Lorenzo's Oil as a Vehicle for Teaching Chemistry ... - ACS Publications

Aug 1, 2011 - ABSTRACT: The film Lorenzo's Oil depicts the challenges faced by the parents of a child with adrenoleukodystrophy, a neurological disord...
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Lorenzo’s Oil as a Vehicle for Teaching Chemistry Content, Processes of Science, and Sociology of Science in a General Education Chemistry Classroom Donald Wink* Department of Chemistry, University of Illinois at Chicago, Chicago, Illinois 60607, United States ABSTRACT: The film Lorenzo’s Oil depicts the challenges faced by the parents of a child with adrenoleukodystrophy, a neurological disorder that, they were told, was certainly fatal. The film contains a significant amount of chemistry, including concepts of fatty acid metabolism, enzyme inhibition, and the purification of substances. The film also raises important issues associated with “who does science?” and “who decides what science is done?” Those sociological issues are important in engaging nonscience majors in the learning of science and the film has been used for several years at the beginning of a course for elementary education majors. A thematically similar film, Extraordinary Measures, is also discussed. KEYWORDS: First-Year Undergraduate/General, General Public, Public Understanding/Outreach, Communication/Writing, Drugs/Pharmaceuticals, Fatty Acids, Nonmajor Courses “why?” and “who?” questions permits us to make the instrumentalism of science clearer to students. Instrumentalism is the concept that what we do, including what we do in science, can and should be viewed from its standpoint of how well it helps us to address current or anticipated needs and challenges.10,11 An instrumentalist perspective also opens up instruction to the idea that students should see how “social and personal perspectives”, one of the National Science Education Standards,12 are involved in learning and doing science. This prompts students to reflect on their own understanding of their relationship to science, potentially allowing for deeper relevance and connection within their learning.13 17

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his paper reports on the use of multiple aspects of the 1992 George Miller film Lorenzo’s Oil1 in a general education chemistry course focused on preservice elementary education majors. First, the film has specific examples of chemistry that relate to organic chemistry and biochemistry. Second, the film includes a presentation of several issues in the sociology of science that provide a very effective way of bringing up these issues for students to consider. (Note: in order to focus on the classroom use of the film, this paper necessarily “spoils” the film.) The use of popular film in teaching chemistry has been discussed by several authors before. Specific clips from several films, including Lorenzo’s Oil, have been used in general chemistry.2 In addition, Goll and co-workers have discussed extensive work done with entire films (Apollo 13, From the Earth to the Moon, October Sky, and The Girl with the Yellow Hands) in various undergraduate courses.3 6 Griep and Mikasen used the films Dr. Ehrlich’s Magic Bullet and Me and Isaac Newton as the basis of writing assignments about the content and process used in chemical research.7 They also have a book that compiles many dozens of films with potential for use in the science classroom.8 The major focus of these reports is on how particular chemical concepts and, on occasion, the processes of chemistry are shown in the films. This includes, for example, the discussion of how lithium hydroxide canisters on spacecraft remove carbon dioxide from a recirculating atmosphere.3 However, as Griep and Mikasen point out, the popular orientation of many films means that many films contain relatively little actual chemistry discussions, as when the film Awakenings leaves out any discussion of the biochemical action of L-DOPA. This creates an opportunity for an instructor to use the film as a setup for students to explore the chemistry outside of the film itself, which is a major thrust of the work of Goll and co-workers. In this paper, Lorenzo’s Oil is used both for its potential for teaching chemistry and also to introduce students to some of the premises of scientific work: “why?” questions about what research is done and “who?” questions about who does research and who influences research.9 Focusing part of instruction on Copyright r 2011 American Chemical Society and Division of Chemical Education, Inc.

’ LORENZO’S OIL AND THE CONTENT AND PROCESS OF SCIENCE Although it is a popular film, Lorenzo’s Oil devotes a significant amount of time to presenting content and process of science. The film explains well that adrenoleukodystrophy (ALD) is an X-linked disease where a metabolic defect prevents victims from metabolizing some very long chain fatty acids (VLCFA). Buildup of VLCFA in the blood damages the lipid-rich myelin sheath of nerve cells, and the resulting neurodegeneration is, if left unchecked, fatal. When the boy at the center of the film, Lorenzo Odone (played by Zack O’Malley Greenburg), develops the symptoms of the disease and is diagnosed, he is put on a diet to withdraw these fats from the diet, but the levels of fats rise anyway because of compensating biosynthesis. The development of a treatment, “Lorenzo’s Oil”, a mixture of the triglycerides of oleic and erucic acids, is led by his parents, Augusto and Michaela Odone (played by Nick Nolte and Susan Sarandon). The oil effectively inhibits biosynthesis of longer chain fatty acids—the ones that build up and do damage. Lorenzo’s Oil provides several points of reference for teaching basic content of chemistry. A clip about the way that metabolism Published: August 01, 2011 1380

