Navigating Ethics in Practice-based Research: Practical Frameworks for Aba Service Organizations

Abstract

ABA service providers have access to, and continuously generate, extensive high-quality clinical datasets to support practice-level decision making and evaluate treatment effectiveness. Despite this robust data infrastructure, there remains a clear disparity between the volume of available clinical data and the amount of practice-based outcomes of research disseminated through peer-reviewed outlets. This gap represents a missed opportunity to inform clinical practice and advance the scientific literature of the field. Among practitioners, a commonly reported barrier to data dissemination is uncertainty regarding ethical and regulatory requirements, particularly those related to Institutional Review Boards (IRBs), informed consent and assent, data confidentiality, and secure data storage in nonacademic service settings.

This paper presents pragmatic, practice-relevant frameworks to support the ethical dissemination of practice-based research within community-based ABA service organizations. Drawing on existing scholarship and professional ethics guidance, the paper clarifies distinctions among routine clinical practice, quality improvement activities, and research intended to contribute to generalizable knowledge. Applied decision-support tools are provided, including a structured model to guide IRB decision making and caregiver consent examples for both deidentified data use and study-specific research activities. A brief summary of findings from an anonymous practitioner survey is also included to illustrate common barriers, such as limited access to IRBs and low confidence in ethical decision making.

By translating established ethical principles into accessible, applied resources, this paper aims to reduce uncertainty, encourage practitioner participation in ethical dissemination, and strengthen the connection between clinical practice and scientific advancement in Applied Behavior Analysis.

Keywords: applied behavior analysis; research ethics; practice-based research; institutional review boards; informed consent; dissemination

Introduction

One defining characteristic of Applied Behavior Analysis (ABA) is its reliance on data-driven decision making. Behavior analysts systematically collect and analyze data to evaluate the clinical effectiveness of treatment interventions, guide clinical decision making, and document accountability to stakeholders and the families and individuals served. Despite the widespread collection of clinical data, only a small proportion of practice-derived findings from ABA service organizations are disseminated through peer-reviewed outlets. It has been reported by several authors that there exists a significant disconnect between what is frequently accomplished in practice settings and what appears in published writings (LeBlanc et al., 2016; Valentino, LeBlanc, & Hughes, 2018; LeBlanc et al., 2018). This disconnect limits the use of practice-generated data to inform the research literature and weakens the practice–research bridge. These issues collectively limit the dissemination of clinically meaningful findings that could inform and improve clinical practice.

A common stumbling block for the dissemination of research conducted by practitioners is the lack of clarity surrounding ethical and regulatory guidelines, most notably IRB issues, informed consent, and data confidentiality. There are many ABA organizations that function outside the university setting and do not have academic access to IRBs. These practitioners may be unclear if their clinical projects are considered human subjects research, if their dissemination activities require IRB approval, and how best to ethically disseminate data generated in the course of routine service provision. Without clear direction, practitioners may choose not to disseminate or risk ethical violations.

Relatedly, an ABA service organization may possess clinically-relevant data, but forgo the opportunity to further investigate dissemination options because there is uncertainty regarding the ethical review requirements. An illustrative practice-based example comes from a situation in which data collected in the course of clinical service provision was thought to have value for potential publication; however, in the absence of access to an Institutional Review Board (IRB), and uncertainties regarding how to obtain ethical review, the decision was made to withhold dissemination. This result aligns with a literature finding that ethical uncertainty, rather than perceived lack of scientific value, impedes practitioners’ capacity to add to the knowledge base (LeBlanc et al., 2018; Valentino et al., 2018; Normand & Donohue, 2023).

Finally, recent research literature begins to emphasize the significance of conducting research in the context of usual care along with the emphasis on strong ethical protections for clients and their families (LeBlanc et al., 2018; Valentino et al., 2018; Normand & Donohue, 2023). Nevertheless, a majority of the recommendations are still academic in nature and do not provide practitioners with specific instructions for implementing a systematic approach to ethical decision making in pragmatic environments. Thus, the aim of the current study is to fill this deficit by rendering the already available ethical models into applicable materials for organizations that provide ABA services.

