by?Tyler Joseph White (COL ?14)
This past summer I had the privilege of collaborating with faculty from the Georgetown University Center for Child and Human Development (GUCCHD), designing methodology for a forthcoming research project that aims to evaluate the quality of Individualized Family Service Plans (IFSPs) recently created by Strong Start, the District of Columbia?s Early Intervention Program. ?After we, as a team, designed our study?s experimental methodology, I was entrusted with the task of completing the study proposal that would be submitted to Georgetown University?s Institutional Review Board, or IRB.? The IRB reviews every research project involving human subjects and?contingent upon sound study design?formally grants permission for Georgetown faculty, students, and staff to conduct any of their proposed research (Georgetown University IRB).
In undertaking this assignment, I was responsible for, among other things, articulating our study?s procedural safeguards, designing participant recruitment materials, and drafting informed consent forms.
To be quite honest, much of this IRB-related work?and there was a lot of it?seemed rather tedious, inglorious, and?perhaps?even unnecessary.? I was, after all, working with experienced researchers on a pilot project portending minimal to no risk for all of its study participants; why, then, did I have to put so much effort into pedantically explaining everything that we planned on doing when we could instead have just gone ahead and gotten to work collecting data and beginning to answer our research questions?
However, while I was working on this ostensively burdensome IRB study proposal, I happened to read Whitaker?s Mad in America. ?I was moved by Whitaker?s expose of ethically ambiguous schizophrenia exacerbation studies?or, as this author (2010) so poignantly termed them, ?experiments that were done on the mentally ill? (p. 234)?and prominent scientists? subterfuges used to gain patients? ?informed? consent for such questionable projects (pp. 234-250).
Whitaker noted?among other things?that researchers conducting symptom exacerbation studies at the University of Maryland neglected to explicitly inform potential research participants about the true purpose of their study, ?to make the patients worse? (p. 245), instead assuring such individuals that ?no altered level of consciousness will occur? (as quoted in Whitaker, p. 245). ?Other researchers ?consented? acutely psychotic hospital patients, whom they purported to be lucid (p. 243).? Rationalizing such dubious decisions, psychiatrist Stephen Strakowski noted: ?If you work with these patients, the vast majority are clearly capable of discussing any research protocol and making a reasonable decision.? It is a stigmatizing view that people with mental illness can?t make that decision? (as quoted in Whitaker, p. 243).
On the one hand, hearing about such stratagems deeply disturbed me; however, on the other hand, thinking about these seemingly unethical research endeavors challenged me to take a step back and recognize the importance of the, at times, seemingly tedious toils?the nuts and bolts of scientific research?that I had spent much of the past summer tackling.
Reflecting on the work that I did?as banal as it at times seemed to be?enabled me to appreciate a number of important lessons that I had learned about conducting empirical scientific research.
I, first and foremost, realized that research requires?and also begets?more research.? Before I could even think about filling out the Georgetown IRB study proposal, I had to first familiarize myself with the field of early childhood intervention.
In addition to doing a great deal of background reading, I attended a professional development conference entitled, ?Contemporary Practices in Early Childhood Intervention,? which was sponsored by the GUCCHD. ?Additionally, I paged through Part C of the Individuals with Disabilities Education Improvement Act of 2004, or IDEA, which highlights the federal government?s longstanding policy that States provide ?early intervention services for infants and toddlers with disabilities and their families? (?631). ?I discovered that the focal point of good early intervention services ought to be the family as a whole, and not just the young child with the disability or delay (Krauss, 1990), and I also learned that early intervention services were delivered to over 320,000 infants and toddlers with disabilities or delays and their families throughout the 2007-2008 school year (U. S. Department of Education, 2010).? Clearly early childhood intervention is relevant for many families across the country, many more than I would have ever imagined.
