About

Erin Rothwell is an Associate Professor-Research in the Division of Medical Ethics and Humanities and College of Nursing at the University of Utah. She is a social scientist with a clinical background in recreation therapy. She is a faculty member within the Graduate Program for Genetic Counseling and completed a fellowship in Bioethics from the Medical College of Wisconsin. Dr. Rothwell's program of research focuses on the ethical, social, and legal implications of genetic and technological advancements on individuals and families specifically within newborn screening, prenatal testing and biobanking. She has extensive experience on qualitative approaches to further understand and advance this research agenda.

Research topics

• Medicine
• Nursing
• Computer Science
• Virology
• Internal medicine
• Political Science
• Medical education
• Pathology
• Business
• Intensive care medicine
• Process management
• Knowledge management
• Pediatrics
• Family medicine

Selected publications

• The Meaning of Screening: Exploring user experience of an aneuploidy screening educational game

  Journal of Genetic Counseling · 2026-02-01

  articleOpen accessSenior author

  The Meaning of Screening is an interactive, gamified educational web-based app designed to support aneuploidy screening decision-making and was created through interviews and iterative development with patients, providers, and experts. The goal of this qualitative study is to summarize users' game experience, including how the app impacted their decision-making process. For this study, participants recruited into the randomized controlled trial to assess the effectiveness of the app on informational needs, preferences, and shared decision-making of patients' aneuploidy screening decision were interviewed about their experience with the game. Participants were selected through a two-step process: opting into interviews followed by sampling to achieve population representativeness. Inductive content analysis was conducted on the transcripts, with codes created from the transcribed interview content, where the interviewee's words were used as descriptors. Seventeen participants were interviewed about their experience with and opinions about the app titled "Meaning of Screening." Over half of the participants were aware of aneuploidy screening prior to interacting with the game (n = 13). Three major categories were identified through inductive content analysis: Impact, User Experience, and Integration into Clinical settings. Participants shared their experience with the game, with many expressing it helped to increase knowledge and understanding, assist values clarification, support decision-making factors, and promote shared decision-making with their partner and healthcare provider. Healthcare professionals play a crucial role in patients' aneuploidy screening decision-making by offering accurate, thorough, and unbiased information about available options. However, during prenatal visits, the provider has competing topics to discuss. When limited time doesn't allow for proficient education in the clinic, it is important that patients obtain accurate information through other means. This allows the patient to integrate this knowledge with their values when considering the potential implications of undergoing aneuploidy screening. Results from this study support the Meaning of Screening app can provide additional education to support decision-making about aneuploidy screening.

  PublisherOA PDFDOI

• How women respond to uncertainty in the context of genetic screening: A qualitative analysis framed by the uncertainty tolerance model

  Journal of Genetic Counseling · 2025-09-08 · 1 citations

  articleOpen access

  With advances in next-generation sequencing technologies, individuals can seek genetic risk information for multiple conditions. However, feasibility and communication challenges could arise if offering multiple genetic tests simultaneously, such as cancer predisposition testing and carrier screening for pregnancy planning. Genetic screening introduces uncertainty from probabilistic results, ambiguous gene-disease associations, and complex variant interpretation, intertwining with psychosocial concerns impacting decision-making and emotional well-being. This study utilized coding reliability thematic analysis with both a deductive and inductive approach using the uncertainty tolerance model as a framework to explore how reproductive-age women perceive and respond to uncertainty in the context of genetic screening. Through in-depth interviews with 20 women recruited from obstetrics/gynecology clinics, the study revealed cognitive, emotional, and behavioral responses to uncertainty. Participants lacked familiarity with genetic screening but expressed interest in learning more. Positive cognitive responses were associated with desires for proactive health management, while negative responses often stemmed from concerns about test accuracy and potential side effects. Emotional responses ranged from hope and excitement to fear and anxiety, shaping information-seeking behaviors. The study underscores the importance of tailored patient education and communication strategies in genetic counseling to address uncertainty, support informed choice, and alleviate distress. The findings offer insights for improving genetic counseling practices and enhancing patient-centered care.

