Ethical Issues in Literacy Research

Carole S. Rhodes, Kenneth J. Weiss

• Publisher: Routledge
• Year: 2013
• eBook ISBN: 9781136287190
• Topic: Education
• Subtopic: Education General

Literacy educators and researchers at all stages of their careers face ethical issues whenever they embark on research studies. In this book experienced literacy researchers identify and address multi-faceted, multi-dimensional ethical issues related to conducting studies in school, home, community, and virtual settings and share actions taken when faced with ethical dilemmas in their own investigations. Each chapter addresses a specific literacy research ethical issue. Part I focuses on conducting research in settings such as schools or literacy clinics. Part Two addresses research with pre-service teachers in college/university and school settings. Part Three looks at research in virtual worlds and online environments. Pedagogical features in each chapter engage readers in making connections between what they are reading and their own teaching and learning situations: A vignette to help readers understand the issue; pre-reading questions ; background information drawn from current research literature; suggested engagement activities; chapter summary. Additional resources (PowerPoint Presentations; Case Studies; Website Links; Interactive "Ask the Researcher Websites/Blogs/Tweets") are available on a website linked to the book: www.LiteracyResearchEthics.com

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INTRODUCTION

The Advancement and Significance of Protecting Human Subjects

Carole S. Rhodes and Kenneth J. Weiss

Literacy Research Ethical Issue

Susan Kaye, a professor of literacy at a major university, had a professional conflict with Professor X more than 10 years ago. They disagreed on a curriculum issue. Now, a decade later, Professor X is the head of the university’s Institutional Review Board (IRB). Professor Kaye is a volunteer in a major research hospital for children where they have instituted a special program to enhance the quality of life for children with cancer. The hospital’s IRB has approved a study designed to evaluate this program. They have asked Professor Kaye to help them with the study. The hospital’s IRB approval should be sufficient, but Professor Kaye thinks that it is ethical to also have her university IRB’s approval. She proceeds to complete the forms using the exact items that were approved by the hospital. Professor X throws so many roadblocks in the way that Professor Kaye finally has to withdraw from the study. Thus, even though in the past there was reciprocity between the medical institution and the university, the head of the university’s IRB hampered the process. This was clearly a case of lack of consistency as well as personality conflicts in IRBs.

Pre-reading Questions

• Why are there Institutional Review Boards?

• What is the purpose of Institutional Review Boards?

• What conflicts can result from IRB reviews and how can they be remedied?

Background

Ethical protections in research have undergone great transitions in the past half-century. Rules and regulations for conducting research emerged when, in 1945, an international military tribunal was convened to investigate allegations of crimes in concentration camps. This tribunal, commonly called the Nuremberg Trials, charged German doctors and overseers with crimes against prisoners. Doctors performed medical experiments on thousands of concentration camp prisoners without their consent. In 1948, the Nuremberg Code was promulgated. This code ordained that all participants in research studies must give their consent before participating and that the benefits of the research “must outweigh the risks.”

From 1932 to 1972, the U.S. Public Health Service conducted research on hundreds of African American men, most of whom were illiterate and from very poor counties, in Alabama. Nearly two-thirds of these men had syphilis. During the 40-year span of the so-called Tuskegee Syphilis Experiment, the men were not told of their disease, nor were they given any medical treatment—even when in the 1950s penicillin was found to be a cure. The study was ultimately publicized and stopped in 1973 by the U.S. Department of Health, Education, and Welfare. In 1997, President Clinton apologized to the eight surviving men, stating that the United States government did something that was wrong—deeply, profoundly, morally wrong.

In 1964, the World Medical Association developed a set of ethical principles for medical research involving human subjects and data from human subjects. These principles are known as the Declaration of Helsinki. They have been amended six times since passage, with the most recent version having been enacted in 2008. While the Declaration of Helsinki was promulgated for use by physicians, all researchers were urged to follow the guidelines.

The Belmont Report (1979) (regarding biomedical and behavioral studies) is a statement of basic ethical principles and guidelines for research involving human subjects. It contains three basic guiding principles of research: respect for persons, beneficence, and justice. This report became the foundation for the organization and responsibilities of Institutional Review Boards (IRBs). IRBs are charged with reviewing research proposals to ensure that the rights and welfare of subject participants and subject data are protected.

While the genesis of much of what we do regarding ethics in research is from medical fields, the principles apply to all aspects of educational research and practice. Researchers must adhere to the following tenets:

• obtain informed consent

• exhibit no deception

• provide full disclosure

• provide participants the right of withdrawal

• especially protect vulnerable populations

• assure privacy and confidentiality

• gather and report information accurately.

While IRBs are designed to protect human subjects during studies, the boards themselves have been under criticism from many researchers. Some criticisms relate to IRB members’ lack of understanding regarding some research paradigms and personality conflicts. Price (2012) discusses the purported mismatch between the way IRBs are structured and the realities of research. She reports that “Tales of researcher interaction with Institutional Review Boards (IRBs) are deemed ‘horror stories’ (Nelson, 2003) in which researchers are cast as ‘victims’ (Stark, 2006) of entities whose purpose for existence, it seems, is to drain the life out of research before it begins.”

