Mary Donohue – Spring 2007

Research - ALHE 5500
Lorenzo's Oil Quiz - 10 points

1. What was the primary disease in this movie and whom did it affect?

The disease in the movie was Adrenoleukodystrophy (ALD) which, according to the movie, is an inborn error of metabolism that causes degeneration of the brain.  It destroys the myelin that surrounds the nerve cells.  It is carried by females and has a 50% chance of being passed to male offspring.   The first signs of the disease are seen in boys aged 5-10 years old.  In the movie, Lorenzo Odone had the disease.

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

            The disease starts out with a mild impact on the patient’s functional status. In the movie, Lorenzo’s behavior starts out with aggressive outbursts.  It is a progressive disease that moves quickly to reach a severe impact.  From the aggressive outbursts, he quickly moved into difficulty walking, talking and swallowing.  At that point, he was completely in need of around the clock care.  The movie indicated that most boys die within two years of diagnosis.

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

            In the beginning, the researchers felt that Lorenzo’s parents were being difficult, demanding and had no business questioning the practices of the medical doctors.  As the movie went on, the Odone’s brought specific research information to the researchers and they seemed more apt to listen to them when facts were being discussed.  In the end, they were impressed with the research, but I still think they were regarded as “parents of a sick boy.”

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

            The roles of the researchers were juxtaposed because the Odone’s were the ones bringing them the research and fact checking.  The Odone’s came up with their own hypothesis and research study.

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

            Dad knew that the faster the monounsaturated fatty acid chains were being created, the slower the bad chains were.  His breakthrough came when he realized that there was one enzyme for both genes that would both speed up the good chains and also slow down the bad.  The research doctor used the phrase “competitive inhibition” to describe the process.

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?

            Dad was concerned that Lorenzo’s friend was coming for a couple of reasons.  For one, he was concerned that they would be bringing an African Muslim, who didn’t even speak English, to this racist land.  He didn’t want to subject him to the discrimination that he would encounter.  Also, he was concerned that he would be walking into the situation without really knowing how bad it was and expected to be a caregiver for Lorenzo.

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)?

            The first human subject to consume the second oil was Lorenzo’s aunt.  She was also a carrier of the disease and felt that Lorenzo’s mother (her sister) should be the one to try it because she had to care for Lorenzo.  It was ingested by mouth in the form of a dressing for a salad.  It was dosed rather unscientifically by holding a class beaker in the air and measuring that way.  It certainly wasn’t an exact measurement.  When it was finally given to Lorenzo, it was ingested by putting it in a feeding tube through his nose.

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

            As with most things, money is needed before any research could begin.  If there was no money available, none of this would have been accomplished.  The Odone’s were the ones that funded the early groundbreaking research. They did have some support from other parents who had children afflicted with ALD.  They took it upon themselves to search for a company that would be able to extract the acid that they needed and paid for it out of their own pockets.

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?

            The researchers were not on one single path.  Everyone was off in their own little research world.  It took the Odone’s to gather them all together in a symposium so they could all hear about each other’s findings.  This allowed for conversations to flow back and forth and for new ideas to be generated.

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

            Does this represent an appropriate ethical model for research?  No, it doesn’t because technically you shouldn’t be testing “medication” on people without thorough testing prior.  On a personal note, I would have absolutely done the same thing as the Odone’s if it was one of my children.  If I thought for a moment that the oil could possibly help, then I would have taken the chance based on the alternatives.  If the Odone’s hadn’t taken the chance, their son most likely would have died in the next year.