  PublisherOA PDFDOI

• Recruitment Techniques Used for Clinical Trials and the Potential Impact of Nudges: Qualitative Interview Study with Recruiters

  Journal of Empirical Research on Human Research Ethics · 2025-05-20 · 1 citations

  articleOpen access

  While clinical trials are essential to improving public health, little research has examined the range of recruitment techniques used or whether they involve behavioral nudges. Behavioral nudges have been defined as "any aspect of the choice architecture [the manner in which options are presented] that alters people's behavior in a predictable way without forbidding any options or significantly changing their economic incentives"; these may influence individuals' autonomy in deciding to participate. To investigate, the study team conducted 39 semi-structured interviews with clinical trial recruiters at two academic medical centers, asking about their recruitment techniques and any perceived ethical concerns. Through inductive qualitative analysis, five main themes emerged: impact of relationships (among recruiters, healthcare teams, and participants), financial compensation, community benefit, study risks and benefits, and personalized study information. The study then assessed whether these techniques were seen as nudges and explored their ethical implications for informed decision-making.

  PublisherOA PDFDOI

• Informed consent: Old and new challenges in the context of the COVID-19 pandemic

  UNC Libraries · 2025-05-14

  articleOpen access

  In this paper, we address how the COVID-19 pandemic has impacted informed consent for clinical research through examining experiences within Clinical and Translation Science Award (CTSA) institutions. We begin with a brief overview of informed consent and the challenges that existed prior to COVID-19. Then, we discuss how informed consent processes were modified or changed to address the pandemic, consider what lessons were learned, and present research and policy steps to prepare for future research and public health crises. The experiences and challenges for CTSA institutions offer an important perspective for examining what we have learned about informed consent and determining the next steps for improving the consent process.

  PublisherDOI

• Usage and perceived effectiveness of recruitment techniques among clinical trials recruiters

  Journal of Clinical and Translational Science · 2025-01-01

  articleOpen access

  Introduction: Effective recruitment techniques are essential for researchers to recruit and retain potential participants in studies, particularly as recruitment numbers into clinical trials have decreased. While recruitment techniques have been investigated, there is a gap in understanding the perspectives of clinical trials recruiters. This paper examines recruiters' usage and perceived effectiveness of various recruitment techniques, as well as their perspectives on related ethical issues. Methods: We conducted a cross-sectional survey of 381 clinical trials recruiters. Closed-ended items examined whether recruiters had used 31 pre-defined recruitment techniques and their perceptions of the effectiveness of each technique. For techniques perceived to be highly effective or ineffective, open-ended items examined recruiter reasoning. The multiple methods analysis integrated the closed-ended and open-ended data. Results: = 4.23, SD = 0.91). Recruiters often rated techniques as more highly effective when they had prior experience using them. They also identified concerns about professionalism, ethics, and transparency in standard practice recruitment techniques. Conclusions: Our findings indicate that there is significant variation in the usage of clinical trial recruitment techniques and how different recruiters view the effectiveness of each technique. The unique perspectives of those who recruit into clinical trials can help inform future decisions regarding which recruitment techniques to utilize, along with how and when to use particular recruitment techniques in an ethical manner.

