BA285 Unit 8 Research Ethics in Practice Paper Example

The Data We Collected Were Going to Be Published: A BA285 Unit 8 Research Ethics in Practice Paper

[Student Name]

Purdue University Global

BA285: Ethics in Behavior Analysis

Unit 8 Research Ethics in Practice Paper

[Instructor Name]

[Date]

The writer, her agency and the families are composite; the code, report and article cited are real.

The Plan

The agency where I work as a registered behavior technician launched a video coaching program last year, in which a supervisor or technician coaches parents by video to deliver parts of their child's program at home. Twelve families took part in the first six months. I coached three of them and collected data on parents' accuracy in implementing procedures and on children's target behaviors.

In August, the clinical director announced that the results looked strong and that she planned to present them at a state behavior analysis conference and possibly submit a short article to a practitioner journal. She asked technicians to send her cleaned data spreadsheets. When I asked whether the families knew, she paused and said the data were collected as part of their services, so it should be fine.

When Practice Becomes Research

The question is whether using clinical data for a presentation or publication turns ordinary practice into research. The Belmont Report, which shaped American research ethics, distinguished practice, activities designed to benefit an individual client, from research, activities designed to test a hypothesis and contribute to generalizable knowledge (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). The same activity can be both: data collected to guide a child's treatment become research data when they are analyzed and shared to inform others.

The Behavior Analyst Certification Board's ethics code includes a section on research. It requires behavior analysts to conduct research only after approval by a formal research review committee, to obtain informed consent for research participation, to distinguish clearly between services and research, and to use data from services for research purposes only with appropriate consent or approval (Behavior Analyst Certification Board, 2020).

The families agreed to services, not to having their children's data presented to a room full of strangers.

Consumer Protections

LeBlanc et al. (2018) addressed this exact situation in human service agencies. They noted that many behavior-analytic organizations have valuable data and an interest in contributing to the field, but often lack the research review structures found in universities. They recommended that agencies establish consumer protections, including a review committee with members independent of the project, clear policies on when data use counts as research, informed consent processes that let families choose whether their data are used, and protections ensuring that declining has no effect on services.

Our agency had none of these structures. The director's intent was good, sharing a successful program could help families elsewhere, but the plan bypassed every protection LeBlanc and colleagues describe.

The Director's Perspective

It is worth taking the director's view seriously. Small agencies rarely publish, and the field's evidence base is built mostly in universities with very different families and resources. If rural agencies never share their results, practitioners elsewhere learn little about what works for families like ours. The director also had a point that the data were already collected and that sharing them would not change anyone's services. From her perspective, asking for consent after the fact might seem like paperwork that would only delay something useful.

The answer is not that the director's goal was wrong, but that the route mattered. LeBlanc and colleagues argue that consumer protections make agency research possible over the long term, because families who trust that their information is handled carefully are more willing to take part. Skipping consent might produce one presentation; building protections could produce a body of work.

Risks

The risks were not abstract. Twelve families in a rural region are a small group. Even with names removed, a presentation describing a child's age, diagnosis, county and behaviors could allow someone in the audience, perhaps a teacher or another provider, to identify a family. Several families had told us that they had not shared their child's diagnosis with relatives. Using their data without consent would also change the relationship between the agency and families, who might wonder what else was being shared.

There was also a subtler risk of coercion. If families were asked for consent by the same staff who provide their services, some might agree because they feared that refusing would affect their child's care.

What I Did

As a technician, I had no authority over the presentation, but I had a responsibility not to participate in something I believed violated the code. I wrote to my supervisor, explaining my concern, citing the code's research standards and the article by LeBlanc and colleagues, and asking whether the presentation could be delayed until families had a chance to consent. I offered to help draft a consent letter.

My supervisor took the concern to the director, who agreed to delay. The agency formed a small review committee, including an outside behavior analyst from a university and a parent from a different program, which approved a consent process. A staff member who did not provide services to the families sent each a plain-language letter explaining the presentation, what data would be used, how identities would be protected and that declining would not affect services. Ten of twelve families agreed. The presentation used only their data, with county and other identifying details removed, and reported results as group summaries.

What Agencies Should Build

The episode showed that our agency needed structures before the next project, not after. With my supervisor, I drafted a short proposal for the director: a standing review committee that meets as needed, a one-page policy explaining when service data count as research, a consent form offered at intake that lets families agree in advance to de-identified use of their data, with a clear option to say no, and a rule that consent requests come from staff outside the family's care. The director adopted most of it, and the committee has since reviewed a second project.

Conclusion

The agency's plan to present its video coaching results came from a desire to help, but it turned service data into research data without the protections that research requires. The Belmont Report's distinction between practice and research, the code's research standards and LeBlanc and colleagues' model of consumer protections show what was missing. A delay, an independent review, consent sought by someone outside the families' care and an opt-out turned a questionable plan into an ethical contribution.

References

Behavior Analyst Certification Board. (2020). Ethics code for behavior analysts. Author.

LeBlanc, L. A., Nosik, M. R., & Petursdottir, A. (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

National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. U.S. Department of Health, Education, and Welfare.