Current Pilot Projects
Development of an educational intervention (CRiTICS) for providers’ communication of a positive prenatal genetic screening result
Investigators: Gretchen Case and Sydney Cheek-O’Donnell.
Overall Aim: Create an educational intervention (CRiTICS) that uses rehearsal techniques to develop the interpersonal communication skills pediatric residents will need in difficult clinical conversations, such as disclosure of prenatal genetic screening results.
Specific Aim 1: Determine effective skills for communicating a positive prenatal genetic screening result.
Specific Aim 2: Develop and validate rehearsal scenarios for CRiTICS based on the content from Aim 1
Comic Book to Increase Health Literacy about Carrier Screening
Investigator: Botkin, Jeffrey MD, MPH
Anderson, Cheek-O’Donnell, Rose, Rothwell, Wong
Specific Aim 1: To draft a comic book to educate pregnant women and their partners about prenatal expanded carrier screening.
Specific Aim 2: The comic book’s content and images will be evaluated for comprehension, balance, tone and format with two focus groups of pregnant or recently pregnant women and their partners.
Specific Aim 3: Evaluate the utility of the comic book among pregnant women with a RCT compared to standard educational materials on knowledge and attitudes.
Carrier Screening Horizon Scanning: Social Media, News, and Networks
Investigators:AVERY E. HOLTON, PI. Shannon McGregor, BOB WONG co-I’s
Specific Aim 1: Specific Aim 1: Analyze the prevailing messages and sources involved with the discourse of genetic carrier screening on social media platforms.
Evolving Relationships and Evolving Standards: Developing norms for the return f secondary findings by primary care providers to their pediatric patients
Specific Aim: Identify and analyze key standard of care issues for potential negligence claims in cases involving genetic analysis of children.
Carrier Screening Decision-making: An Experimental Study of Media Influences on Conversational Development and Outcomes
Principal Investigator: Heather Canary
Co-Investigators: Avery Holton and Bob Wong.
Specific Aim 1: Identify exemplar articles from the pilot study sample of 227 articles that represent four experimental conditions: (1) positive tone with genetic counselor quoted; (2) positive tone with business organization representative quoted; (3) negative tone with genetic counselor quoted; (4) negative tone with business organization representative quoted.
Carrier Screening Media and Scholarly Coverage.
Investigators: Holton/ Canary/Wong.
Aims: Analyze the prevailing messages, sources, and frames used by the news media and research literature in their coverage of expanded carrier screening.
Review of Wrongful Birth/Life suits and State laws
Investigator: Botkin, Jeffrey MD, MPH
Research Team: Anderson, Brown, Francis and Law Fellow
Specific Aim 1: To create a scoping review of wrongful birth/life lawsuits .
Specific Aim 2: To create a catalog of states law on wrongful birth/law and the elements of the laws.
Utah Genome Project Enhanced Consent.
Aims: To develop a state-of-the-art informed consent form and process for WES/WGS with multimedia tools and determine the efficacy and participant satisfaction comparing standard approach to consent versus a state-of-the-art multimedia consent form and process.
What to Expect when You’re Expecting a Child with a Disability.
Investigators: Clark/Anderson/ Canary/Holton.
Aims: Using interviews with parents, construct a grounded theory about what it’s like to live with a child with a disability, when they needed practical social information, how the timing of presentation of the diagnosis influenced the process of making meaning of the situation, and what kinds of additional support parents need to arrive at a personally-meaningful interpretation of their parenting role.
Gene-Gnome: Improving Knowledge about Whole Genome Sequencing through interactive technology.
Aims: Develop and evaluate an innovative gaming application to enhance informed decision about whole genome sequencing