By Jessica Martin, PhD
FROM A FOOD ALLERGY PARENT TO THE ALLERGY AND IMMUNOLOGY SCIENTISTS/CLINICIANS
As a scientist, I love knowing how things work, knowledge for the sake of knowledge. If there are no answers in the literature, my mind immediately jumps to ways that experiments can be designed and executed to get answers. This is what a research scientist lives for. Why else would we put up with the 80% of failed experiments (n=1, my experience, p=0.5, my certainty that the 80% failure was due to chance)?! I honestly hope your experimental success rate is better than mine.
As a food-allergy mother, however, I’m not as enamored by the joys of scientific exploration. Through the minutia of experimental detail, we should never lose sight that our findings have the potential to make life easier for allergic individuals. I realize my words may not apply so much to the “clinician-scientist”, aka “doctor”, who sees patients regularly, but for the basic science researcher, like myself, who is pretty far removed from the clinic. Ultimately the goal of basic science research is to improve the lives of individuals for whom physiology has steered way off its normal homeostatic course.
One of my neuroscience research projects involved growing rat brainstem neurons in a dish and systematically manipulating each dish to determine factors important for how neurons elaborate their structure during the postnatal period. Why is this important? Sudden Infant Death Syndome (SIDS). The brainstem is crucial for regulating vital reflexes that control breathing and heart rate, and it turns out that abnormalities in how the circuitry in the brainstem develops are thought to underlie SIDS. The specific mechanisms, however, remain elusive. Thus, my tests of rat neurons in a culture dish were born, probing for factors controlling normal neuron elaboration. It was incredibly easy for me to lose sight of the importance of my research through nine months of producing unreliable neuronal cultures. Once those cultures were optimized, however, the successful science proceeded quite quickly. After I pulled myself away from the day-to-day trials of bench work to write up my findings, I once again saw the bigger picture: the ultimate goal of my research was to spare families from the burden of ineffable grief.
My advice—and I wish someone had given it to me–is become more connected to the clinic and the individuals directly affected by the disorder you study. Knowing what I know now, if and when I return to research science pertaining to allergic disorders, my sons’ allergies will give me the impetus to move forward through the inevitable failures bound to happen in research science. Getting to know allergic individuals will provide incredible motivation, and as a bonus, they may provide you with clues for your next big research question that you didn’t even think to ask. That extra motivation or inspired new line of research could mean the difference of many months or even years in waiting to translate basic science findings to the clinic. Oh, and food allergy parents/allergic individuals would love to mingle with you and get the leading-edge science straight from the horse’s mouth instead of filtered, often hyperbolically, through the mainstream media. It’s a win-win. The danger, of course, is “confirmation bias”, i.e. becoming so dedicated to an outcome that it might compromise your findings. Fortunately, we have peer review keeping us honest.
Whether we are a basic research scientist or scientist clinician, we must be able to honestly communicate complex science and medical conditions to the people most affected by them. What is myth? What is fact? Do we distinguish between theories and hypotheses? We need to freely acknowledge the strengths, but more importantly the limitations of our studies, especially if those studies result in a press-release. Doctors shouldn’t be afraid to acknowledge when the best advice is an honest crap-shoot based on incomplete scientific evidence. And by all means show a bit of humility when there seems to be a 180-degree reversal of the conventional wisdom! The current guidelines by the American Academy of Pediatrics of when to introduce highly allergenic solid foods to infants are a case in point, complete with a mention on the Today Show. There is nothing more infuriating and demoralizing to the food-allergy parent than reversing allergy dogma that seems to go against their personal experience. Think of a five-month-old infant in the throes of eczema, who later went on to develop an egg allergy at twelve months. The parents were likely terrified to introduce highly allergenic foods because of eczema, and now new guidelines say “never mind.” A surefire recipe for guilt and anger. We need to better communicate that guidelines are just that, guidelines. It likely applies to many, but certainly not all cases. This point tends to be glossed over in the reporting of science.
A final point is to encourage open dialogue between allergy parents/allergic individuals and experts. Before I became an “expert” in my own field (whenever that happened!), and I realized just how much we do not know, I assumed experts somewhere had all the answers and that I just had to learn it. In many ways, when my son was first diagnosed with food allergies, I assumed that allergy/immunology experts knew way more than they do. As I have personally embarked on a journey to understand allergies, it is painfully obvious that the waters are quite murky. How many parents/individuals out there are like me–assuming the knowledge base is much broader than it is–too timid to ask “dumb” questions? One reflection of that is allergy testing. For example, having allergen-specific IgE antibodies is clearly not the entire picture for diagnosing allergy. But why? How do we disseminate factually accurate information to food allergy parents or allergic individuals? The many uncertainties in diagnosing and predicting allergic reactions, much less curing them, leaves the Internet door open for speculation, misinformation, and fringe “treatments.” Open, honest dialogue would be highly beneficial. I realize that one allergist appointment is not nearly enough time for this endeavor, but what about regular clinician/scientist-guided support groups? I personally acknowledge my limitations to “preach” since I am not a clinician, but my experience in teaching college introductory anatomy and physiology tells me I have often assumed my students knew more than they actually did. I have learned to repeat, multiple times, the same important piece of information I want them to know. Even then, I am still surprised by how many students get the question wrong on an exam.
Advice from a scientist to a food allergy parent:
1. Understand the difference between irrational fear and necessary vigilance when managing food allergies. It will depend on your unique situation. Let your allergist help you find the optimal balance.
2. Be aware of your own biases. Look at all scientific evidence, not just your favorite hypotheses.
3. The latest allergy science reported in the media is not a replacement for advice from your allergist.
Advice from a food allergy parent to a scientist/research clinician:
1. Remember that the knowledge you seek in your research will directly impact allergic individuals and their families. Find motivation. Get to know individuals affected by the disease you study.
2. Practice humility. When answering questions, provide what we know and freely acknowledge what we do not know. Convey that sometimes our best advice is unfortunately based on incomplete data.
3. Listen to and know the concerns and fears of food allergy parents and patients. You would be surprised that what you think is common knowledge for most, may in fact not be.
Jessica Martin earned a Ph.D. in Neuroscience from Oregon Health and Science University in 2011. She lives in the Portland, Oregon area with her husband Jason and their sons where she teaches undergraduate biology and anatomy and physiology at Portland Community College. Although not currently engaged in cutting-edge laboratory science, she continues to actively research current findings in allergy and immunology, where she writes about some of those findings on her blog, The Food Allergy Sleuth. She aspires to eventually return to the trenches of doing laboratory science in allergy and immunology, but for now, her life is happily filled to the brim with being a Mom, an educator, a writer, and as most food allergy sufferers and parents already know, part-time cook.
Photo courtesy of Dustin Johnsen, Ph.D.