Nelson relates a situation that occurred in her university in which the IRB insisted that a student needed approval before interviewing his or her mother. If the student’s professor filled out a 12-page IRB form, the interview protocol could be reviewed and approved if the mother was verified as mentally competent to give assent to the interview. This is just one of the instances where IRBs’ mission and reality role are in conflict. Other researchers who wish to remain anonymous have reported problems.

To take the pulse of faculty who conduct research, we put out a call on the Literacy Research Association’s (LRA) listserv to get a sense of researchers’ experiences with human subjects protections. The following anecdotes are representative samples of their responses:

We have had many problems with our IRB. Mostly they seem to be related to overly strict interpretation of the federal rules and regulations. For example, in the last year three of my students had their protocols rejected because they had requested an expedited review and they were told they had to go to full board review because their studies involved children age 18 or younger. These students were all engaged in action research in their own classrooms. At my university the category of “exemption” does not exist because our IRB defines normal classroom instruction not as what might occur in any classroom but as what occurs in a particular classroom. That means that if a teacher wants to use a new instructional strategy, that strategy is not “normal instruction” and therefore the action research cannot be classified as an exemption. One of my students was having her students orally read two texts and then orally retell and was told she could not taperecord even though audiotaping is a normal procedure for the RMI (Reading Miscue Inventory), which is what she was doing. These issues with our IRB have become so bad that we had discontinued our Master’s project that required classroom action research.

(personal communication, faculty member A)

I would like to say the folks at my university really understand but my problem with IRB is assent and consent. When dealing with children, I am not doing studies that would endanger them in any way. I’m usually asking questions about literacy. But since we are working with juveniles, we must get signed assent forms from parents. Getting middle and high schoolers to bring stuff home to their parents is near impossible. So we often get very low turnout because kids are kids.

(personal communication, faculty member B)

We have [sic] major bumps the past few years but the road seems to be smoothing out some. Our issues included: personality conflicts and paradigm conflicts. There were many issues where IRB reviewers tried to change the design of studies that were ethnographic or qualitative. Researchers were told no studying of one’s own teaching (at any level K-16 to postgraduate) was allowed. Issues related to digital data collection were archaic (e.g., permissions that could be collected using self selected pseudonyms from the web and contacting potential participants anonymously was instead required to ask for revelation of real names, real addresses etc.); anyone collecting video or audio data was asked to transcribe it and destroy the tapes within two weeks (regardless of their form of analysis). These were not isolated cases, but patterns that built up over time and were exacerbated by certain personalities.

This respondent went on to say how some faculty members tried to remedy the situation:

Things are better now, but it took time and energy. We addressed the issues in the following way:

— Collected specific examples to build a case (perhaps easier because many of them involved written feedback that was inappropriate such as recommending changes to design or quantifying a qualitative case study)

— Convened a group of interested faculty. This group met several times and ultimately met with members of the IRB. The dean was present at some meetings. One well-respected scholar helped convene this group and was probably most instrumental in getting change enacted.

(personal communication, faculty member C)

Personality conflicts also seem to hamper the review process. During numerous professional conversations several people stated that there were personality conflicts between a researcher and member or members of IRBs at the schools. One professor stated: “I knew I would not be approved because J and I have had theoretical conflicts in the past and this was his way of getting back at me” (personal communication, faculty member D). Another highlighted a larger difference: “There is a big chasm between quantitative researchers and qualitative researchers and the quantitative researchers feel that any other type of research is soft, useless and should not be approved. One IRB member went so far as to say they’re out to ‘get’ us” (personal communication, faculty member E).

The majority of IRB members comport themselves in a professional manner and try to assist researchers, while ensuring that no harm is done during the research study. One issue that seems problematic, though, is that there is not consistency across IRBs. It would be interesting to see how the same proposal is treated in various colleges. The autonomy within an IRB is protected in all cases, but that autonomy may lead to problems.

Ceci and Bruck (2009) discuss issues that evolve when the IRB process is problematic citing in particular that there are no checks and balances with IRBs. They claim that, although IRBs were designed to protect human subjects, there is no objective evidence that this goal is met, especially in the social sciences (p. 28). They propose limiting the independence of IRBs, evaluating the risks and benefits of IRBs and evaluating the competence of IRB members.

Parameters for research and researchers are continually evolving. What emanated from tragedy is moving to technology. As new paradigms emerge, as new technologies emerge, so too does the research community need to follow suit. This book details some of the issues that confront researchers in multiple contexts.

Suggested Engagement Activities

• What would you do if you were the professor discussed in the first vignette?

• ...

Table of contents

• Cover Page
• Half Title page
• Title Page
• Copyright Page
• Dedication
• Contents
• List of Contributors
• Foreword
• Preface
• Acknowledgments
• 1 Introduction The Advancement and Significance of Protecting Human Subjects
• Part I Research with Teachers and Students
• Part II Research with Pre-service and In-service Teachers in College/University and School Settings
• Part III Research in Virtual Worlds and Online Environments
• Index