Background and Rationale

Ethics and Practice-Based Research in ABA

Ethical responsibility is a core principle of ABA practice and is articulated in the Ethics Code for Behavior Analysts that delineates the ethical responsibilities of behavior analysts regarding their obligations to their clients’ well-being; informed consent; and the use of data and unauthorized disclosure (Behavior Analyst Certification Board [BACB], 2020). The coverage of the ethical code is not limited in the scope of conventional clinical service but also in research related aspects such as data collection, analysis, and information dissemination. At the same time, researchers also underlined the importance of practice-relevant studies to the social validity, efficiency, and accountability of ABA practices to the contexts faced on a day-to-day basis (Slocum et al., 2014; LeBlanc et al., 2016; Valentino et al., 2018).

While there is an agreement on the value of practice–based research to broaden the current knowledge, several barriers still inhibit practitioners from academic contributions, such as limited access to IRBs, ambiguity in terms of professional ethical obligations, lack of institutional affiliation, time constraints, and insufficient mentorship or training (LeBlanc, Taylor, & Marchese, 2016; Valentino, LeBlanc, & Hughes, 2018; Normand & Donohue, 2023). It is reported that “practitioners frequently have difficulty differentiating among their routine clinical practices, quality improvement projects, and research designed to contribute to generalizable knowledge” (LeBlanc, Nosik, & Petursdottir, 2018); with such ambiguity, either too much restraint (e.g., opting not to report clinically significant findings) or unintended ethical infringements in the research findings dissemination may result (Normand & Donohue, 2023).

Human Subjects Research Versus Clinical Practice

One of the main sources of confusion for many practitioners is figuring out if a project is considered human subjects research. Human subjects research is typically considered to be a systematic investigation that is intended to develop or contribute to generalizable knowledge, as defined by federal regulations (U.S. Department of Health and Human Services [HHS], 2018). However, it is argued that certain uses may fall outside the purview of this definition, such as standard clinical practice, quality enhancement efforts, and assessments of internal programs especially when no identification is present and data is restricted from public distribution.

Nonetheless, the distinction of these categories in practice is often blurred. An example of this is a single-case design that was originally implemented to enhance the outcomes of a client can subsequently be viewed as a viable target for publication. In the absence of prior ethical planning, the practitioner may not feel they are in the position to know if dissemination is appropriate. This paper addresses the challenge by providing structured decision-making supports for practitioners to assess ethical obligations prospectively rather than retrospectively.

Practitioner Survey: Ethical Confidence and Barriers

In order to anchor the conceptual conversation in the present-day clinical context, a short anonymous survey was circulated among practicing behavior analysts through a professional social media network. No identifying information was collected, and results were reported only in aggregate. The survey aimed to assess access to ethical review mechanisms, perceived challenges to data sharing, and confidence in identifying the need for IRB approval.

Survey Results

 All respondents reported that their organizations did not have access to an internal or external IRB. All participants (100%) answered that the major obstacle for them to share the results of their research is due to the absence of mentorship or training. Respondents displayed low confidence in their ability to assess if a clinical project would have to be sent for IRB based review: 50% voted “not very confident,” and 45% voted “not at all confident.”

In response to the question about which available resources would help boost their confidence the most when carrying out research, 80% of the respondents answered training/mentorship and 20% answered decision-making flowcharts. This indicates that ethical ambiguity and an absence of field-based direction are still serious challenges for practitioners, maintaining the demand for applied and accessible materials.

The survey gathered non-sensitive, anonymous information and was non-intervention and non-identifiable, so it was considered exempt and did not need an IRB review.

Practical Frameworks for Ethical Oversight

Determining When IRB Review Is Required

The initial component of the ethical planning of research is to ascertain the necessity and desirability of an IRB review or its lack of need. Projects that seek to develop or contribute to generalizable knowledge through a systematic inquiry—especially those using experimental manipulation, comparison groups, or involve non-standard care procedures—should undergo IRB review prior to implementation or sharing of results (U.S. Department of Health and Human Services [HHS], 2018; Kazdin, 2011; Normand & Donohue, 2023).

On the other hand, quality improvement projects, internal program evaluations, and retrospective studies of fully deidentified data may not require IRB review when there is no intent to contribute to generalizable knowledge. When in doubt, the parties should seek consultation with an ethics expert or independent review body.

