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Participant choices for return of genomic results in the eMERGE Network.

Publication ,  Journal Article
Hoell, C; Wynn, J; Rasmussen, LV; Marsolo, K; Aufox, SA; Chung, WK; Connolly, JJ; Freimuth, RR; Kochan, D; Hakonarson, H; Harr, M; Holm, IA ...
Published in: Genet Med
November 2020

PURPOSE: Secondary findings are typically offered in an all or none fashion when sequencing is used for clinical purposes. This study aims to describe the process of offering categorical and granular choices for results in a large research consortium. METHODS: Within the third phase of the electronic MEdical Records and GEnomics (eMERGE) Network, several sites implemented studies that allowed participants to choose the type of results they wanted to receive from a multigene sequencing panel. Sites were surveyed to capture the details of the implementation protocols and results of these choices. RESULTS: Across the ten eMERGE sites, 4664 participants including adolescents and adults were offered some type of choice. Categories of choices offered and methods for selecting categories varied. Most participants (94.5%) chose to learn all genetic results, while 5.5% chose subsets of results. Several sites allowed participants to change their choices at various time points, and 0.5% of participants made changes. CONCLUSION: Offering choices that include learning some results is important and should be a dynamic process to allow for changes in scientific knowledge, participant age group, and individual preference.

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Published In

Genet Med

DOI

EISSN

1530-0366

Publication Date

November 2020

Volume

22

Issue

11

Start / End Page

1821 / 1829

Location

United States

Related Subject Headings

  • Surveys and Questionnaires
  • Population Groups
  • Humans
  • Genomics
  • Genome
  • Genetics & Heredity
  • Electronic Health Records
  • Adult
  • Adolescent
  • 3105 Genetics
 

Citation

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Hoell, C., Wynn, J., Rasmussen, L. V., Marsolo, K., Aufox, S. A., Chung, W. K., … Prows, C. A. (2020). Participant choices for return of genomic results in the eMERGE Network. Genet Med, 22(11), 1821–1829. https://doi.org/10.1038/s41436-020-0905-3
Hoell, Christin, Julia Wynn, Luke V. Rasmussen, Keith Marsolo, Sharon A. Aufox, Wendy K. Chung, John J. Connolly, et al. “Participant choices for return of genomic results in the eMERGE Network.Genet Med 22, no. 11 (November 2020): 1821–29. https://doi.org/10.1038/s41436-020-0905-3.
Hoell C, Wynn J, Rasmussen LV, Marsolo K, Aufox SA, Chung WK, et al. Participant choices for return of genomic results in the eMERGE Network. Genet Med. 2020 Nov;22(11):1821–9.
Hoell, Christin, et al. “Participant choices for return of genomic results in the eMERGE Network.Genet Med, vol. 22, no. 11, Nov. 2020, pp. 1821–29. Pubmed, doi:10.1038/s41436-020-0905-3.
Hoell C, Wynn J, Rasmussen LV, Marsolo K, Aufox SA, Chung WK, Connolly JJ, Freimuth RR, Kochan D, Hakonarson H, Harr M, Holm IA, Kullo IJ, Lammers PE, Leppig KA, Leslie ND, Myers MF, Sharp RR, Smith ME, Prows CA. Participant choices for return of genomic results in the eMERGE Network. Genet Med. 2020 Nov;22(11):1821–1829.

Published In

Genet Med

DOI

EISSN

1530-0366

Publication Date

November 2020

Volume

22

Issue

11

Start / End Page

1821 / 1829

Location

United States

Related Subject Headings

  • Surveys and Questionnaires
  • Population Groups
  • Humans
  • Genomics
  • Genome
  • Genetics & Heredity
  • Electronic Health Records
  • Adult
  • Adolescent
  • 3105 Genetics