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Discussion Guide and Transcript

Season Three - Episode Four

Research Ethics Reimagined Podcast Season Three: Episode Four "Disability, Inclusion, and Research Ethics with Nancy Olson, JD"

  • In this episode of PRIM&R's podcast, "Research Ethics Reimagined," we explore the inclusion of individuals with disabilities in research with Nancy Olson, JD, IRB. Olson serves as an analyst at the University of Nebraska Medical Center and is the recipient of PRIM&R's 2024 Service Award. Drawing on more than two decades of experience in human research protections and her own lived experience as a person who became deaf, Olson discusses how assumptions about disability shape — and often limit — who gets to participate in research. She examines the responsibilities of both researchers and IRBs in designing accessible studies and calls for a shift from compliance-focused thinking to genuine participant-centered preparation. Listen on Spotify | Listen on Apple| Listen on Amazon
Discussion Questions
  • 1.) Lived Experience as a Lens for IRB Review
  • Olson describes reviewing a protocol that excluded individuals with hearing or visual impairments and realizing the justification was cost, not science. How should IRBs evaluate exclusion criteria that reflect logistical concerns rather than genuine scientific necessity, and what questions should reviewers routinely ask?
  • She acknowledges that her personal experience made her "a better reviewer" while noting she does not represent everyone with different abilities. How can IRBs and HRPPs build broader disability expertise into their review processes beyond relying on individual reviewers with lived experience?
2.) Designing Accessible Research and Consent
  • Olson advises researchers to think about accessibility "ahead of time" rather than waiting until a participant arrives. Unprepared researchers, she said, often end up telling people they cannot participate. What changes to protocol design and staff training would help institutions move from reactive accommodation to proactive inclusion?
  • She emphasizes asking participants, "What is the best way to communicate with you?" rather than assuming what support they need, and suggests this principle applies to all participants, not only those with known disabilities. How might this shift in approach change the informed consent process more broadly?
3.) IRB and Institutional Responsibility
  • Olson recounts arranging for an IRB member with ALS to join her committee, only to discover that physically navigating the building required passing through multiple elevators and hallways made the participation of this IRB member unsustainable. What does this story reveal about the limits of ADA compliance as a standard, and how should institutions audit accessibility beyond the immediate meeting or research space?
  • She describes how revising her institution's consent policy removed an unnecessary secondary review step and replaced it with a straightforward standard: participants may use whatever communication tools they use in daily life. What role can IRBs play in simplifying rather than adding process burdens when addressing accessibility gaps?

Key Terms

HRPP (Human Research Protection Program): The institutional infrastructure — including the IRB and related offices and policies — responsible for overseeing the ethical conduct of human subjects research at a given organization
HRPP (Human Research Protection Program): The institutional infrastructure — including the IRB and related offices and policies — responsible for overseeing the ethical conduct of human subjects research at a given organization SACHRP (Secretary's Advisory Committee on Human Research Protections): A federal advisory body that provides recommendations to the U.S. Department of Health and Human Services on policies related to the protection of human research subjects
Additional Resources

