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The UCEER had 14 active research projects and 28 completed projects that are within the scope of the aims of the UCEER grant at the end of PY6. These projects are in varying stages of completion from pre-data collection to publication. Additionally, there are currently two projects that are pending final review for funding, and not included in the listed projects below. The active and completed projects are the following:

Active Projects


7.2 - Status of Prenatal Counseling of Congenital Heart Disease in Trisomy 13 and 18: A Pediatric Cardiologist’s Perspective 

Katherine A. Kosiv, MD, (PI), John Carey, MD, (Co-I), Bob Wong, PhD, (Co-I), Erin Johnson, PhD (Co-I).


Jorge L. Contreras, JD (RA Project)

6.12 - Impact Of Genetic Testing For Obesity On Stigma, Self-Beliefs, and Weight-Management Behaviors Among Weight-Management Clinic Patients

Lisa G. Aspinwall, PhD, (PI), Larissa A. McGarrity, PhD, (Co-I), Julianna Simonetti, MD, (Co-I)

6.9 - Determining Contexts for Building Self-Advocacy and Exploring Ethical, Leg/media/42741al and Social Implications of Living with Congenital Heart Disease

Rebecca Delaney, PhD (PI), Ian Lindsay, MD (Co-I), Erin Rothwell, PhD (Co-I)

6.8 - Differences of Sex Development: Stigma and Decision Making

Suorsa-Johnson PhD (PI), Fagerlin PhD, Sandberg PhD,

6.7 - Interest in and acceptability of offering multiple types of genetic information offered during routine OB/Gyn care among women aged 20-35

Kaphingst, PhD (PI), Rothwell PhD, Kohlmann MS GCG

6.6 - Improving the Communication of Cascade Screening for Lynch Syndrome: Patients’ and Genetic Counselors’ Perspectives

Zhong PhD (PI), Ozanne PhD, Kaphingst ScD, Espinel CGC MMSc

6.5 - Embryo Donation: factors and characteristics of those considering donation

Barishansky M.D.(MPI), Devine M.D. (MPI), O'Brien M.D., Carpinello M.D., Covington Ph.D., Lawson Ph.D., Purcell M.H.A R.N., Jahandideh Ph.D, Rothwell, PhD

5.13 – Educational Strategies for Genetic Counseling Graduate Programs


5.9 - The 5 Black Prisoners of Stateville Penitentiary: Race at the Origin of Pharmacogenetics

Tabery PhD (PI)

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

Rothwell PhD (PI), Johnson PhD, Francis PhD JD, Clark PhD, Workalemahu PhD, Blue MD, Silver MD

5.4 - Reckoning with the History of Eugenic Sterilization in Utah

Tabery PhD (PI)

6.2 - The Potential Of Open Source Genomic Science – Toward An Open Covid-19 Vaccine 

Contreras JD (PI)

6.1 - Using Bio-prediction to Take a Public Health Approach to Criminal Behavior 

Brown JD (PI)

5.3 -Mapping the Genetics-Coronavirus Social Media Discourse

Martinez PhD (PI), De Los Reyes M.A., Canary Ph.D., Kaphingst Sc.D. MPH

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

Canary PhD (PI), Kaphingst Sc.D. MPH (PI)


6.4 – Understanding How Genetic Ancestry Testing Influences the Communication and Construction o Blackness
Peters (PI)

6.3 – Investigating BRCA previvors’ utilization of social media for health decision making and social support
PI; Wellmann (PI)

5.14 - An Evaluation of Spinal Muscular Atrophy Treatment, Screening & Cost-effectiveness Strategies
Lawrence, RN MHLP PhD Candidate (PI)

5.8 - Assessing how providers facilitate informed decision-making about PGT-A for patients pursing IVF
Mathews B.A(PI), Rothwell PhD, Johnson PhD, Harward MS LCGC, Phillips. MS LCGC

5.5 - Characterizing Attitudes, Knowledge and Perceptions of Genetic Testing (Prueba Genética) among Spanish-speaking Latinx Media Outlets and Social Media Users
Chavez-Yenter MPH (PI), Kaphingst ScD, Holton PhD

Completed Projects

6.1 - Assessing and enhancing community engagement for a focus-group study of polygenic risk scores for suicide
Kious MD PhD (PI)

5.12 -Understanding the legal needs of adults with genetically-related intellectual disabilities
Francis PhD JD (PI), Brown JD, Nelson PhD

5.11 - Exploring the impact of the Nine Points document on University Licensing Practices
Contreras JD (PI)

5.10 - Why We Fear Genetic Informants Brown JD, (PI)

5.1 - Ableism in the American Eugenics Movement
Campbell PhD Candidate (PI), Francis, JD PhD

4.11 - Crowdsourcing Visual Understanding of Consent Terminology for Biobanking and Whole Genome Sequencing
Rothwell PhD (PI), Bonkowsky MD, Holton PhD, Botkin MD MPH, Wong PhD, Johnson PhD

4.7 - WTE II: Resources for What to Expect when You’re Expecting a Child with a Disability
Clark (PI) (UCLA), Eaton PhD, Cheek-O’Donnell PhD

3.6 - Carrier Screening Horizon Scanning: Social Media, News, and Networks
Holton, PhD (PI) (Communications), McGregor, Wong PhD (Nursing)

NOTE: We Implemented a pilot system numbering system in PY3. The following pilots were not numbered with the PY.# reference.

Improving Parental Understanding about Preimplantation Genomic Screening
Rothwell PhD (PI), Johnstone MD, Gurtcheff MD, Francis JD, Fagan PhD, Altizer PhD), Botkin MD

Legal, ethical, and regulatory issues in registries for genetic conditions
Francis JD, (PI) Squires JD

Informed consent for prenatal carrier screening
Rothwell PhD (PI)

Cost-Effectiveness Analysis of Screening and Treatment Strategies for Spinal Muscular Atrophy
Nelson PhD (PI), Botkin MD Anderson PhD Butterfield MD

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)

Cost-effectiveness Analysis of Screening and Treatment Strategies for Spinal Muscular Atrophy Types 2 and 3
Nelson PhD (PI), , Botkin MD Anderson PhD, Rothwell PhD, Butterfield MD)

Comic Book to Increase Health Literacy about Carrier Screening
Botkin, Jeffrey MD, MPH (PI)), Anderson Cheek-O’Donnell Rose Rothwell (Nursing), Wong

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,
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)

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)