Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography
About This Grant
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).
Grant Summary
Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography is a NHGRI - National Human Genome Research Institute grant providing up to $659K for university, nonprofit, healthcare org. Applications are due 2030-04-30 (open). Check eligibility and apply with FindGrants.
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How to Apply
Up to $659K
2030-04-30
- 1Confirm your organization is eligible for Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography from NHGRI - National Human Genome Research Institute, checking organization type, location, and any population or project requirements.
- 2Gather the required documents and information, including your organization details, project plan, and budget figures.
- 3Draft your application narrative and budget addressing the funder's priorities and review criteria. FindGrants can draft each section for you to review and edit.
- 4Review every section against the requirements checklist, then export a submission-ready application pack and submit it to NHGRI - National Human Genome Research Institute before the deadline.
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Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography: Frequently Asked Questions
Who is eligible for the Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography?
Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography is offered by NHGRI - National Human Genome Research Institute and is generally open to university, nonprofit, healthcare org. It is open to organizations nationwide unless the funder specifies otherwise. Review the specific eligibility terms before applying, since funders set their own requirements around organization type, location, and the population or project being served.
How much funding does the Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography provide?
Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography provides up to $659K per award from NHGRI - National Human Genome Research Institute. Actual award sizes depend on the scope of your project, available program funds, and the number of applicants, so build a budget that reflects realistic, allowable costs rather than the maximum figure.
When is the Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography deadline?
Applications for Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography are due 2030-04-30 (open). Because deadlines can change, verify the date with the funder, NHGRI - National Human Genome Research Institute, and give yourself enough time to prepare a complete, competitive application before the close date.
How do you apply for the Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography?
To apply for Addressing ethical challenges in whole genome sequencing implementation through human-centered design and ethnography, confirm your eligibility, gather the required documents, and prepare a narrative and budget that address the funder's priorities. FindGrants guides you step by step and can draft each section, then exports a submission-ready application pack for this grant from NHGRI - National Human Genome Research Institute.