Clinical Informed Consent and ABA: Understanding Legal and Ethical Foundations

Introduction

Informed consent is a fundamental principle in healthcare and behavior analysis (ABA). It ensures that individuals receiving services––or their legally authorized representatives––understand the nature, risks, and alternatives of an intervention before agreeing to it. Historically, medical decisions were largely physician-driven, but over the last century, there has been a shift toward respecting patient autonomy.

This blog post summarizes key legal and ethical considerations of informed consent, particularly how it applies to ABA practitioners. By understanding the historical foundations and legal precedents shaping informed consent, behavior analysts can ensure ethical and legally sound practices in their work.

Historical Foundations of Informed Consent

The concept of informed consent emerged as a legal and ethical necessity in response to historical medical abuses. Several key documents established fundamental principles:

• The Nuremberg Code (1947): Established voluntary consent as essential in medical research.
• The Belmont Report (1979): Introduced three core principles: respect for persons, beneficence, and justice.
• The Transition to Patient Autonomy: Over time, the focus shifted from physician-driven to patient-centered decision-making.

Informed consent is based on three key principles:

1. Disclosure – Patients must be informed of the risks, benefits, and alternatives of an intervention.
2. Comprehension – Individuals providing consent must understand the disclosed information.
3. Voluntariness – The decision must be made without coercion or undue influence.

The Legal Basis for Informed Consent in the U.S.

Informed consent has been shaped by over a century of legal cases. Although federal and state laws differ in their specifics, courts have consistently upheld the necessity of providing clear, comprehensive information to patients. Legal standards vary in how much information must be disclosed, with some following a community disclosure standard (what professionals in the same locality would disclose) and others following a reasonable person standard (what an average patient would need to make an informed decision).

Key Legal Cases That Shaped Informed Consent

Several court cases have defined the scope and expectations of informed consent in clinical practice. These cases provide essential guidance for ABA practitioners.

Schloendorf v. Society of New York Hospital (1914): The Legal Foundation

• Established that individuals have the right to accept or refuse treatment.
• Ruled that performing a procedure without consent constitutes battery.

DiFilippo v. Preston (1961): The Community Disclosure Standard

• Determined that providers must disclose information that is typically shared within their profession.
• Applied a standard based on local medical norms rather than patient perspective.

Canterbury v. Spence (1972): The Reasonable Person Standard

• Expanded informed consent obligations beyond professional norms to include what any reasonable person would need to know.
• Established a three-part requirement for disclosures:
  1. Risks and benefits of the proposed intervention.
  2. Risks and benefits of alternative options.
  3. Risks of not undergoing any intervention.

Gates v. Jenson (1979): Expanding Disclosure Requirements

• Required healthcare providers to inform patients of:
  1. Any known abnormalities identified in assessments.
  2. Future risks linked to non-treatment.
  3. Alternative diagnostic or treatment options.

Truman v. Thomas (1980): Addressing Unique Patient Concerns

• Established that failure to inform a patient about the risks of not undergoing an assessment could be considered negligence.
• Highlighted the importance of tailoring disclosures based on the individual’s unique risk factors.

Johnson v. Kokemoor (1996): Transparency About Provider Experience

• Ruled that patients must be informed about:
  1. Their provider’s level of experience with a procedure.
  2. The provider’s success rates compared to peers.
  3. Any increased risks due to lack of provider expertise.

Applying Informed Consent in ABA Practice

For behavior analysts, informed consent is not just a legal obligation—it is an ethical requirement outlined in the Ethics Code for Behavior Analysts (BACB, 2020). Best practices for ensuring informed consent include:

1. Providing Clear, Understandable Information

   • Use language that is accessible to the client or their legally authorized representative.
   • Avoid jargon that may confuse non-professionals.
   • Present information in written and verbal formats to enhance understanding.

2. Ensuring Comprehension

   • Ask clients or guardians to summarize their understanding.
   • Use teaching strategies (e.g., checklists, Q&A) to clarify complex concepts.
   • Encourage questions and discussion before obtaining consent.

3. Respecting Voluntary Decision-Making

• Ensure there is no coercion or undue influence in the decision-making process.
• Provide sufficient time for consideration.
• Offer alternative treatment options, including the risks of doing nothing.

4. Documenting the Consent Process
   • Keep detailed records of informed consent discussions.
   • Use formal consent forms that outline key information and signatures.
   • Update consent when treatment plans change significantly.

Challenges and Ethical Considerations

Despite the legal clarity on informed consent, ABA practitioners may face challenges in practice:

• Working with Nonverbal Individuals or Those with Limited Decision-Making Capacity:

  • Engage legally authorized decision-makers.
  • Use visuals or augmentative tools to enhance understanding where possible.

• Cultural and Linguistic Barriers:

  • Provide interpreters or translated materials when needed.
  • Respect cultural perspectives on decision-making, while maintaining ethical obligations.

• Conflicts of Interest:

• Ensure that recommendations are truly in the client’s best interest.

• Be transparent about financial or institutional influences on treatment decisions.

Conclusion

Understanding the legal and ethical foundations of informed consent is critical for behavior analysts. By following best practices and staying informed on legal precedents, clinicians can ensure they respect client autonomy, minimize legal risks, and uphold the ethical standards of the profession.

To learn more about the latest research on informed consent in ABA, read the full article:
Graber, A., & Maguire, A. (2024). Clinical Informed Consent and ABA. Behavior Analysis in Practice, 17(389–400).
DOI: 10.1007/s40617-023-00902-0