# Patient Preferences for Collecting and Repurposing Genetic, Consumer and Health Care Information

> **NIH NIH R01** · UNIVERSITY OF PENNSYLVANIA · 2020 · $149,482

## Abstract

PROJECT SUMMARY/ABSTRACT
Health-relevant information no longer comes just from electronic medical records but also from
the digital footprints left behind when people use mobile applications, search the internet, wear
activity monitoring devices, access direct-to-consumer health care testing, or simply converse in
social media. Many efforts including those tied to the Precision Medicine Initiative (PMI) are
fueling the development of large population-based databases that link clinical and genetic
information. Programs are underway in a multitude of settings – academic and non-academic,
commercial and public sector – to link these genetic and clinical data with data obtained from
individuals' `health-relevant digital footprint' to gain insights into social, behavioral and
environmental health exposures and risk factors. Current approaches to privacy are highly
sector specific and blind to other considerations, such as the content of information or its
purpose. These approaches also provide only partial coverage for research activities that make
use of individuals' digital footprints. The proposed research will: a) use qualitative methods to
define the scope of the health-relevant digital footprint and characterize potential privacy
concerns from the perspective of experts and consumers; b) measure consumers' information
sharing preferences in different contexts using conjoint analysis and qualitative methods; and c)
determine consumers' preferences for privacy protections for different sources and users of
information and intended uses through mixed methods. Our approach is grounded in a
consequential ethics framework to determine whether protections applied to clinical information
might be applied to health-relevant digital information. Our central hypothesis is that whereas
current regulations emphasize whether information was obtained in the course of health care
encounters, consumers will care less about information source, and more about the purpose for
which it is later reused. The overarching goal of this research is to create a new framework for
genetic and health information privacy that considers individuals' health-relevant digital
footprints—beyond the boundaries of information gathered in medical encounters. The findings
will provide evidence for policymakers to create new approaches to health information privacy
that balance the interests of consumers with the immense research and clinical opportunities
embedded in novel sources of data.

## Key facts

- **NIH application ID:** 10165130
- **Project number:** 3R01HG009655-04S1
- **Recipient organization:** UNIVERSITY OF PENNSYLVANIA
- **Principal Investigator:** David T Grande
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $149,482
- **Award type:** 3
- **Project period:** 2017-09-13 → 2022-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10165130

## Citation

> US National Institutes of Health, RePORTER application 10165130, Patient Preferences for Collecting and Repurposing Genetic, Consumer and Health Care Information (3R01HG009655-04S1). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10165130. Licensed CC0.

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