Science Corner: An introduction to research ethics

Grace J. Gunderson, MS
Sarah E. Frampton, PhD, BCBA-D, LBA(NE)
University of Nebraska Omaha, Omaha, NE, United States

ASAT's Science Corner When you think of famous scientists, you may remember names like Madam Curie, Albert Einstein, Galileo Galilei, Ada Lovelace, and Alexander Fleming. Their efforts to overcome adversity and advocate for scientific discovery have been documented many times, and rightly so. Their contributions have shaped our understanding of the world, revolutionized our technology, and saved countless lives. Penicillin, for example, was discovered by Alexander Fleming through accidental contamination of bacteria with fungus. Years later, penicillin was available for testing with animals, and eventually humans. The trial process continued with the effects of penicillin being evaluated with a variety of types of bacterial infections. Its life-saving potential was established decades ago (Fleming, 1943), laying the foundation for the development of modern antibiotics that continue to save millions of lives today.

Though we can and should thank Alexander Fleming for this scientific innovation, it is also important to remember that this work would not have been possible without individuals willing to serve as test subjects. Over time, terminology has evolved from the term “subjects” to recognize that people who volunteer their time, energy, and actual body parts for science are participants in the science. They are not simply subjected to the whims of the researcher, but rather an active contributor to its aims, recruitment and retention of participants, and ensuring that their consent is informed are essential steps in the research process.

Unfortunately, there are documented instances in which researchers have abused their positions of power and influence, used deception, and endorsed unquestionably harmful acts involving their participants. These efforts may have been rationalized by the intention of achieving a “greater good” for society. However, as will be explained in the following sections, there is no question that the harm done to the participants could never be justified. Though scientists, like all people, are subject to relevant laws, ethical practices are those that exist in the gray spaces between what is legal and what is considered morally right (Kennedy, 2005). Strong ethics are essential for researchers to ensure that individuals are fully informed of the risks involved in the research and are still willing to give their time, effort, and even bodily comfort before they choose to participate.

In this article, we will provide a brief historical overview of several events that set the stage for the development of contemporary research ethics regarding human participants. We will trace these precedents into safeguards that are now in place to protect research participants and provide oversight to researchers.

Historical Context

Among the most infamous examples of research misconduct is that of The Tuskegee Study of Untreated Syphilis in the Negro Male (Brawley, 1998). This study began during the Great Depression, when African American men were offered free healthcare through the U.S. government. However, the true purpose of the study and data being collected were withheld from participants during their annual exams. It was later revealed that the men were being tested for syphilis, with nearly 400 participants testing positive who then received no treatment or accurate information about their condition, even after penicillin became an approved and effective treatment. Beyond the serious health consequences of untreated syphilis, this study had lasting effects on trust in medical professionals and research institutions, particularly among African American communities (Shavers et al., 2000).

In another example, Krugman et al. (1967) attempted to develop an immunization for hepatitis by injecting children with intellectual and developmental disabilities with blood from infected individuals. Participants were recruited through their enrollment at the Willowbrook State School. Although caregivers were asked whether their child could participate in the study, they were not fully informed about the potential risks and harms associated with participation. This raised significant ethical concerns regarding informed consent, coercion, and the exploitation of a highly vulnerable population.

These studies represent just two examples of well-documented ethical lapses and demonstrate how vulnerable individuals were exposed to significant and irreversible harm in the name of scientific advancement. In both cases, participants were denied the opportunity to make choices with all the relevant information, and their well-being was secondary to the goals of the research.

Early Protections for Research Participants

Following these and other abuses in research, The Belmont Report was developed by the U.S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1979). It is a document that outlines ethical principles for human-subject research and provides guidelines for conducting research in accordance with those principles. The three core principles of the Belmont Report include respect for persons, beneficence, and justice.

- - Respect for persons emphasizes the importance of autonomy and informed consent, ensuring that individuals voluntarily choose whether to participate in research and fully understand the potential risks and benefits.
  - Beneficence requires researchers to minimize harm while maximizing potential benefits to participants and society.
  - Justice focuses on the fair and equitable selection and treatment of research participants so that certain groups are not disproportionately exposed to risk or excluded from potential benefits.

Together, these principles have had a major influence on modern research practices, including the development of professional ethical codes, informed consent procedures, and oversight by Institutional Review Boards (IRBs; to be discussed more extensively in an upcoming installment in this series).