To reduce the level of ambiguity created, a decision-making flowchart is being presented in this paper (See Appendix B) to assist the practitioners in making the choice by maneuvering through important ethical decisions including the goal of the project, level of risk, and whether or not it could be associated with identifiable data. These tools can facilitate coherent and defensible ethical decision-making throughout the organization.

Alternatives When Formal IRB Access Is Unavailable

Several ethical alternatives have been discussed in literature, applicable to organizations that lack the university-based IRB. The study team may also use an independent or commercial IRB; this business will formally provide ethical review for a determined price (Valentino & Onofrio, 2022). Another method is to set up an internal ethics review board. This board will include and comprise of senior behavior analysts, administrators, and external consultants. Internal committees can signal systematic ethical oversight and organizations' engagement in consumers' protection if properly organized (LeBlanc, Nosik, & Petursdottir, 2018) though they are not a substitution for an IRB's legal power.

Moreover, practitioners could consult with their professional associations, research collaborators, or experienced researchers on project and dissemination plan proposals. These multi-tiered protections align with best practices for bolstering consumer safety and ethical responsibility among human service organizations (LeBlanc et al., 2018; Valentino & Onofrio, 2022).

Informed Consent and Caregiver Communication

In situations where clinical data could be utilized outside of the immediate service delivery context, transparent disclosure to caregivers and participants is a fundamental ethical requirement. In the field of Applied Behavior Analysis, ethical principles dictate that clients and their families are provided with appropriate information on the possible collection, usage, confidentiality, and sharing of data, and that any involvement in a research activity must be on a voluntary basis (Behavior Analyst Certification Board [BACB], 2020). It is also important to emphasize that consent processes should be clear and accessible to caregivers, who should understand and be able to provide or refuse consent for the purposes of data use in a non-coercive or non-undue influence manner (Fisher & Happel, 2013).

Also, in applied service settings the procedure of consent may cover several possible usages of clinical data - for quality improvement purposes, training of personnel, professional presentations and even publication. Ethical guidance also encourages the proactive communication with caregivers regarding such potentialities and obtaining permission—as applicable—when data are fully deidentified and utilized for secondary purposes, especially when the data sharing is expected to occur outside of a given organization (LeBlanc, Nosik, & Petursdottir, 2018; Normand & Donohue, 2023). Detailed information on data deidentification procedures, confidentiality protections, and limits of data use may build caregiver knowledge and transparency, thereby alleviating uncertainty.

To implement the proposed values and principles, the current paper provides model consent forms for the use by ABA service agencies (see Appendix C). The templates further differentiate between (a) generic consent for the use of deidentified clinical data and (b) study-specific consent for use in the context of activities that go beyond normal clinical care. This distinction adheres to ethical guidance prioritizing proportionality, where the degree of consent and supervision is proportional to the level of risk and deviation from customary practice (Fisher & Happel, 2013; Normand & Donohue, 2023).

Significantly, it must be recognized that consent is a continuous process and not something that occurs as a one-time administrative event. The ethical codes and applied ethics literature highlight that caregivers need to be made aware that they have the right to cancel their consent at any point without consequence or effect on the provision of services, and that the consent should be re-evaluated if there are changes to the goal and objectives, procedures, or dissemination of the results of the project (BACB, 2020; LeBlanc et al., 2018). This approach to framing consent secures participants’ rights and reaffirms the moral obligation to respect client autonomy and engage in collaborative decision making.

Effective communication and perception along with transparent consent practices can help to develop trust among families and service delivery organizations in order to encourage the ethical sharing of practice-based research. Trust is especially crucial in community-based ABA services due to the long-term nature of treatment relationships that underpin service delivery, and the potentially dire impacts of ethical violations on client outcomes and organizational credibility (Normand & Donohue, 2023).

Safeguarding Data and Privacy

Whether an IRB is involved or not, there is an ethical responsibility in the field of Applied Behavior Analysis (ABA) to ensure confidentiality of clients at all times (Behavior Analyst Certification Board [BACB], 2020). Behavior analysts should have ethical standards to protect clients' information and to use, store, and share data in a manner that reduces the likelihood of identification or harm. These responsibilities extend to the dissemination of clinical services, quality improvement efforts, and research (BACB, 2020; Normand & Donohue, 2023).