  PublisherOA PDFDOI

• Creation and adoption of a stillbirth evaluation decision aid

  Patient Education and Counseling · 2025-07-15

  articleSenior author
  PublisherDOI

• Ethical implications of recruitment techniques used for clinical trials

  Patient Education and Counseling · 2025-07-15

  article
  PublisherDOI

• Development and Validation of a Stakeholder-Driven, Self-Contained Electronic Informed Consent Platform for Trio-Based Genomic Research Studies

  AJOB Empirical Bioethics · 2025-06-23 · 1 citations

  article

  BACKGROUND: with traditional face-to-face approaches. In parallel, interest in electronic consents for clinical and research genomics has steadily increased, yet limited data are available for trio-based genomic discovery studies. We describe the design, development, implementation, and validation of an electronic iConsent application for trio-based genomic research deployed to support genomic studies of cerebral palsy. METHODS: iConsent development incorporated stakeholder perspectives including researchers, patient advocates, institutional review board members, and genomic data-sharing considerations. The iConsent platform integrated principles derived from prior electronic consenting research and elements of multimedia learning theory. Participant understanding was assessed in an interactive teachback format. The iConsent application achieved nine of ten proposed desiderata for effective patient-focused electronic consenting for genomic research. RESULTS: . CONCLUSIONS: while increasing study reach.

  PublisherDOI

• Informal prenatal genetic screening education: What can you learn from Google and YouTube?

  Genetics in Medicine Open · 2024-01-01 · 2 citations

  articleOpen accessSenior author

  Introduction: The goal of this paper is to explore what online education and decision support tools are freely available to patients about prenatal screening. Materials and Methods: We 1) conducted an environmental scan using Google Trends to identify and evaluate prenatal screening search terms, 2) created a list of websites and YouTube videos that would be easily accessed by a searcher and 3) characterized the information within those websites and videos, including an examination of their qualities as a decision support tool and a readability analysis. Results: Fifty websites, containing 62 unique educational resources, and 39 YouTube videos were analyzed. The websites were primarily educational, though the education was provided by a range of sources including non-profit and for-profit organizations, universities, and governments (i.e., public health departments). Readability scores (PEMAT-P) for the sites ranged from 50% to 92%, with a median score of 74%. Two of the websites we evaluated met all of the limited decision support standards we applied; four of the websites included patient stories or experiences and eight included some element of values clarification. Videos were more likely to include values clarification. Discussion: The information available to patients online is variable. While most is balanced and informative, much is difficult to read and missing key decision-making factors. Healthcare providers should work with patients to ensure they have basic comprehension of the prenatal genetic screening materials, possible result outcomes, and expected steps following a positive screening result.

  PublisherOA PDFDOI

• Addressing Barriers to Autopsy and Genetic Testing in Stillbirth Workup

  O&G Open · 2024-08-01 · 5 citations

  articleOpen accessSenior author

  The cause of death in many stillbirths remains unexplained, in part because of systematic barriers to complete workup. We review the importance of placental pathology, fetal autopsy, and genetic testing in stillbirth workup. Placental pathology is useful in 65% of stillbirths, and fetal autopsy is useful in 42%. Currently, only 21% of stillbirths in the United States undergo autopsy. Barriers to complete stillbirth workup include cost of autopsy and genetic testing, availability of perinatal pathology expertise, health care professional knowledge about workup, and availability of skilled counseling to support bereaved parents in making decisions about autopsy and genetic workup. We propose solutions to overcome these barriers, including policy changes to expand access and a framework for high-quality patient counseling and decision support.

  PublisherDOI

Recent grants

• Implementing a Novel Consent Process for Biospecimen Research after Newborn Screening in Michigan Hospitals

  NIH · $4.6M · 2022–2027

• Improved Prenatal Genetic Screening Decision Making through Interactive Technology

  NIH · $408k · 2015–2018

• University of Utah Center of Excellence in ELSI research (UCEER)

  NIH · $8.0M · 2016–2025

Frequent coauthors

• Jeffrey R. Botkin

  University of Utah

  41 shared

• Erin Johnson

  University of Utah

  25 shared

• Rebecca Anderson

  Curtin University

  21 shared

• Bob Wong

  20 shared

• Louisa A. Stark

  Southern California Clinical and Translational Science Institute

  18 shared

• Aaron J. Goldenberg

  University School

  18 shared

• Naomi O. Riches

  University of Utah

  14 shared

• Nancy C. Rose

  University of Utah

  9 shared