raise funds for their research. Furthermore, it gives insight in the reason for denial or approval of certain protocol. Although this is not any day-to-day academic situation, the fragment gives clear insight in how a symposium for a certain disease is organised and is conducted.
When the research of Lorenzo’s parents is not supported by the academic world they decide to use their son as subject for research. Although this is morally objectionable, the parents say that it is their own son, and that they can determine what he eats and doesn’t eat.
Ethics of fragments 5 and 6
Is it permissible for parents to take the fate of their child in their own hands; is it morally a right thing to do? Is this the right way for a scientist to react to certain developments in a research? Should he maybe take responsibility and warn the parent about the risks and dangerous?
This fragments shows a stereotype of the scientist. Also, it is about the lack of power of parents, and the emotions that this impotence provokes.
Ethics of fragment 7
The scientist has, apart from the health of the child, public health in general as their main concern. This creates an area of moral tension between people with different expectations.
This movie is based on a true story. For this reason, one could say that it is a very realistic movie. Although this is the case, the situation pictured in this movie is not any day-to-day situation one could expect as a scientist. Moral guidelines nowadays are stricter and better formulated, for this reason the Lorenzo case would most probably not occur today. Still the movie gives a very realistic and informative insight into the academic practices on the development of a cure, the essential experiments and the interests that play a role.
This film provides inside in what goes on in the minds of the relatives of a patient/research subject. The main Research Integrity topic that are discussed in this movie: do parents have the right to decide about the life of their child, is it de scientist/doctors’ duty to withhold parents from certain desperate actions, and if the latter is the case, what is the best way to do so. Furthermore, the importance of informed consent and also the value of life of a research subject are discussed. The latter mentioned topics can on the basis of the fragments be discussed in class. A possible application could be to individually letting students analyse the submitted materials and letting them philosophize about what exactly is not going well in the doctor/scientist – patient approach, and also how to would like to see this differently. Also, a good question one could ask is where the responsibility of a parent ends when it comes to the life of their child, and where the moral responsibility of a scientist/research begins. Related to research integrity one could deliberate on the importance of research protocols, what are the downsides (researcher has to act in strict accordance with a protocol & phase-1), and what are the strengths (research guidelines create a “save” research structure?)
There is still a great deal of neurological damage remaining, which could not be reversed unless new treatments could be found to regenerate the myelin sheath (a lipid insulator) around the nerves. The father is seen taking on the new challenge of organizing biomedical efforts to heal myelin damage in patients. At the end of the movie we see Lorenzo (now at the age of 14) shows definite improvement, answering ‘yes’ or ‘no’ questions by blinking, but more medical research is still needed.
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