Return of secondary findings in genomic sequencing: Military implications

Hellwig, Lydia D.; Turner, Clesson; Haigney, Mark; James, Cynthia A.; Murray, Brittney; Szpisjak, Dale F.; Muldoon, Sheila M.; Estrada-Veras, Juvianee; Krokosky, Alyson; Castro, Mauricio J. De

doi:10.1002/mgg3.483

Cited by 8 publications

(6 citation statements)

References 12 publications

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“…In ANOVA and linear regression analysis, there were no significant associations among genetic counselor demographics, their reported self‐efficacy from the GCSES scale, and military knowledge. These results are consistent with a qualitative study by Hellwig, Turner, Manolio, et al (2019) and Hellwig, Turner, and O’Neill (2019) suggesting that providers within the military health system itself had varied knowledge of the military‐specific policies that govern how genetic information is managed within military healthcare.…”

Section: Discussionsupporting

confidence: 89%

“…For example, a SM might be disqualified from service due to subsequent medical management guidelines if they have a positive genetic test results for malignant hyperthermia, arrhythmogenic right ventricular cardiomyopathy/dysplasia (ARVC/D), or other genetic predispositions related to sudden cardiac death. The medical management guidelines for those at high risk to develop these conditions, such as the restriction of strenuous physical activity or the contraindication of certain environments, may result in the inability of a SM to perform their duty (Hellwig, Turner, Manolio, et al, 2019). It is important to note that the medical evaluation process is not completely proscriptive and is designed to make personalized determinations such as the nature of the SMs duties and time already served.…”

Section: Introductionmentioning

confidence: 99%

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Are genetic counselors prepared to counsel active‐duty service members? A survey of genetic counselors' self‐efficacy, counseling techniques, and knowledge of military policy

Kamen

Hellwig

Maloney

et al. 2022

Journal of Genetic Counseling

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Given the expected rise in genomic sequencing projects within the US Military and the increased availability of genetic testing to the United States as a whole, current and prospective active‐duty service members (SMs) may undergo genetic counseling services in the civilian sector for pre‐test and post‐test counseling. The overall goal of this study was to better understand genetic counselors' preparedness to address military‐specific policies and psychosocial needs of patients from this underrepresented population. Members of the National Society of Genetic Counselors were asked to complete a four‐part survey including demographic information, Likert scale questions to separately rate self‐efficacy when working with civilians and SMs, case scenarios with multiple‐choice options and open‐ended responses to assess knowledge of military policy, and open‐ended questions regarding psychosocial scenarios related to military service. Eighty‐eight responses were analyzed using Microsoft Office Excel for the qualitive thematic analysis and SPSS/RStudio for the quantitative data. While over 75% (n = 69/88, SD = 0.48) of surveyed genetic counselors scored 4 of 4 on knowledge of military policy and reported similarly high levels of self‐efficacy when working with SMs (mean = 26.77 out of 30, SD = 4.15) and the general population (mean = 27.99 out of 30, SD = 4.31), the qualitative data suggested an alternative perspective. Up to 57% (n = 50/88) of responses were scored as expressing low confidence concerning knowledge of military policy. One potential explanation for this uncertainty may be due to participants reporting that they never (69.32% (n = 61/88]) or are unsure if (12.50% (n = 11/88]) they received training related to providing counseling services to SMs. We suggest the establishment of educational initiatives for genetic counselors focusing on how to discuss genetic testing with SMs in relation to their health and safety, well‐being, and potential employment implications.