While this is just a smattering of what I learned this past summer about the field of early childhood intervention, the general lesson that I took away from this experience is that if I ever want to study a particular scientific topic or field, I will first need to familiarize myself with as much relevant extant literature as possible.? Conducting such a literature review could provide me with new research questions, novel ideas, and unique methodologies that might inform whatever work I plan on doing.? For example, reading about the National Early Intervention Longitudinal Study, or NEILS?a project conducted well over a decade ago (Hebbeler et al., 2007)?helped my research team and me to better focus our study by providing us with previously utilized experimental methods and instruments that could be adopted or adapted by us to fit our current needs and present research interests.
Additionally, directly experiencing the collaborative and iterative nature of scientific research greatly helped me to gradually develop a sense of scientific competence vis-?-vis the field of early childhood intervention in particular, and empirical research in general.? I primarily worked with two physical therapists, Dr. Toby Long and Dr. Rachel Brady, as well as Dr. Deborah Perry, an early childhood mental health expert. ?These academicians? diverse backgrounds contributed to our study?s eclectic experimental design, which was constantly modified throughout the summer as we critically reflected upon the corpus of early intervention literature.
Having contemplated these important learned lessons during a midsummer day?s deliberation, the task of completing the IFSP project?s IRB study proposal seemed much less burdensome?it was, as my pre-calculus teacher used to quip when we were learning something new in high school, ?almost fun.?
In ironing out the study?s experimental methodology and specifying procedural safeguards, I had the opportunity to better understand important issues related to human subjects? protection. ?For example, my team?s decision to conduct anonymous telephone interviews with caregivers of children receiving early intervention services promised to minimize potential harm to participants.? By choosing not to collect personally identifiable data, we avoided whatever harm could possibly result from a potential breach of confidentiality.
Ultimately, designing our project?s informed consent forms was the most rewarding experience among all the research-related tasks that I completed this past summer.? While the American Psychological Association?and, in a similar vein, the Georgetown University IRB?has a laundry list of what must be included in informed consent forms?for example, ?[1] the purpose of the research? [4] ? potential risks, discomfort, or adverse effects? [6] limits of confidentiality???this somewhat daunting enumeration is designed in accordance with a profound respect for study participants (APA, 2010, p. 3 and 10), something not necessarily evident in the symptom exacerbation studies cited by Whitaker (2010).
In composing our study?s informed consent forms, I was presented with the opportunity to inform laymen and laywomen about scientific research, my team?s study and our goals, and what the potential benefits of voluntary participation in scientific research might be. ?I, thus, was able to share my passion for conducting scientific research with others, in the hopes that they, too, might become excited about the work my team was planning on doing.
Now that is an invaluable opportunity I would willingly consent to re-experience!
References
American Psychological Association (2010).? Ethical principles of psychologists and?code of conduct, including 2010 amendments, 1-15.? Retrieved from?http://www.apa.org/ethics/code/index.aspx
Georgetown University Institutional Review Board (IRB).? General information.?Retrieved from http://ora.georgetown.edu/irb/
Hebbeler, K., Spiker, D., Bailey, D., Scarborough, A., Mallik, S., Simeonsson, R., . . . Nelson, L. (2007).? Early intervention for infants and toddlers with disabilities and their families: Participants, services, and outcomes.? Final report of the National?Early Intervention Longitudinal Study (NEILS), 1-1-A-3.? Retrieved from http://www.sri.com/work/publications/national-early-intervention-longitudinal-study-neils-final-report
Individuals with Disabilities Education Improvement Act of 2004, Pub. L. No. 108-446,??631-644, 118 Stat. 2647 (December 3).? Retrieved from http://www.copyright.gov/legislation/pl108-446.pdf
Krauss, M. W. (1990).? New precedent in family policy: Individualized Family Service?Plan.? Exceptional Children, 56(5), 388-395.
U.S. Department of Education, Office of Special Education and Rehabilitative Services?(November 2010). ?Thirty-five years of progress in educating children with?disabilities through IDEA, 1-12.? Retrieved from http://www2.ed.gov/about/offices/list/osers/idea35/history/index.html
Whitaker, R. (2010).? Mad in America: Bad science, bad medicine, and the enduring?mistreatment of the mentally ill.? New York: Basic Books.
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