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. 2019 May;7(5):e636.
doi: 10.1002/mgg3.636. Epub 2019 Mar 20.

IGNITE network: Response of patients to genomic medicine interventions

Lori A Orlando  1 , Corrine Voils  2 , Carol R Horowitz  3 , Rachel A Myers  1 , Meghan J Arwood  4 , Emily J Cicali  4 , Caitrin W McDonough  4 , Toni I Pollin  5 , Yue Guan  5 , Kenneth D Levy  6 , Andrea Ramirez  7 , Alexandra Quittner  8 , Ebony B Madden  9
Affiliations

IGNITE network: Response of patients to genomic medicine interventions

Lori A Orlando et al. Mol Genet Genomic Med. 2019 May.

Abstract

Background: The IGNITE network funds six genomic medicine projects. Though interventions varied, we hypothesized that synergies across projects could be leveraged to better understand the participant experiences with genomic medicine interventions. Therefore, we performed cross-network analyses to identify associations between participant demographics and attitudes toward the intervention (attitude), plan to share results (share), and quality of life (QOL).

Methods: Data collection for demographics, attitude, share, and QOL surveys were standardized across projects. Recruitment and survey administration varied by each project's protocol.

Results: Participants (N = 6,817) were 67.2% (N = 4,584) female, and 37.4% (N = 3,544) were minority. Mean age = 54.0 (sd 14.a). Younger participants were as follows: (1) more positive in attitude pre-intervention (1.15-fold decrease/10-year age increase (OR)) and more negative after (1.14-fold increase OR); (2) higher in QOL pre-intervention (1.07-fold increase OR) and postintervention; (3) more likely to share results (1.12-fold increase OR). Race was significant when sharing results (white participants increased OR = 1.88), but not for change in QOL pre-postintervention or attitude.

Conclusion: Our findings demonstrate the feasibility of this approach and identified a few key themes which are as follows: age was consistently significant across the three outcomes, whereas race had less of an impact than expected. However, these are only associations and thus warrant further study.

Keywords: IGNITE; attitude; common measures; genomic medicine; plan to share; quality of life.

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Conflict of interest statement

None of the authors have any conflicts of interest to disclose. This work was funded by the NIH grants cited in the manuscript.

Figures

Figure 1
Figure 1
Proportion of participant's responses to survey questions for each project and in total. (a) Attitude towards intervention. (b) Plan to share intervention results. (c) Quality of life.
See this image and copyright information in PMC

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