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Journal of Chemical Education depends on kinetics illustrates for general chemistry students how mechanism matters in chemistry,2 though this topic is too complex for a detailed discussion in a general education course. But general education students can understand and learn from the film’s discussion of the structure of fatty acids and their triglycerides in lessons about nutritional chemistry. So the film serves as a place to discuss the proper and potentially deleterious effects of fats and oils in the diet. Polymers are also an important topic in general education chemistry and, although fatty acid biosynthesis does not involve polymerization per se, the film includes an evocative dream sequence involving images of paper clips that is an engaging introduction to the question of molecular synthesis by oligomerization. Finally, a critical question in the film is the availability of highly purified samples of the triglycerides of oleic acid and of erucic acid. This serves as a link to questions of mixtures and purity. Indeed, one of the heroes of the film is a British chemist who laboriously fractionates oils to get the pure erucic acid triglyceride they need, uniquely played in the film by the actual person, Don Suddaby, who did that vital step. In addition to this content coverage, the process of science is one of the key “actors” in the film. The Odones quickly learn that ALD is an “orphan” disease, with too few victims to warrant largescale research. Thus, they undertake the effort to increase research and, eventually, become researchers themselves. Along the way, the role of scientific communication is highlighted, as they initiate an international conference on the disease. The need for different aspects of the research pipeline to work together to bring theory to practice is also highlighted, especially in the form of finding sources for the compounds that become part of Lorenzo’s oil. The film also discusses issues surrounding the way that controlled studies are needed to ascertain the true effect of a variable, in this case the administration of the oil. Confronted by a fatal disease with rapid progression, the Odones are understandably reluctant to submit to an experimental protocol. Instead, they proceed with administering the oil without a control group. This means some may question whether it is a good idea to present the film to students of science, as it arguably presents uncontrolled science as an acceptable procedure. The work on the oil had been published in the standard scientific literature at the time of its development18,19 but it was not supported by a full clinical, randomized study. The controversy about the process of science was heightened by the film itself, especially because the Odones’ challenge to “conventional” scientists and doctors is presented in extremely dramatic terms by the film. This led the main researcher at the time, Hugo Moser (whose name is changed to Professor Nikolais and played by Peter Ustinov in the film) to denounce aspects of the film when it was released. As he wrote, the film “overstates the success that can be achieved with the oil, it invents conflicts between the parents and the medical establishment, and it presents an inaccurate and malicious portrayal of a valued parents’ organization.”20 Moser had always worked well and closely with the Odones and he led research to provide full scientific validation of the use of the oil. In one of his last publications before his death in 2005, Moser and his co-workers (which included Lorenzo’s father, Augusto) concluded, “in this single-armed study, hexacosanoic acid reduction by Lorenzo’s oil was associated with reduced risk of developing MRI abnormalities. We recommend Lorenzo’s oil therapy in asymptomatic boys with X-linked adrenoleukodystrophy who have normal MRI results.”21

