Genetic Counseling Considerations for Military Beneficiaries

ABSTRACT

Genetic counseling for military beneficiaries poses unique challenges and counseling opportunities. In order to fully meet the needs of this population, genetic counseling involves critical ethical and psychosocial considerations. This article reviews some elements of genetic counseling that must be considered when working with beneficiaries in the military health system.

BACKGROUND

Advancements in genetics and genomics have allowed for more personalized medical management recommendations to be available across clinical disciplines. Clinical genetic and genomic testing is becoming standard of care across many sub-specialties and opportunities to participate in genomic research continue to grow.¹ With the continued growth in use of genomics also comes personnel and resource challenges related to informed consent, interpretation, disclosure, and medical management of genetic and genomic results.² Genetic counseling, the process of evaluating and understanding a family’s risk of an inherited medical condition, is an essential piece of the genetic testing process.³ The American Board of Genetic Counselors defines 22 practice-based competencies that an entry-level provider must demonstrate to successfully practice as a genetic counselor that span the four domains of (1) genetics expertise and analysis, (2) interpersonal, psychosocial, and counseling skills, (3) Education, and (4) professional development and practice.⁴

Obtaining informed consent and providing genetic counseling before genetic testing protect patients’ decision-making and autonomy. Many states have even implemented special protections regarding informed consent for clinical genetic testing and informed consent is an ethical cornerstone for responsible conduct of research, including genomics research.^5,6 Obtaining informed consent is a process that involves a dialogue and written documentation.⁷ Genetic counselors have specific training and expertise in these critical conversations and decision-making processes.⁴

As genetic and genomic medicine continues to grow in the civilian population, so does its use in the military health system (MHS).⁸ Genetic testing in the military population dates back to 1969.⁹ Many critical health and readiness impacts of genomics have been identified for both the current state and for future use in the MHS and DoD.¹⁰ For example, identification of individuals at risk for adverse drug reactions to certain medications can allow for better medication prescription, a decrease in preventable morbidity and mortality, and service members (SMs) back in the field more quickly. In addition, identification of individuals at higher risk for certain conditions can also lead to more appropriate and personalized screening and medical management. Identifying a disease early (rather than at later stages) can often be lifesaving with early interventions. Employment of genetic testing in these settings of preventive medicine can lead to many readiness benefits.

In addition to the genetic counseling considerations that are important for all patients, genetic testing in the military population also carries some additional unique considerations. The Genetic Information Non-Discrimination Act does not apply to the military as an employer, but there are some military-specific policies that govern the use of genetic information.¹¹ Given that the health of an SM directly impacts their ability to successfully carry out their mission that may have national security impacts, the military outlines certain health conditions that are non-compatible with service. A diagnosis of these health conditions may disqualify individuals from enlisting, render SMs unfit for continuation of active duty, and may affect eligibility for disability compensation. Each branch has its own evaluation process for determining if a specific medical condition is disqualifying. To be disqualifying, a genetic condition must impact the ability of the SM to perform their duties or be deployed worldwide. For most cases, this means that the SM has a phenotype or symptoms that are incompatible with their duty. In rarer circumstances, genetic variants associated with risk, such as in the case of some secondary findings (genetic findings important to healthcare management that are unrelated to the reason that the individual underwent genomic sequencing), can themselves have medical management recommendations that are incompatible with military service.¹²

SMs and military beneficiaries are engaging with genetics and genomics in the clinical, research, and recreational setting. In fact, recently, the Pentagon released a policy that discouraged SMs from engaging in direct-to-consumer testing.¹³ Recent studies, however, have indicated that providers even within the MHS differ widely in terms of their genomic literacy and knowledge and confidence about counseling military members about genetic test results.^14,15

With the increased use of genetics and genomics in the MHS, it is important to consider some of the unique genetic counseling issues that may arise when discussing genetic testing in this setting. This article presents three cases to highlight some of these counseling issues in this system.

HIGHLIGHTED CASES

Impact on Career

Case 1: A 25-year-old woman was referred to genetics because of an abnormal EKG and abnormal echocardiogram showing mild thickening of the right ventricle. While discussing the option of genetic testing, benefits, limitations, and risks were reviewed. The patient voiced that she was worried that a specific diagnosis might be incompatible with her career in the military and that she felt that her unit needed her. She also discussed that she was worried about the health of her daughter. After a lengthy discussion, the patient elected to undergo genetic testing.

