# A Case Study on Latinx Community Perspectives about Creating a Cancer Genomic Variant Commons

> **NIH NIH R01** · ARIZONA STATE UNIVERSITY-TEMPE CAMPUS · 2020 · $64,754

## Abstract

PROJECT SUMMARY
Efforts to create a cancer genomic commons are already underway, yet data sharing practices face daunting
challenges. Ultimately, a genomic knowledge commons will only be successful if appropriate data-sharing poli-
cies that address disincentives for sharing and implementation challenges are developed and mapped onto the
institutions and actors who can enact such change. In an NHGRI-funded study (McGuire R01HG006460), a
diverse group of experts ranked data-sharing as the most important, yet least politically tractable policy challenge
among 17 posed in a modified Delphi process. The objective of this proposal is to engage expert advisors and
relevant stakeholders to identify and rank challenges, generate policy solutions, and translate findings into action
to ensure the success of a cancer genomic commons. Throughout the project, we will engage our expert multi-
disciplinary advisory committee to solicit their input. In Aim 1, we will conduct a historical case study of the
knowledge commons that exists in cancer genomics, as well as identify alternative frameworks for data sharing
practices. In Aim 2, we will analyze the case study and conduct qualitative interviews with stakeholders in rele-
vant constituencies to identify and further examine the challenges identified in Aim 1. In Aim 3, we will employ a
policy Delphi process with advisory committee members to refine, rank, and generate solutions to key policy
issues. This contribution will be significant because it will provide needed information to structure a cancer ge-
nomics commons which are critical to the integration of genomic information in the management of inherited
cancers. The approach is innovative by engaging a diverse and representative group of stakeholders, including
those involved with and potentially contributing to these data initiatives, to identify policy challenges, generate
solutions and map those to the appropriate institutions and actors. The work is feasible in our hands because
our team of established investigators have expertise in ethical and policy issues related to large-scale data shar-
ing and a track record of success working together on large collaborative projects addressing ethical and policy
issues in genomics.

## Key facts

- **NIH application ID:** 10154426
- **Project number:** 3R01CA237118-02S1
- **Recipient organization:** ARIZONA STATE UNIVERSITY-TEMPE CAMPUS
- **Principal Investigator:** Robert Mullan Cook-Deegan
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $64,754
- **Award type:** 3
- **Project period:** 2020-06-01 → 2022-03-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10154426

## Citation

> US National Institutes of Health, RePORTER application 10154426, A Case Study on Latinx Community Perspectives about Creating a Cancer Genomic Variant Commons (3R01CA237118-02S1). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10154426. Licensed CC0.

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