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Section: Discussionsupporting

confidence: 89%

Section: Introductionmentioning

confidence: 99%

Are genetic counselors prepared to counsel active‐duty service members? A survey of genetic counselors' self‐efficacy, counseling techniques, and knowledge of military policy

Kamen

Hellwig

Maloney

et al. 2022

Journal of Genetic Counseling

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“…This is particularly important, given that secondary findings can indicate high risk of disease and potential medical management recommendations for otherwise perceived healthy individuals. Some of these secondary findings may have service‐related implications even in the absence of clinical phenotype (Hellwig et al, ).…”

Section: Introductionmentioning

confidence: 99%

Patient‐centered care and genomic medicine: A qualitative provider study in the military health system

Hellwig

Turner

O’Neill³

2019

Journal of Genetic Counseling

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The diagnostic and predictive information produced by genomic sequencing may impact medical management, and it is critical that providers and institutions are able to use this information appropriately for patient care. Guided by the patient-centered care model, we investigated provider perspectives of patient, provider, and system-level factors that could influence the implementation of genomic medicine within the integrated healthcare system of the US Department of Defense (DOD).The purpose of this study was to explore patient-centered care elements related to the application of genomic sequencing in a military healthcare facility to understand the current capability and key gaps for patient-centered genomic medicine. Twenty DOD healthcare providers were interviewed regarding their past experiences and future expectations of genetics and genomics. These semi-structured interviews were recorded, transcribed and analyzed. All providers interviewed had some experience with genetics, but the level of experience varied greatly. Providers reported widely differing degrees of knowledge and confidence regarding genetics and about military-specific policies regarding genetics which varied by specialty. In addition, most providers stated that their department did not currently have the infrastructure to allow for the care of patients with secondary genetic findings, defined as genetic findings which are intentionally examined because of their importance to healthcare management, but are unrelated to the reason the individual underwent sequencing.This study reveals gaps in key elements of patient-centered care related to genomic medicine that may be helpful to address in future implementation efforts.

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“…USAF policy prohibits any action based on a genetic variant if there is no accompanying phenotype. 6 The potential for GS information to harm service members’ careers has been highlighted in the literature as one of the major unique issues associated with integration of GS into military settings, 6 , 9 , 10 , 27 but our patient participants were largely unconcerned about this. Similarly, only one-third of HCPs in this study thought their patients’ careers could be impacted by GS.…”

Section: Discussionmentioning

confidence: 98%

“… 5 – 7 Issues surrounding privacy and the potential for discrimination present unique challenges in the military, where fitness for specific duties and perceived mission-readiness are often important considerations. 5 , 8 – 10 …”

Section: Introductionmentioning

confidence: 99%

Airmen and health-care providers’ attitudes toward the use of genomic sequencing in the US Air Force: findings from the MilSeq Project

Pereira

Hsu

Islam

et al. 2020

Genetics in Medicine

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Purpose: The use of genomic sequencing (GS) in military settings poses unique considerations, including the potential for GS to impact service members’ careers. The MilSeq Project investigated the use of GS in clinical care of active-duty Airmen in the United States Air Force (USAF). Methods: We assessed perceived risks, benefits, and attitudes toward use of GS in the USAF among patient-participants (n=93) and health-care provider-participants (HCPs) (n=12) prior to receiving or disclosing GS results. Results: Participants agreed that there are health benefits associated with GS (90% patients, 75% HCPs), though more HCPs (75%) than patients (40%) agreed that there are risks (p=.048). The majority of both groups (67% HCPs, 77% patients) agreed that they trust the USAF with genetic information, but far fewer agreed that genetic information should be used to make decisions about deployment (5% patients, 17% HCPs) or duty assignments (3% patients, 17% HCPs). Despite their hesitancy, patients were supportive of the USAF testing for non-disease traits that could impact their duty performance. Eighty-seven percent of patients did not think their GS results would influence their career. Conclusion: Results suggest favorable attitudes toward the use of GS in the USAF when not used for deployment or assignment decisions.

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Return of secondary findings in genomic sequencing: Military implications

Cited by 8 publications

References 12 publications

Are genetic counselors prepared to counsel active‐duty service members? A survey of genetic counselors' self‐efficacy, counseling techniques, and knowledge of military policy

Are genetic counselors prepared to counsel active‐duty service members? A survey of genetic counselors' self‐efficacy, counseling techniques, and knowledge of military policy

Patient‐centered care and genomic medicine: A qualitative provider study in the military health system

Airmen and health-care providers’ attitudes toward the use of genomic sequencing in the US Air Force: findings from the MilSeq Project

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