As we approach Rare Disease Day, many science teachers are thinking of ways to introduce the topic of orphan diseases to their students. Fortunately, there is an excellent teaching module available that uses the subject of rare diseases to teach students how the body works, how doctors have to be scientific detectives to diagnose a rare disease, and how a child with a rare disease has to overcome obstacles to perform activities that healthier children may take for granted.
The module was developed for the NIH Office of Science Education and the NIH Office of Rare Diseases Research by the BSCS (Biological Sciences Curriculum Study) - a non-profit curriculum study organization committed to transforming science teaching and learning.Rare Disease Report had the privilege of talking with the project director of the module, Dr. Mark Bloom of the BSCS.
RDR: The Module you created, Rare Diseases and Scientific Inquiry is a great way to teach middle and high school students about rare diseases. Where did the idea come from?
Dr. Bloom: BSCS was selected by the NIH Office of Science Education to develop the curriculum module. We relied upon the NIH Office of Rare Diseases Research for scientific expertise. To the best of my knowledge, the module is unique. Other instructional materials I have seen are in the nature of informational brochures or consist of a single lesson devoted to one particular rare disease.
Who is the module intended for?
The module is aimed at middle school students studying the life sciences. However, it can be incorporated into high school classrooms as well.
How much teaching time is needed to complete the module?
The module consists of five lessons that require approximately ten, 45-minute class periods to complete.
Can you describe the key subjects that are covered in the module?
Students learn that diseases are associated with three types of causes: genetic, infectious, and environmental exposure. They learn to distinguish between rare and common diseases and understand that a rare disease may become common and a common disease may become rare. The lessons give students opportunities to practice scientific inquiry in a medical context. Three different diseases were chosen to help students appreciate the importance of medical research, both to diagnose and to treat or manage rare diseases. The disease case studies are presented in an engaging manner that is intended to help students develop empathy and reduce the stigma sometimes associated with rare diseases.
The example you provide in the module is a 13 year old boy with numerous ailments and each ailment treated by a different specialist (pulmonologist,cardiologist, orthopedist etc.) Was that example chosen on purpose?
Yes, we wanted to involve students with a rare disease that affects multiple body systems. This accomplished two goals. First, middle school is time when the workings of body systems are an important part of the curriculum. Second, the involvement of multiple body systems can complicate the process of obtaining an accurate diagnosis. This gives students a reason to practice their scientific inquiry skills while making a diagnosis.
The 13 year old boy with Marfan syndrome also illustrates that diagnosis is not always evident without 20/20 hindsight. That is common in the rare disease community (as is the frustration that a proper diagnosis can often takes years). Does the module specifically address those issues?
Yes. The lessons intentionally challenge students to consider both common and rare diseases when making a diagnosis. The difficulty of obtaining an accurate diagnosis is addressed in two of the lessons: one dealing with a rare disease caused by infection and the other being the Marfan syndrome case study.
The module also discusses scientific inquiry and how it relates to medical practice. Can you elaborate on that and how the subject of rare disease can be an excellent way to teach children about how the body works and how medical diagnoses follow the basic principles of scientific inquiry.
Scientific inquiry skills are essential to making a medical diagnosis that is based on evidence. The medical context helps students see how scientific inquiry is used to answer questions that are important to people’s lives. A disease such as Marfan involves a genetic mutation affecting connective tissue. Since connective tissue is found throughout the body, Marfan disease provides an engaging way for students to learn about connective tissue and the workings of multiple body systems. The importance of clinical trials to developing effective treatments is addressed in case involving childhood leukemia.
Since there are 20-30 million Americans with a rare diseases, odds are very likely that any given science class will have a child with a rare disease or have a child living with a family member with a rare disease. Do you think your module will allow students to be more comfortable talking about rare diseases that directly impact them?
We are aware that some students are uncomfortable with the idea of rare diseases and perhaps of interacting with someone affected by one. We made it an explicit goal of the module to humanize the rare diseases we covered. We did this by focusing on specific cases of young people living with rare diseases. Throughout the module students view videos made by young people with rare diseases discussing how their lives have been affected and how they have learned to succeed in life despite these obstacles. Survey data indicate that students who have experienced the lessons feel more comfortable talking about rare diseases and express increased empathy for those affected by them.
The BSCS has some amazing teaching modules for science teachers. Are there any other modules they have produced that are specific to medical inquiry or research? And are there any plans to expand on the rare disease module you developed for the NIH?
Yes, BSCS has developed 18 health related modules for the NIH curriculum supplement series. These materials are available free of charge to interested teachers (www.science.education.nih.gov/). We also have developed modules dealing with the human genome project and the application of evidence-based medicine (www.bscs.org). We have enjoyed working with the NIH’s Office of Rare Diseases and hope we can expand on the module we have created with them in the near future.
For more information about the module, visit www.science.education.nih.gov/supplements/nih10/diseases/default.htm