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’ LORENZO’S OIL AND THE SOCIOLOGY OF SCIENCE The unique role played by the Odone parents in the story of Lorenzo’s Oil means the film is an excellent opportunity to raise questions about the premises of science, with questions like “who does science?” and “how is science explained to the general public?” These questions are the subjects of the fields of science education,10 history of science,22 philosophy of science,23 psychology of science,24 and sociology of science.25 But those studies generally concern science as a community of scientists, not how the public encounters science. How the public encounters and participates in science can occur in many ways, some of which, it must be admitted, can be nonproductive and even unsafe. In a positive way, there are examples, such as in Lorenzo’s Oil, that show how individuals can learn enough about science content and process that they can influence what science is done. The same is found in examples of those who explore scientific areas on their own, often in natural settings. Jane Goodall’s work with chimpanzees, which has now expanded to an entire research institute,26 serves as an example of this. However, it should be noted that those efforts were linked closely to the conventional science community: they did not just operate as a form of personal empiricism, with the risk of quackery.27 The question of the public understanding of science is a neglected part of discussions about curricula content and methods. There is widespread recognition that an educated electorate is important because of voters’ role in electing officials who set policy and funding priorities in science and this is a important point in arguments for increasing science literacy.10,28 But that still begs the question: how do people actually encounter science, and how should we describe this to our students? It is here that Lorenzo’s Oil, as a well-presented story of how some “regular” people encounter and participate in science, is especially effective. One conventional view of how the public should understand science is as a body of knowledge that scientists “have” and that the public can know, but not participate in. This is, for example, one of the arguments that Trefil advances in an argument that science instruction should focus on content, not processes and premises.28 In that view, most students should know the findings of science, but because they will not need to “do” science, they do not need to know how science is done. A second and quite opposite view of what to teach in science is held by those who see the need for science to be understood as a process by students. This begins with Dewey, who saw that learning the “method” of science, not just the “subject matter” was essential to educating students in the habits of inquiry they need for all areas, concluding, “Actively to participate in the making of knowledge is the highest prerogative of man and the only warrant of his freedom.”29 More recently, authors with very different perspectives on the history and philosophy of science have continued with similar calls to educate students in how to “do” science as a key way to develop their values30,31 and, perhaps, to enable nonscientists to participate actively, not passively, in deciding what happens in science.32,33 This second view is very much aligned with the story of Lorenzo’s Oil, which also makes the point that understanding how science “works” is a necessary tool of good parenting: as Augusto says before he and his wife embark on their self-education project, “Let us not consign him [Lorenzo] blindly into their [the doctors’] hands. He should not suffer by our ignorance.” 1381

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Some of these points have already been explored in reports on the use of Lorenzo’s Oil in courses educating health professionals. Jones used the film with medical students, valuing in particular how the film can drive discussions of the “conflict between the goals of physician researchers and those of terminally ill patients and their families” and can help prepare physicians for how to discuss treatment options with patients.34 In another medical education context, with pharmacy students, Farre and co-workers used the film to illustrate many aspects of medical science, including the bioethics of treatment decisions and the ways in which scientific validity is or is not understood by the public.35 However, there have been no prior discussions of these or other sociological questions in the context of a college science classroom.

’ USING LORENZO’S OIL IN A GENERAL EDUCATION COURSE As indicated, Lorenzo’s Oil has been used as a major part of a unit that starts a nonmajors chemistry course primarily aimed at preservice elementary education majors.36 The purpose of the unit is to engage students in the course by opening up their thinking to new ways of relating to science. Students are assigned to watch the film on their own time during the first week of class. If this is difficult for students to arrange, then a public viewing of the film is scheduled out of class time. The students are directed to watch the film in the light of two topical questions used to start the class: “Who does science?” and “Science and personal meaning”. The class discussion of the movie asks the students to reflect on the movie as a depiction of how individuals might encounter science. During the discussion, the following roles (all exhibited by the Odones) are noted. The Odones are: • Consumers of science findings in selecting care for their child • Originators of ideas (they develop the idea of inhibiting the biosynthesis) • Purchasers of chemical substances (the components of Lorenzo’s oil) that they have identified • Funders of research conferences and the philanthropy of The Myelin Project In the discussion, students are asked to consider how they also make decisions about choices of health options and fund scientific research through taxes and their own donations of time and money. At the same time, the discussion also covers how the Odones were working with the tools of conventional science: making decisions based on data and the viewpoint of molecular biochemistry. This is an important point to show how even “nonconventional” science originates within the well-established paradigms of molecular interactions, empirical testing of results, and review by the general scientific community.23 Students are assessed on their understanding of the film through the assignments of the course. One of these is a journal assignment, done on a biweekly basis.37 Of the 29 students in the course who gave consent to be part of research, 14 mentioned the film directly in their journal. Examples of their comments include: This is where I believe that it is evident that if you want something bad enough, that everyone has the power to be a scientist. If Lorenzo’s parents’ hadn’t taken it upon themselves to become the scientists in this situation, many more boys would have died without the oil. This proves exactly