In practice-based research, the confidentiality can be ensured as long as data is deidentified prior to dissemination, all direct identifiers (eg, names, date of birth, address, Insurance Information and SSN) are removed, and even indirect identifiers are not present in descriptive narratives that may lead to reidentification (LeBlanc, Nosik, & Petursdottir, 2018). In applied settings, aggregated data and even single-case graphs can lead to reidentification when contextual information is too specific, making data minimization and careful reporting essential (Normand & Donohue, 2023).

Further, ethical recommendations reiterated both the need for data to utilize secure and compliant storage platforms, and the need for policies around data access, retention and destruction (Valentino & Onofrio, 2022). This demand for protections represents a guiding theme in general recommendations for the protection of consumers from human service providers, and for the accountability of organizations when engaging in or even taking part in research or dissemination activities (LeBlanc et al., 2018). Collectively, these recommendations underscore the protections available for the rights of individuals in service provision based research in ABA service organizations, and the support available for the credibility, genuineness, and sustainability of efforts to participate in these studies.

Implications for ABA Service Organizations

Use of the frameworks proposed in this paper by ABA service organizations may lower ethical ambiguity, facilitate practitioners’ involvement in the research propagation, and fortify the bridge between clinical work and scientific advancement (LeBlanc, Taylor, & Marchese, 2016; Valentino, LeBlanc, & Hughes, 2018). The establishment of formal or informal ethical review processes within the organization, demonstrates a commitment by the firm to ethical values of transparency, accountability and consumer protection, in line with best practices for ethical oversight programs in human service agencies (LeBlanc, Nosik, & Petursdottir, 2018; Normand & Donohue, 2023).

 Providing practitioners with access to practical tools, decision-support mechanisms, and mentorship may enhance confidence and competence in the ethical conduct of research, particularly in applied contexts where formal research infrastructure is limited (Valentino, 2022; Valentino & Onofrio, 2022). Ideally, over time, these measures will help foster a cultural transformation in which practice-based research is perceived as a regularly accepted and endorsed aspect of ethical service provision -rather than a potentially risky or under-valued enterprise- ultimately encouraging continuous involvement in dissemination activities (LeBlanc et al., 2016; Normand & Donohue, 2023).

Discussion

 Practitioners frequently encounter situations in which clinically valuable data may also be suitable for dissemination. When ethical standards are not expressed in a clear, operationalized manner, many practitioners choose to refrain from the publication or presentation of such data, and potentially, the opportunity to share knowledge and further enhance the interdependent dynamic between research and practice is lost (LeBlanc, Taylor, & Marchese, 2016). This trend appears to reflect uncertainty regarding ethical and regulatory expectations about what the ethical and regulatory demands are for dissemination, especially in the case of service settings with no access to the IRBs (Normand & Donohue, 2023).

The present paper contributes to the body of work by shifting the focus from a solely conceptual exploration of research ethics to offering applied tutorial materials that help practitioners implement ethical guidelines in their daily contexts. The proposed paper meets this need for practical resources which uphold suitable consumer safeguards by providing decision making supports, consent models and internal ethics oversight templates for practitioner-led dissemination (LeBlanc, Nosik, & Petursdottir, 2018).

Additional survey results validate this requirement of urgency. Most participants stated that they have less access to IRB resources, low self-perceived confidence in identifying types of activities that require ethical review, and keen interest towards training and mentorship support. It seems these gaps would best be addressed through the provision of not only conceptual guidance, but also accessible resources and professional development that are in keeping with the realities of community-based ABA service organizations.

Conclusion

Overall, this paper advances the field of research ethics in Applied Behavior Analysis by articulating existing ethical pillars into applicable, practice-relevant concepts for service delivery. The paper provides specific mechanisms for these recommendations, including identifying when IRB review is necessary, describing ethical options when formal review is not accessible, linking to consent materials, and calling attention to data safety. Moreover, it responds to a gap between the clinical implementation and the academic dissemination, which is widely discussed in the literature, and supports the advancement of ABA as both a rigorous scientific discipline and a socially accountable professional practice.

Ethics Statement

The practitioner survey utilized in this report qualified for exempt status and did not require IRB review since only anonymous and non-sensitive information is collected. There is no identifiable data, and it does not involve intervention.