Discipline Specific Ethical Codes for Research

The IRB governs the practice of research at its related institution, such as a university or hospital. Over the past decades, professional organizations that include members who may conduct research have developed discipline-specific research guidelines. As different disciplines have their own values and definitions of ethical practice, these guidelines serve as another level of accountability in the practice of research. Members of these organizations who violate the guidelines of their organization may face consequences such as a loss of a license or certification. Table 1, includes examples of ethical guidelines from disciplines that may conduct research with persons with autism spectrum disorder (ASD).

Table 1

Examples of Research-Related Ethical Standards Across Professional Organizations

Ethical Principle	BACB Ethics Code	APA Ethics Code	ASHA Code of Ethics
Informed Consent	Obtain informed consent and ensure participation is voluntary.	Obtain informed consent using language understandable to participants.	Obtain informed consent and respect participants’ rights.

Protection from Harm	Prioritize participant welfare and minimize risk.	Take reasonable steps to avoid harm and protect participant welfare.	Hold paramount the welfare of persons served and research participants.

Confidentiality and Privacy	Protect confidential information and participant records.	Safeguard confidential information obtained through research.	Protect the confidentiality and privacy of participants and their information.

Scientific Integrity	Conduct and report research honestly and accurately.	Do not fabricate, falsify, or misrepresent data.	Accurately represent research findings and scholarly activities.

Competence	Conduct research within areas of training and competence.	Conduct research within areas of professional competence.	Engage only in activities for which one is appropriately trained and competent.

Note. Examples are summarized from the ethical codes of the Behavior Analyst Certification Board (BACB, 2020), American Psychological Association (APA, 2017), and American Speech-Language-Hearing Association (ASHA, 2023).

As shown in Table 1, despite differences in disciplinary focus, the ethical codes emphasize several common principles related to research conduct. These include obtaining informed consent, protecting participants from harm, maintaining confidentiality, conducting research with honesty and integrity, and practicing within areas of competence. These discipline-specific ethical codes offer additional guidance that reflects the values and responsibilities of each profession. Together, these systems help ensure that research involving individuals with ASD is conducted in an ethical and responsible manner.

Contemporary Ethical Issues and New Frontiers

The ethical practice of research is continually evolving, and researchers’ motivations are receiving increasing scrutiny. If a researcher stands to benefit financially from the product they are studying, a conflict of interest exists that may compromise, or be perceived to compromise, the integrity of the research. If a researcher feels pressured to publish papers to reach tenure status, they may be incentivized to manipulate their data to demonstrate strong findings or use untrustworthy resources like generative artificial intelligence. As the issues evolve, protections to combat these practices must also change. This is critical to ensure that the information used to guide treatment decisions for persons with ASD and their families is grounded in the strongest possible scientific evidence.

In this upcoming series, we will explore these and other issues related to the ethical conduct of research. This series is not intended to deter individuals with ASD and their caregivers from participating in the process of research, but to ensure they are informed of their rights. We also hope to call attention to potential red flags that can be detected in published or ongoing studies so that consumers of research can be on the lookout for questionable practices. Furthermore, a strong foundation in ethics is vital for anyone involved in conducting research. Thus, it is our hope that this series can be a useful teaching tool for faculty members and researchers supervise trainees. These guidelines must be thoroughly understood and disseminated to ensure there is no uncertainty when faced with a moral dilemma, as no scientific discovery can be justified through inappropriate and unethical behavior.

References

American Psychological Association. (2017). Ethical principles of psychologists and code of conduct (2002, amended effective June 1, 2010, and January 1, 2017). https://www.apa.org/ethics/code

American Speech-Language-Hearing Association. (2023). Code of ethics. https://www.asha.org/policy/code-of-ethics/

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

Brawley, O. W. (1998). The study of untreated syphilis in the negro male. International Journal of Radiation Oncology, Biology, Physics, 40(1), 5-8. https://doi.org/10.1016/S0360-3016(97)00835-3

Fleming, A. (1943). Streptococcal meningitis treated with penicillin: Measurement of bacteriostatic power of blood and cerebrospinal fluid. The Lancet, 242(6267), 434-438. https://doi.org/10.1016/S0140-6736(00)87452-8

Kennedy, J. E. (2005). Grey matter: Ambiguities and complexities of ethics in research. Journal of Academic Ethics, 3(2), 143-158. https://doi.org/10.1007/s10805-006-9011-7

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. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html

Shavers, V. L., Lynch, C. F., & Burmeister, L. F. (2000). Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies. Journal of the National Medical Association, 92(12), 563.

Reference for this Article:

Gunderson, G., & Frampton, S. E. (2026). Science Corner: An introduction to research ethics. Science in Autism Treatment, 23(8).

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An Introduction to Research Ethics