how vital of a role science plays in our lives and that anyone can be a scientist if they put their mind to it. When I think of scientists, I think of very smart men that went through years of school and spend most of their time in a lab. However, I recently learned that, that’s not always the case. Watching Lorenzo’s Oil made me realize that a regular person can be a scientist. That is not to say that just any person can say I’m a scientist but more like that he/she can learn and make themselves just as smart and knowledgeable as any scientist. I’m excited to learn about science now. After seeing what science can really do and how it’s everywhere around us, really made me think. The meaning of the film in students’ thinking is shown in two other assignments. The final exam for the course includes a list of 8 of the 20 topics from the course and students are asked to write a reflective essay on two of them. Students do not know in advance which topics will be offered as options, but they are encouraged to review their work during the semester in preparation (although they are not allowed to bring work into the final exam). Two of the students directly referred to Lorenzo’s Oil in their final exams. One wrote, from a perspective of three months later: As we learned in Lorenzo’s Oil, even if the chance for a great scientific discovery is possible, a scientist has to be found to do it who has personal interest, as well as funding has to be made available. Therefore, personal meaning and personal interest have a great impact on science. They determine what science will be studied, which issues are most important, and the practical uses of science in everyday life that will or will not be used. The other later assignment is a “big theme project” that students individually prepare during the course of the semester, including a culminating paper and presentation.38 Many students write about health issues, often working from the organizing theme of the Chemistry and Life unit, which deals in part with the chemistry of nutrition. But some students use their big theme project to explore a disease related to a metabolic disease. This includes a student who had phenylketonuria (PKU), a condition in which phenyalanine is not metabolized properly. In that case, dietary restriction is sufficient to control the disease. Another student did a project on a different metabolic disease, Leigh’s syndrome. In her first journal assignment, reflecting on Lorenzo’s Oil, she wrote: My cousin’s daughter passed away as a result of a disease she had that was not well researched. I became very interested in learning more about how I could help influence the study and research of that certain disease. Leigh’s syndrome is another example of a little-studied, very rare, and incurable disease that causes a failure of mitochondrial energy production, especially in aerobic metabolism. The instructor had to point out that successful stories like Lorenzo’s Oil are highly unlikely, but that the course project could be a place to explore what does occur during treatments for the disease. In this case, the problems in metabolism cause a buildup of carbon dioxide in the blood; the student came to understand 1382

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Journal of Chemical Education why bicarbonate is used to treat children, lessening symptoms but ultimately not preventing the fatal progression of the disease.

’ EXTRAORDINARY MEASURES In 2009, CBS Films released the Tom Vaughn film Extraordinary Measures, which covers another true story of a family that works to change the course of scientific research in the face of the certain fatal outcome of their children’s metabolic, genetic disease.39 The film also has the potential to support student thinking about how science is conducted, especially with orphan diseases. The story includes two parents, John and Aileen Crowley (their actual names, played by Brendan Fraser and Keri Russell) and one scientist in particular, Robert Stonehill (based on a scientist named William Canfield and played by Harrison Ford, who was also the executive producer of the film). Two of the Crowley children have Pompe’s disease, which involves a defective enzyme for the breakdown of glycogen in cells. The buildup of glycogen causes problems in cellular activity, including the loss of muscle function, making the disease an example of a muscular dystrophy. In this case, the victims are not compromised cognitively. The film depicts how John Crowley and Stonehill start a business to support research on one possible therapy for Pompe’s disease. Eventually, their company is bought by a much larger company and their treatment candidate becomes part of a set of possible cures; the selection of one candidate for use in actual treatment by the larger company then becomes the basis for the second half of the film. The film shows a process of the development of a treatment that is much more conventional than that depicted in Lorenzo’s Oil. For example, Extraordinary Measures includes a comparison study to select which of the four candidate treatments is advanced to clinical trials. It does contain important discussions about how science is conducted, including the influence of corporate decision making and on whether the emotional effect of patient outcomes should or should not be allowed to influence the researchers. As one of the corporate mangers says to John Crowley in the film, “If researchers get all emotional, all desperate to help suffering patients, they’ll cut corners. It’s counterproductive.” However, in contrast to the direct presentation of the chemistry in Lorenzo’s Oil, there is relatively little discussion of biochemistry and no discussion of genetics in Extraordinary Measures. On the other hand, there is a much more extensive record of the “true” story available for the Crowley’s story, including information on the site of Genzyme (called Zymagen in the film), the company that developed the treatment with Crowley and Canfield.40 ’ CONCLUSION The potential for use of popular film in classroom settings is now well established, both in terms of segments of films and with entire films.2 8 By putting chemistry content and the discussion of how science is done in the context of engaging stories, most drawn from actual events, instructors can situate student learning in relevant ways. In the case of the film Lorenzo’s Oil, the additional story line of “normal” people who need to learn and to a certain extent conduct science adds an element that permits the additional discussion of the premises of science. This, then, has the additional potential to shift how students view themselves in relation to science, turning them from passive into more active participants in the field.