Data Availability Statement

The data supporting the findings of this study consist of aggregated, anonymous survey results generated through a third-party platform. No identifying information was accessible to the author, and only summary-level results were available. Individual-level data cannot be accessed or shared. Accordingly, the data is not publicly available.

References

1. Behavior Analyst Certification Board. (2020). Ethics code for behavior analysts. https://www.bacb.com/ethics-code/

2. Fisher, W. W., & Happel, B. L. (2013). Parent and guardian consent for applied behavior analysis research: Ethical issues and practical solutions. Behavior Analysis in Practice, 6(1), 3–11. https://doi.org/10.1007/BF03391789

3. Kazdin, A. E. (2011). Single-case research designs: Methods for clinical and applied settings (2nd ed.). Oxford University Press.

4. LeBlanc, L. A., Nosik, M. R., & Petursdottir, A. I. (2018). Establishing consumer protections for research in human service agencies. Behavior Analysis in Practice, 11(4), 445–455. https://doi.org/10.1007/s40617-018-0206-3

5. LeBlanc, L. A., Taylor, B. A., & Marchese, N. V. (2016). The relevance of practice-based research in behavior analysis. Behavior Analysis in Practice, 9(4), 358–368. https://doi.org/10.1007/s40617-016-0123-1

6. Normand, M. P., & Donohue, H. E. (2023). Research ethics for behavior analysts in practice. Behavior Analysis in Practice, 16, 13–22. https://doi.org/10.1007/s40617-022-00698-5

7. Slocum, T. A., Detrich, R., Wilczynski, S. M., Spencer, T. D., Lewis, T., & Wolfe, K. (2014). The evidence-based practice of applied behavior analysis. Behavior Analysis in Practice, 7(2), 133–143. https://doi.org/10.1007/s40617-014-0015-7

8. U.S. Department of Health and Human Services. (2018). Federal policy for the protection of human subjects (“Common Rule”) (45 C.F.R. § 46). https://www.ecfr.gov/current/title-45/subtitle-A/subchapter-A/part-46

9. Valentino, A. L. (2022). Applied behavior analysis research made easy: A handbook for practitioners conducting research post-certification. New Harbinger Publications.

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Valentino, A. L., & Onofrio, O. M. (2022). Obtaining resources to support research in applied clinical settings. In D. J. Cox, M. T. Brodhead, & S. P. Quigley (Eds.), Research ethics in behavior analysis: From bench to bedside (pp. 265–283). Academic Press. https://doi.org/10.1016/B978-0-12-823777-5.00017-2

Appendices

Appendix A. Practitioner Survey on Research Ethics in Clinical ABA Practice

An anonymous survey was delivered to the members of a professional networking website for practicing behavior analysts. No identifying information was requested, and all results were reported in aggregate for descriptive analysis. This survey did not involve the collection of sensitive, identifiable information, or intervention.

Survey Items

1.        Does your organization currently have access to an Institutional Review Board (IRB) or ethics review process?

–         ☐ Yes, internal IRB

–         ☐ Yes, external/commercial IRB

–         ☐ No

–         ☐ Unsure

2.        What is the biggest barrier preventing you or your organization from publishing or disseminating clinical research?

–         ☐ Time constraints

–         ☐ Lack of mentorship or training

–         ☐ Ethical or regulatory concerns

–         ☐ Lack of IRB access

3.        How confident are you in determining whether a clinical project requires IRB approval?

–         ☐ Very confident

–         ☐ Somewhat confident

–         ☐ Not very confident

–         ☐ Not at all confident

4.        Which of the following would most increase your confidence in conducting ethically sound clinical research?

–         ☐ Decision-making flowcharts

–         ☐ Consent or assent templates

–         ☐ Guidance for minimal-risk projects

–         ☐ Training or mentorship opportunities

Appendix B. Decision-Making Flowchart for IRB Determination

Figure B1. Decision-Making Flowchart: Do I Need IRB Approval?

This figure depicts a stepwise decision-making process guiding practitioners through key considerations, including project intent (clinical care vs. generalizable knowledge), level of risk, data identifiability, and dissemination plans. The flowchart is referenced in the manuscript as a practical tool to reduce uncertainty regarding IRB requirements.