Academics & Research


Current Pilot Projects

The UCEER currently has 14 active research projects and other completed projects that are within the scope of the aim of the UCEER funding.  These projects are in varying stages of completion from pre-data collection to publication.  The active and completed projects are the following: 

PILOT 5.3 -Mapping the Genetics-Coronavirus Social Media Discourse

Lourdes S. Martinez, PhD, PI, Pia De Los Reyes, M.A.,Co-I, Heather E. Canary, Ph.D., Co-I, Kimberly A. Kaphingst, Sc.D., MPH, Co-I

PILOT 5.4 - Reckoning with the History of Eugenic Sterilization in Utah

James Tabery, PhD, PI  

PILOT 5.7 - Determining patient needs for the development of a decision aid on stillbirth autopsy

Erin Rothwell, PhD, PI, Erin Johnson, PhD, Leslie Francis, PhD, JD, Lauren Clark, PhD, Tsegaselassie Workalemahu, PhD, Nathan Blue, MD, Bob Silver, MD 

PILOT 5.9 - The 5 Black Prisoners of Stateville Penitentiary:

Race at the Origin of Pharmacogenetics

James Tabery, PhD, PI

Pilot 5.13 - Educational Strategies for Genetic Counseling Graduate Programs

PI: Bonnie Jeanne Baty, MS, LGC, CGC, Clinical Professor EmeritaDepartment of Pediatrics, University of Utah

Co-investigator: Claire Davis,EdD, CGCProgram Director, Joan H. Marks Graduate Program in Human GeneticsSarah Lawrence College

Pilot 6.1 - Assessing and enhancing community engagement fora focus-group study of polygenic risk scores for suicide

PI:Brent Kious, MD, PhD

Pilot 6.2 - ELSI/Bioethics Grant Management Program Doctoral Mentorship

Tiffany Campbell, Doctoral Candidate, Philosophy

Rebecca Anderson, Director of UCEER, PhD, RN

Leslie Francis, PhD, JDJames Tabery, PhD


Law Projects

PILOT 5.10 - Why We Fear Genetic Informants

Teneille Brown, JD, PI

PILOT 5.11 - Exploring the impact of the Nine Points document on University Licensing Practices

Jorge Contreras, JD, PI

Pilot 5.12 -Understanding the legal needs of adults with genetically-related intellectual disabilities

Leslie Francis, PhD, JD, PI, Teneille Brown, JD, Co-I, Ryan Nelson, PhD, Co-I


Student Projects

Pilot 6.3 - Investigating BRCA previvors’ utilization of social media for health decision making and social support

Principal InvestigatorMariah Wellman, MAGraduate Student, Department of Communication

Co-Investigators Kimberly A. Kaphingst, ScDProfessor, Department of CommunicationInvestigator, Huntsman Cancer Institute

Avery Holton, PhDAssociate Professor, Department of Communication

Whitney Espinel, MS, CGCCancer Genetic Counselor, Huntsman Cancer Institute

Cindy Matsen, MDAssistant Professor, Department of SurgeryLeader, Women’s Cancers Center, Huntsman Cancer Institute

PILOT 5.1 - Ableism in the American Eugenics Movement

Tiffany Campbell (PhD Candidate), Leslie Francis, JD, PhD (Mentor)

PILOT 5.5 - Characterizing Attitudes, Knowledge and Perceptions of Genetic Testing (Prueba Genética) among Spanish-speaking Latinx Media Outlets and Social Media Users

Daniel Chavez-Yenter, MPH, PI, Kimberly Kaphingst, ScD, Avery Holton, PhD

PILOT 5.8 - Assessing how providers facilitate informed decision-making about PGT-A for patients pursing IVF

Nisha Mathew, B.A Biology, Erin Rothwell, PhD, Erin Johnson, PhD, Erin Harward, Genetic Counselor MS, LCGC Amber Methiesen Phillips, Genetic Counselor MS, LCGC

Pilot 5.14 - An Evaluation of Spinal Muscular Atrophy Treatment, Screening & Cost-effectiveness Strategies

Kendra Lawrence, RN, MHLP, PhD StudentPharmacotherapy Outcomes ResearchCollege of Pharmacy, University of Utah

Pilot 6.4 - UnderstandingHow Genetic Ancestry Testing Influences the communication and Construction of Blackness

Charnell Peters, Department of Communication, Rachel Alicia Griffin, PhD (Student Mentor)


Completed Projects

PILOT 4.6 - Mapping the Genetics Communication Circuit: Genetic Counseling, Family Conversations, and Information Seeking Behaviors


SDSU Co-Investigators:  Wayne Beach, Yea-Wen Chen, Lourdes Martinez, Matthew Savage,

Lisa Madlensky (Genetic Counselor, UCSD Moores Cancer Center)

U of Utah Co-Investigators: Avery Holton, Bob Wong, (Genetic Counselor, Huntsman Cancer Institute)

PILOT 4.7 - WTE II:  Resources for What to Expect when You’re Expecting a Child with a Disability

Lauren Clark, PI, Jacqueline Eaton, Co-PI, Sydney Cheek-O’Donnell, Co-I

In collaboration with a Community Advisory Board

And UMC Marketing team for video production

PILOT 4.11 - Crowdsourcing Visual Understanding of Consent Terminology for Biobanking and Whole Genome Sequencing