Transcript

Please note, a transcript generator was used to help create written show transcript. The transcript of this podcast is approximate, condensed, and not meant for attribution. Listen to the full conversatio on PRIM&R’s Research Ethics Reimagined podcast.
Ivy Tillman: Nancy Olson has more than 20 years of experience working with institutional review boards, including serving as director of the Human Research Office at the University of Mississippi Medical Center and consulting in the field of human research protections. She is currently an IRB analyst at the University of Nebraska Medical Center. Nancy has been a speaker at regional and national meetings and has contributed to the third edition of the Institutional Review Board Management and Function Guidebook. She was a member of SACHRP’s Subpart A Subcommittee, a consultant to the Office for Human Research Protections, a past co-chair of PRIM&R’s Advancing Ethical Research Conference Poster Abstract Subcommittee, a PRIM&R board member, and president of ARENA (Applied Research Ethics National Association). I am also proud to share that Nancy was the recipient of PRIM&R’s 2024 Service Award. She demonstrates a profound commitment to ethical research practices, deep experience, and tremendous dedication to the professional development of others. Nancy, we are honored to have you with us today. Thank you for joining this conversation.
Nancy Olson: Thank you for inviting me. I am honored to be here.
Ivy Tillman: For those listening to our podcast, it is a privilege to lead today’s conversation with Nancy. I will begin by asking: while I have highlighted your extensive contributions and experience, can you share how you entered the field of human research protections and describe your career path?
Nancy Olson: By training, I am a lawyer, and I practiced as a trial lawyer for many years. At a certain point, I wanted to do something different, although I was not sure what. A colleague at the medical center reached out and described a role focused on ensuring that “all the i’s were dotted and the t’s were crossed.” I thought I could do that for a short time.I had no understanding of what an IRB was or what it did. I learned from the ground up—and I quickly developed a deep interest in the work.
Ivy Tillman: We are grateful that you did. It is always interesting to see how professionals arrive in the fields of ethics and oversight. Today’s discussion focuses on research involving individuals with disabilities. Can you share how your perspective on this area developed, including your recent conference session?
Nancy Olson: This is another area I did not initially consider. About three years ago, I lost my hearing. I am deaf. This experience significantly changed my perspective. I did not immediately consider how this would affect IRBs or research until I reviewed a study application that excluded individuals who were visually or hearing impaired. Before I could assess the justification, I reacted personally. I was surprised to see that individuals like me would be excluded.
After stepping back, I approached the review analytically and asked for the scientific justification. The response was not scientific; rather, it cited cost concerns, such as providing ASL interpreters or accessible materials. That moment prompted me to consider the broader implications of exclusion and accessibility in research. Ivy Tillman: Your lived experience is now shaping the field in meaningful ways. Thank you for sharing that.
Nancy Olson: I did not feel I had a choice. This became part of my daily experience, and it has changed how I review studies. I now consider additional factors and continue to learn. I do not represent all individuals with disabilities, but I strive to bring new insights into the review process and help others recognize that inclusion is both possible and necessary. Ivy Tillman: Can you describe how your lived experience has changed your approach to reviewing protocols?
Nancy Olson: I now encourage investigators to consider accessibility proactively. Researchers should plan in advance rather than reacting when a participant arrives. If accommodations are not available, participants may not return.
There are many tools available today. For example, when I first lost my hearing, providers often assumed I needed a sign language interpreter without asking. In reality, I use my phone and other technologies.
With appropriate planning, studies can be more inclusive and better prepared for a broader population.
Ivy Tillman: Do IRBs and institutions also have a role in supporting researchers in this area?
Nancy Olson: Yes. IRBs must learn to ask the right questions. When reviewing materials, they should consider how information will be provided to individuals with different needs. At my institution, we revised our consent policies to allow participants to use the tools they rely on in daily life, rather than requiring additional processes. This shift reflects a broader opportunity for institutions to learn what accommodations are available, often at little or no cost, and to prepare accordingly.
Ivy Tillman: Are you seeing increased awareness within institutions? Nancy Olson: Yes, although progress takes time. Awareness is the first step. For example, updates related to accessibility requirements have prompted institutions to explore tools and resources that improve accessibility. This is helping move the field from awareness to implementation. Ivy Tillman: You noted that individuals with the same diagnosis may require different supports. How should researchers approach protocol design in this context? Nancy Olson: This primarily affects the consent process and communication strategies. The most effective approach is to ask participants what they need and how they prefer to communicate. Researchers should avoid assumptions and instead provide flexible options, such as audio materials or alternative formats. This approach benefits all participants, not only those with identified disabilities. Ivy Tillman: You also shared an example involving an IRB member with ALS. What does that experience illustrate about accessibility? Nancy Olson: It highlights that accessibility extends beyond compliance. A building may meet ADA standards, but access can still be difficult in practice. In this case, navigating multiple elevators and hallways created a significant barrier.Similarly, accessibility in research requires attention to details such as internet connectivity, assistive technologies, and physical access. These considerations must be addressed proactively to ensure meaningful participation. Ivy Tillman: That underscores the importance of intentional planning. Nancy Olson: Exactly. Ivy Tillman: As we conclude, what is the key message you would like listeners to take away? Nancy Olson: We are all still learning. The most important step is to avoid assumptions and to ask participants what they need. While it may feel uncomfortable initially, this approach leads to better preparation, stronger studies, and more inclusive participation. Ivy Tillman: Thank you, Nancy, for sharing your insights and experience. Your perspective provides valuable guidance for advancing inclusion in research.Thank you to our listeners for joining us.


Research Ethics Reimagined guests are esteemed members of our community who generously share their insights. Their views are their own and do not necessarily reflect those of PRIM&R or its staff.