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Challenges in Improving Genomic Literacy: Results from National and Regional Surveys of Genomic Knowledge, Attitudes, Concerns, and Behaviors

Joseph Jaeger, Amanda Hellwig, Elizabeth Schiavoni, Bridget Brace-MacDonald, Natalie A. Lamb, Laurene Tumiel-Berhalter, View ORCID ProfileMarc S. Halfon, Arun Vishwanath, View ORCID ProfileJennifer A. Surtees
doi: https://doi.org/10.1101/2022.08.26.505444
Joseph Jaeger
1University at Buffalo’s Genome, Environment and Microbiome (GEM) Community of Excellence, University at Buffalo, Buffalo, NY, USA
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Amanda Hellwig
1University at Buffalo’s Genome, Environment and Microbiome (GEM) Community of Excellence, University at Buffalo, Buffalo, NY, USA
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Elizabeth Schiavoni
1University at Buffalo’s Genome, Environment and Microbiome (GEM) Community of Excellence, University at Buffalo, Buffalo, NY, USA
2Genetics, Genomics and Bioinformatics Graduate Program, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo (SUNY), Buffalo, NY, 14203
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Bridget Brace-MacDonald
1University at Buffalo’s Genome, Environment and Microbiome (GEM) Community of Excellence, University at Buffalo, Buffalo, NY, USA
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Natalie A. Lamb
1University at Buffalo’s Genome, Environment and Microbiome (GEM) Community of Excellence, University at Buffalo, Buffalo, NY, USA
3Department of Biochemistry, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY, USA
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Laurene Tumiel-Berhalter
4Department of Family Medicine, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY, USA
5University at Buffalo’s Clinical and Translational Science Institute, Buffalo, NY, USA
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Marc S. Halfon
2Genetics, Genomics and Bioinformatics Graduate Program, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo (SUNY), Buffalo, NY, 14203
3Department of Biochemistry, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY, USA
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  • ORCID record for Marc S. Halfon
Arun Vishwanath
6Avant Research Group, LLC, Buffalo, NY, USA
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Jennifer A. Surtees
1University at Buffalo’s Genome, Environment and Microbiome (GEM) Community of Excellence, University at Buffalo, Buffalo, NY, USA
2Genetics, Genomics and Bioinformatics Graduate Program, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo (SUNY), Buffalo, NY, 14203
3Department of Biochemistry, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY, USA
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  • ORCID record for Jennifer A. Surtees
  • For correspondence: jsurtees@buffalo.edu
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Abstract

Purpose Information about genomics is increasingly available to mainstream society, with more and more emphasis on using genomic information to make health care decisions. To determine how prepared people are to use this knowledge to make critical health-related decisions, we assessed the public’s level of genomic literacy and whether this knowledge affects their engagement in behaviors related to genomics, such as getting genetic testing.

Methods A survey assessing perceived and actual knowledge, attitudes, concerns, sources of information, and behaviors related to genomics was administered to national and regional samples of participants. A hierarchical linear regression tested whether knowledge and attitudes predicted engagement in behaviors related to genomics.

Results Participants had good basic knowledge of genetics, though they were less familiar with the term “the human genome.” They also displayed positive attitudes towards genomic research, despite expressing many concerns. Both greater knowledge and more positive attitudes significantly and independently predicted greater engagement in genetic testing and other related proactive health behaviors.

Conclusion Knowledge and concerns about genomics impact the public’s ability and willingness to obtain genetic testing and engage in other proactive health behaviors. The public’s genomic literacy could be enhanced by integrating their knowledge (e.g of DNA) with broader concepts (e.g. the human genome and genomics) and how they relate to health. Future research is needed on interventions that do this, to improve the public’s genomic literacy through relationships that build trust

Competing Interest Statement

The authors have declared no competing interest.

Copyright 
The copyright holder for this preprint is the author/funder, who has granted bioRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license.
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Posted August 26, 2022.
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Challenges in Improving Genomic Literacy: Results from National and Regional Surveys of Genomic Knowledge, Attitudes, Concerns, and Behaviors
Joseph Jaeger, Amanda Hellwig, Elizabeth Schiavoni, Bridget Brace-MacDonald, Natalie A. Lamb, Laurene Tumiel-Berhalter, Marc S. Halfon, Arun Vishwanath, Jennifer A. Surtees
bioRxiv 2022.08.26.505444; doi: https://doi.org/10.1101/2022.08.26.505444
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Challenges in Improving Genomic Literacy: Results from National and Regional Surveys of Genomic Knowledge, Attitudes, Concerns, and Behaviors
Joseph Jaeger, Amanda Hellwig, Elizabeth Schiavoni, Bridget Brace-MacDonald, Natalie A. Lamb, Laurene Tumiel-Berhalter, Marc S. Halfon, Arun Vishwanath, Jennifer A. Surtees
bioRxiv 2022.08.26.505444; doi: https://doi.org/10.1101/2022.08.26.505444

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