Attitudes among Parents towards Return of Disease-Related Polygenic Risk Scores (PRS) for Their Children
Abstract
:1. Introduction
2. Materials and Methods
2.1. Participants
2.2. Hypothetical Risk Report
2.3. Interviews
2.4. Coding
3. Results
3.1. Study Population
3.2. Understanding of Report
3.2.1. Absolute Risk Framing Was Preferred
3.2.2. Absolute Risk Tended to Be Perceived as Low Risk
3.2.3. Factors Contributing to the Risk Perception
3.3. Risk-Reduction Steps
3.3.1. Behavioral Barriers to Taking Risk-Reduction Steps
3.3.2. Lack of Resources Was a Barrier
3.4. Reactions to the Report
3.4.1. Negative Emotions in Response to the Report
3.4.2. Positive Emotions in Reaction to the Report
3.5. Value of the Report
3.5.1. Report Prepared Them to Take Action to Reduce Risk
3.5.2. Value of Primary Care Provider Explaining the Results
4. Discussion
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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N | Percent | N | Percent | ||
---|---|---|---|---|---|
Total Interviewed | 40 | 100.0% | 40 | 100.0% | |
Interview Site | Condition on Report | ||||
CHOP | 20 | 50.0% | Type 2 Diabetes | 20 | 50.0% |
BCH | 20 | 50.0% | Asthma | 20 | 50.0% |
Type of Risk on Report | Gender | ||||
Relative | 20 | 50.0% | Female | 39 | 97.5% |
Absolute | 20 | 50.0% | Male | 1 | 2.5% |
Race | Education | ||||
Black/African American | 26 | 65.0% | Some High School | 1 | 2.5% |
White | 3 | 7.5% | High School | 7 | 17.5% |
More than one race | 11 | 27.5% | Post High School Training other than college | 1 | 2.5% |
Ethnicity | Some College | 16 | 40.0% | ||
Hispanic | 9 | 22.5%% | Bachelor’s Degree | 6 | 15.0% |
Not Hispanic | 31 | 77.5%% | Master’s Degree | 8 | 20.0% |
Insurance | Doctoral Degree | 1 | 2.5% | ||
Current of former employer or union | 21 | 52.5% | Age | ||
CHIP | 4 | 10.0% | 21–30 | 3 | 7.5% |
Medicaid, medical assistance, or any kind of government assistance | 13 | 32.5% | 31–40 | 20 | 50.0% |
Other Source | 2 | 5.0% | 41–50 | 15 | 37.5% |
Genetic Experience | 51–60 | 2 | 5.0% | ||
Previous Experience | 15 | 37.5% | |||
No Experience | 24 | 60.0% | |||
Did not Answer | 1 | 2.5% |
Domains | Themes |
---|---|
Understanding of Report | Errors in perceiving risk scores |
Absolute risk framing was preferred | |
Absolute risk tended to be perceived as low | |
Several factors contributed to risk perception such as family history, trust in PCP, and medical complexity of the child | |
Risk Reduction Steps | Parents are willing to take risk-reduction steps |
Behavioral factors, diet/lifestyle, and lack of resources are barriers to taking risk reduction steps | |
Reactions to Report | Negative emotions were felt in response to the report including anxiety, worry and confusion |
Positive emotions were felt in response to the report including curiosity, relief, and confidence | |
Most participants felt negative emotions at first, but by the end of the session felt positive ones | |
Value of the Report | Report prepared participants to take action to reduce risk |
High value of primary care providers explaining the results with participants |
N | Percent | ||
---|---|---|---|
Total Interviewed | 40 | 100.00% | |
Overall | |||
Report Liked Best | Absolute Risk | 20 | 50.00% |
Relative Risk | 15 | 37.50% | |
Neither | 5 | 12.50% | |
Most Helpful Report | Absolute Risk | 19 | 47.50% |
Relative Risk | 14 | 35.00% | |
Neither | 7 | 17.50% | |
Most Confusing Report | Absolute Risk | 6 | 15.00% |
Relative Risk | 7 | 17.50% | |
Neither | 27 | 67.50% |
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Terek, S.; Del Rosario, M.C.; Hain, H.S.; Connolly, J.J.; Behr, M.A.; Harr, M.; Hakonarson, H.; Holm, I.A. Attitudes among Parents towards Return of Disease-Related Polygenic Risk Scores (PRS) for Their Children. J. Pers. Med. 2022, 12, 1945. https://doi.org/10.3390/jpm12121945
Terek S, Del Rosario MC, Hain HS, Connolly JJ, Behr MA, Harr M, Hakonarson H, Holm IA. Attitudes among Parents towards Return of Disease-Related Polygenic Risk Scores (PRS) for Their Children. Journal of Personalized Medicine. 2022; 12(12):1945. https://doi.org/10.3390/jpm12121945
Chicago/Turabian StyleTerek, Shannon, Maya C. Del Rosario, Heather S. Hain, John J. Connolly, Meckenzie A. Behr, Margaret Harr, Hakon Hakonarson, and Ingrid A. Holm. 2022. "Attitudes among Parents towards Return of Disease-Related Polygenic Risk Scores (PRS) for Their Children" Journal of Personalized Medicine 12, no. 12: 1945. https://doi.org/10.3390/jpm12121945
APA StyleTerek, S., Del Rosario, M. C., Hain, H. S., Connolly, J. J., Behr, M. A., Harr, M., Hakonarson, H., & Holm, I. A. (2022). Attitudes among Parents towards Return of Disease-Related Polygenic Risk Scores (PRS) for Their Children. Journal of Personalized Medicine, 12(12), 1945. https://doi.org/10.3390/jpm12121945