Lorenzo's Oil

Research - ALHE 5500
Lorenzo's Oil Quiz
1. What was the primary disease in this movie and whom did it affect?

The primary disease was Adrenoleukodystrophy or ADL. This is a fatal progressive disease that causes severe deterioration of the myelin sheaths that coat and protect the axons on nerve cells. This disease is passed from mother to son and onset occurs between the ages of five and ten years of age. ADL, if untreated, is usually fatal within two years of diagnosis. The focus of this movie was Lorenzo Adone who was diagnosed at the age of five.

2. How would you classify the disease' impact on the patients functional status..mild, moderate or severe, and why?

The functional impact of this disease is horrifically severe. Early onset is mild. As the disease progresses and the brain begins to deteriorate all bodily functions begin to shut down. Patients become mute, blind, non ambulatory and can no longer swallow. Over time all motor functions are lost.

3. In your opinion, how did the research doctors regard Lorenzo's parents?

Initially they felt the Adones should simply live with the disease. Since no treatment was available researchers told them all they could do was keep Lorenzo as comfortable as possible until his death. Dr. Nickolais appeared to care for their position but did not believe that there would ever be a cure. Certainly not in time to save the life of their son.

4. "The roles of the researchers were juxtaposed or changed in this movie." Explain why this is true.

In the beginning the researches were arrogant and wanted the Adones to stay out of their field of expertise. As the Adones began to research this on their own and presented relevant information, the researchers became more interested in the new findings and ideas causing many to look the cause and affects of this illness in a different manner.

5. Dad had a breakthrough at the library - explain the paperclip analogy/model.

In order to put a picture in his mind Augusto Adone began linking chains of paper clips with different shapes to try and find a relationship between the competing fats. He realized that something had to replace the oleic acid to stop the saturated fats. From this point he began researching monounsaturated fats to determine if they were a missing link In the chain.

6. Dad was concerned when Lorenzo's friend came from Africa to live with the Adone's and care for Lorenzo. What was Dad's primary concern?

Augusto was concerned that he would not be prepared to see Lorenzo in such a weakened and sad state. He was also concerned about any prejudice that he might face as an African Muslim.

7. Who was the first human subject to consume the oil and how was it dosed and administered through what portal (ingested, injected, absorbed, inhaled, or other)?

Before experimenting with Lorenzo's Oil the parents administered olive oil to Lorenzo. First in foods, then through his feeding tube. Once they had the oil combination (grape seed and olive oil) known as Lorenzo's Oil the first person to use it was Lorenzo's aunt. Her first administration was as a dressing over green leafy vegetables. When her levels began to drop then the parents administered to oil to Lorenzo through his feeding tube.

8. What is the role of money in this research product? Who paid for most of the early groundbreaking research?

Money plays a role in all research projects. In this one in particular no one was willing to put money into the hypothesis the Adones had presented. As their personal research continued they took out a second mortgage on their home to pay for the expenses in the development of Lorenzo's Oil including setting up a symposium of scientists to discuss their findings.

9. The critical mass theory suggests that multiple researchers conclusively find (or frequently stumble upon) an answer to a scientific inquiry. Were the researchers on a single path to finding a cure for this disease?

I do feel the researchers were on any particular to a cure. Many seemed to have decided all the research that could be done, had been done. After the Adones were able to show miraculous results in Lorenzo's readings the researchers became interested and even excited about continuing on with the research the Adones began.

10. Consider ethics for a moment. Does this movie represent a appropriate ethical model for research. Defend your answer.

This movie showed two avenues of research and ethics. Dr. Nickolais was correct when he told the Adones that you could not simply start testing an unproven treatment on humans without the research to back up the efficacy and safety of the treatment. On the other hand, the Adones were not putting Lorenzo's life in any more danger than it was already in. Knowing the circumstances, as a parent I would have done the same thing. As a scientist, I would have no other choice but work within the confines of the scientific community until the hypothesis could be tested further.