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’ AUTHOR INFORMATION Corresponding Author

*E-mail: [email protected].

’ ACKNOWLEDGMENT The initial development of this work was supported by the National Science Foundation (DUE-0311624). Assistance by Michael Dianovsky in the review of student work in the project is gratefully acknowledged. I thank a reviewer for the suggestion of including an example of the independent science of naturalists (Goodall). ’ REFERENCES (1) The Internet Movie Database entry for the film, Lorenzo’s Oil. http://www.imdb.com/title/tt0104756/ (accessed Jul 2011). (2) Wink, D. J. J. Chem. Educ. 2001, 78, 481. (3) Goll, J. G.; Woods, B. J. J. Chem. Educ. 1999, 76, 506–508. (4) Goll, J. G.; Mundinger, S. L. J. Chem. Educ. 2003, 80, 292–293. (5) Goll, J. G.; Wilkinson, L. J.; Snell, D. M. J J. Chem. Educ. 2009, 86, 177–180. (6) Goll, J. G.; Ley, J. L.; Nytes, T. M. Chem. Educat. 2008, 13, 3–5. (7) Griep, M. A.; Mikasen, M. L. J. Chem. Educ. 2005, 82, 1501– 1503. (8) Griep, M. A.; Mikasen, M. L. ReAction!: Chemistry in the Movies; Oxford University Press: New York, 2009. (9) Wink, D. J. Found. Chem. 2006, 8, 111–151. (10) Rudolph, J. L. Sci. Educ. 2005, 89, 803–821. (11) Taber, K. S. J. Chem. Educ. 2010, 87, 552–558. (12) Wink, D. J.; Daubenmire, P. L.; Brennan, S. K.; Cunningham, S. A. Bringing Standards-Based Chemistry Instruction to an Urban School District. In Chemistry and the National Science Education Standards, 2nd ed.; Bretz, S> L., Ed.; American Chemical Society: Washington, DC, 2008. (13) Wink, D. J. Relevance and Learning Theory. In The Chemists’ Guide to Effective Teaching; Pienta, N. J., Greenbowe, T., Cooper, M., Eds.; Prentice Hall: Upper Saddle River, NJ, 2005. (14) Wink, D. J. Philosophical, Cognitive, and Sociological Roots for Connections in Chemistry Teaching and Learning. In Making Chemistry Relevant: Strategies for Including All Students in a Learner- Sensitive Environment; Basu-Dutt, S., Ed.; Wiley: New York, 2010; pp 1 26. (15) Clark, C. C. Sci. Educ. 1933, 17, 312–320. (16) Schibeci, R. A. Sci. Educ. 1986, 70, 139–149. (17) Dhingra, K. J. Res. Sci. Teach. 2003, 40, 234–256. (18) Moser, H. W.; Raymond, G. V.; Lu, S.-E.; Muenz, L. R.; Moser, A. B.; Xu, J.; Jones, R. O.; Loes, D. J.; Melhem, E. R.; Dubey, P.; Bezman, L.; Brereton, N. H.; Odone, A. Arch. Neurol. 2005, 62, 1073–1080. (19) Rizzo, W. B.; Leshner, R. T.; Odone, A.; Dammann, A. L.; Craft, D. A.; Jensen, M. E.; Jennings, S. S.; Davis, S.; Jaitly, R.; Sgro, J. A. Neurology 1989, 39, 1415–1420. (20) Moser, H. W. Lancet 1993, 341, 544. (21) Moser, H. W.; Raymond, G. V.; Lu, S.-E.; Muenz, L. R.; Moser, A. B.; Xu, J.; Jones, R. O.; Loes, D. J.; Melhem, E. R.; Dubey, P.; Bezman, L.; Brereton, N. H.; Odone, A. Arch. Neurol. 2005, 62, 1073–1080. (22) Kuhn, T. S. The Structure of Scientific Revolutions, 3rd ed.; University of Chicago Press: Chicago, IL, 1996. (23) Longino, H. The Fate of Knowledge; Princeton University Press: Princeton, NJ, 2001. (24) Gopnik, A. Philos. Sci. 1996, 63, 485–514. (25) Fuller, S. Governance of Science: Ideology and the Future of the Open Society; Open University Press: Buckingham, 1999. (26) The Jane Goodall Research Institute. http://www.janegoodall. org/ (accessed Jul 2011). (27) Sampson, W. Antiscience Trends in the Rise of the “Alternative Medicine” Movement. In The Flight from Science and Reason; Gross, 1383

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