Erin Rothwell, PhD, PI, Joshua Bonkowsky, MD, Avery Holton, PhD, Jeff Botkin, MD, MPH, Bob Wong, PhD, Erin Johnson, PhD

Improving Parental Understanding about Preimplantation Genomic Screening

Rothwell PhD (PI) (Nursing), Johnstone MD(School of Medicine/OB/GYN),  Gurtcheff MD (Utah Fertility Center), Francis JD (Law), Fagan PhD (Philosophy), Altizer PhD (Engineering/Arts Entertainment and Engineering), Botkin MD (Pediatrics)

Graphic novel Presentation

Botkin, Jeffrey MD, MPH, (PI) (SOM/Pediatrics), Anderson RN, PhD (SOM/Pediatrics)

Legal, ethical, and regulatory issues in registries for genetic conditions

Francis JD, (PI) (Law), Squires JD (Law)

Informed consent for prenatal carrier screening

Rothwell PhD (PI) (Nursing)

Cost-Effectiveness Analysis of Screening and Treatment Strategies for Spinal Muscular Atrophy

Nelson PhD (PI), (Economics), Botkin MD (Pediatrics), Anderson PhD (Pediatrics), Butterfield MD (Pediatrics/Neurology)

Ethical, legal, and social implications of genetic risk factor discovery for suicide

Coon PhD (PI), (Adult Psychiatry, Epidemiology)

Israel’s Immigration Policies and the Question of Genetic Testing: New Developments on a Controversial Topic

Devir PhD, (PI) (Department: Department of World Languages and Cultures)

Cost-effectiveness Analysis of Screening and Treatment Strategies for Spinal Muscular Atrophy Types 2 and 3

Nelson PhD (PI), Economics, Botkin MD (Pediatrics), Anderson PhD (Pediatrics), Rothwell PhD (Nursing), Butterfield MD (Pediatrics/Neurology)

Cost data for analysis. The manuscript is being revised and submitted to Genetics in Medicine.

Comic Book to Increase Health Literacy about Carrier Screening

Botkin, Jeffrey MD, MPH (PI) (School of Medicine (SOM) Pediatrics), Anderson (SOM/Pediatrics), Cheek-O’Donnell (Fine Arts), Rose (SOM/OB-GYN), Rothwell (Nursing), Wong (Nursing) 

Review of Wrongful Birth/Life suits and State laws

Botkin, Jeffrey MD, MPH, (PI) (SOM/Pediatrics), Anderson RN, PhD (SOM/Pediatrics), Brown JD (Law), Francis JD (Law) and Fellow (Law)

Development of an educational intervention (CRiTICS) for providers’ communication of a positive prenatal genetic screening result

Gretchen Case (School of Medicine, Internal Medicine) and Sydney Cheek O’Donnell, (Humanities/ Fine Art/Theater), (Co-PI’s)

What to expect when you are expecting a child with a disability, Phase 2

Clark, RN, PhD (PI) (Nursing), Canary PhD (Communication), Avery Holton PhD (Humanities/ Communication), Anderson RN PhD (Pediatrics), Johnson PhD (Nursing)

Family Communication of Multigene Panel results

Elrick, (PI) (Communications), Kaphingst PhD (Communications), Kohlmann MS (Genetic Counseling), Brown JD (Law)

Reforming Trade Secret Law: Balancing Public Policy and Trade Secrets

Juergens, Law Fellow (Law), Francis JD, (Law)

Carrier Screening Horizon Scanning: Social Media, News, and Networks

Holton, PhD (PI) (Communications), McGregor, Wong PhD (Nursing)

Sex and Gender Minority Patient- Provider Communication Concerning Expanded Carrier Screening and Prenatal Genetic Testing

Layne MS, (PI) (Humanities/Communication/Dissertation), Canary PhD (Humanities/ Communication), Botkin MD (School of Medicine, Pediatrics

Evolving Relationships and Evolving Standards: Developing norms for the return of secondary findings by primary care providers to their pediatric patients

 Brown JD (PI) (Law)

Carrier Screening Decision-making: An Experimental Study of Media Influences on Conversational Development and Outcomes

Canary PhD, (PI) (Communications), Holton PhD (Communications), Wong PhD, (Nursing)

The BRCA War: Science, Law and Politics in the Struggle over Gene Patenting

Jorge L. Contreras JD (PI) (Law)

Public Understanding of Precision Medicine: The Impact of Communicating Uncertainty on Public Trust, Attitudes and Willingness to Participate

Ratcliff (PI) (Communications), Kaphingst (Faculty Mentor)(Communications/Huntsman Cancer Institute), Wong (Nursing)

Family Communication of Multigene Panel Results

 Kaphingst PhD, PI (U OF UTAH) 

Assessing Clinical Education Tools: Expanded Carrier Screening

Dugger (PI) (Genetic Counseling), Anderson (Genetic Counseling), Rothwell (Nursing)

Consumer Understanding of Secondary Data Usage and its Implications in Direct-to-Consumer Genetic Testing

Mladucky GC Student (PI), Committee: Anderson PhD (Chair, Pediatrics), Botkin MD (Pediatrics), Batty MS (Human Genetics)