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Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography

Award Number: K01HG014200
ORGANIZATION: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: TRAINING/TRAINEESHIP
PERIOD OF PERFORMANCE START DATE: 05/11/2026
PERIOD OF PERFORMANCE END DATE: 04/30/2030

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Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography - This is a K01 award application for Dr. Peter Taber, a sociocultural anthropologist and clinical informaticist to address ethical challenges related to secondary findings in whole genome sequencing. A K01 award will provide Dr. Taber with time to gain expertise in four areas: i) ethical, legal and social implications of pediatric genomic medicine; ii) healthcare partner-engaged implementation science in genomic medicine; iii) clinical informatics and health communication approaches in genomic medicine suitable for all populations; and iv) research leadership and management. These skills will enable Dr. Taber to meet his career goal of becoming an impactful independent investigator using social science and informatics to address ethical, legal and social implications of genomic medicine. Dr. Taber is supported by an interdisciplinary NIH R01-funded mentoring team, including: Dr. Guilherme Del Fiol, an expert in health informatics; Dr. Martin Tristani-Firouzi, a pediatric cardiologist and expert in pediatric genomic medicine; Dr. Sara Knight, a clinical psychologist and leading expert in engagement methods in genomic medicine; and Dr. Kimberly A. Kaphingst a leader in health communication in genomic medicine. Dr. Taber is also supported by advisors, including clinicians, genetic counselors and a bioethicist working with the whole genome sequencing program of interest. Whole genome sequencing is now a guideline-recommended first-tier test in pediatric medicine. Compared to conventional genetic testing, whole genome sequencing has a higher likelihood of returning findings unrelated to the indicator condition (“secondary findings”). Real-world guidance for ethically managing secondary findings is limited, because relatively few clinical whole genome sequencing programs have been implemented. Management of secondary findings that fails to recognize patient communication needs, cultural orientations and resource constraints risks exacerbating poor health outcomes. Addressing these challenges requires approaches that are context sensitive, and that engage healthcare partners. This project uses ethnography (the study or people in context) and human-centered design (design processes that emphasize input from end-users) to address secondary findings in whole genome sequencing. In Aim 1, ethnography will be used to understand families’ lived experiences with whole genome sequencing and receipt of secondary findings. In Aim 2, Healthcare Partner Panels consisting of healthcare staff and families will be used to design interventions and implementation strategies addressing secondary findings. In Aim 3, a prototype tool for patient education about secondary findings will be created. In addition to the general population, each aim will include two groups at risk of poor health outcomes in Utah: Spanish-speaking and rural residing families. A future National Human Genome Research Institute R01 will test strategies designed by healthcare partners (Aim 2), and a tool for patient education about secondary findings (Aim 3).


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2026 ( Subtotal = $658,836 )
2026	2026	UNIVERSITY OF UTAH	201 PRESIDENTS CIR	SALT LAKE CITY	UT	84112	SALT LAKE	USA	Human Genome Research	000	1	5/12/2026	NEW	$658,836
2026	2026	UNIVERSITY OF UTAH	201 PRESIDENTS CIR	SALT LAKE CITY	UT	84112	SALT LAKE	USA	Human Genome Research	001	1	5/14/2026	NEW	$0
														Subtotal = $658,836

Grand Total All Awards = $658,836

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Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography

Award Number: K01HG014200

ORGANIZATION: NATIONAL HUMAN GENOME RESEARCH INSTITUTE

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: TRAINING/TRAINEESHIP

PERIOD OF PERFORMANCE START DATE: 05/11/2026

PERIOD OF PERFORMANCE END DATE: 04/30/2030

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