This case highlights the importance of considering risks and benefits of genetic testing, one of the essential components of informed consent.¹⁶ Although the possible health benefits may be similar to genetic testing considerations in the civilian world—including influencing personal and family medical management—some of the possible outcomes are unique to active duty personnel, including potentially impacting one’s ability to serve or continue to serve in the military, depending on the clinical scenario. Providers and researchers offering genetic testing in the MHS should be prepared to discuss all risks and benefits with patients and participants, including those that are particular to this system.

The military system also instills concepts of collectivism and dedication to service, which is critical in considering counseling cases, such as case 1. These concepts are expressed in the core values of the services. For example, one core value of the U.S. Air Force is “service before self,” and the seven core Army values include “selfless service, duty, and loyalty”.^17,18 It is not uncommon for SMs to discuss feelings related to their abilities to fulfill these values. Although the SMs might initially consider that results of their testing might impact their ability to physically serve with their unit and do their duty, we often also encourage them to consider the potential ramifications to their unit and their country if the SM’s health jeopardizes the mission. For example, if an SM is deployed and has a cardiac event in the field, responding to this may expose the location of the unit and utilize medevac resources that the unit may need from subsequent engagement with the enemy. Considering all of the possible impacts allows the SMs to make an informed decision in line with their personal values and the core values of the military.

In this specific case example, the patient was clinically diagnosed with arrhythmogenic right ventricular cardiomyopathy (ARVC) and elected to pursue genetic testing. A pathogenic (disease-causing) variant associated with ARVC was identified. Ultimately, medical management recommendations for this patient resulted in a medical board being initiated. It is important to note that each patient should be examined on a case-by-case basis regarding actions that should be taken based on the results of genetic testing. Medical management decisions (and thus potential impact on career) should be made based on the personal context for each patient.

Support Systems

Case 2: A pregnant couple was referred to genetics to discuss genetic testing as the couple’s first child has been diagnosed with Fragile X. The parents discussed their tremendous guilt in not doing testing during the pregnancy of their first child and for passing this on to him. Their guilt was causing great anxiety and disruption to their daily lives. When asked about their support system, the family responded that they have no friends, family, or other support system in this area where they recently moved. Because of their career, they re-locate frequently and have not been able to find support.

There are many well-documented benefits of having support systems for patients with serious health issues and for patients making difficult decisions.¹⁹ In addition, those who have less social relationships and social support face greater risks of adverse outcomes.²⁰ Assessment of patient needs and patient support systems is the first step in helping to address those needs and is an important component of pretest and posttest genetic counseling.²¹ Although civilian families and military families both may have varying support systems to help navigate some of the complex decision-making, managing implications of genetic information, grappling, and navigating the psychosocial effects inherent in genetic and genomic medicine, military travel requirements may exacerbate some of these issues. It is important to consider the often more transitory nature of SMs, not only in terms of access to medical care and longitudinal care plans but also for meeting the psychosocial needs of these families. As such, it is important to consider appropriate resources for this population, which may include both location-dependent and location-independent resources (such as telehealth and web-based support groups).

In this case, the genetic counselor was able to identify support resources that were most appropriate for this family. The family connected with a virtual support group that allowed them to maintain relationships with the group even if they needed to re-locate. The family did pursue genetic testing for their second pregnancy and this testing also revealed that the child had Fragile X. In conjunction with genetic counseling, the family was able to utilize the support resources that the genetic counselor provided them to cope with this result.

Military Families: Expectations for Family Members to Join

Case 3: A 35-year old-male was referred to genetics because of his personal history of sudden cardiac arrest at age 35 while exercising. Although discussing the option of genetic testing, the patient discussed that he was unsure if he wanted to pursue genetic testing because even if a disease-causing variant was identified, he worried about the implications for his children. He wanted them to have a normal childhood and be able to make their own decisions about joining the military and was worried that if they subsequently had testing, the risk information might be disqualifying for them.

This case highlights several important counseling concepts. Understanding the motivations behind electing to pursue or not pursue genetic testing can be very important.²² Genetic information can be important not only for medical management of the individual but can be important for the health and management of family members as well. Parents begin to have expectations about their children very early on. It is well documented that changes to these expectations, such as in the case of illness or disease, can lead to grief of that loss.²³ In addition to expectations about a child’s life including activities and experiences, in the MHS, there may often be expectations of the child’s intended career path. The idea of legacy can be very important in military families. When this expectation is threatened or does not meet reality, this can have serious psychosocial impacts on families. These expectations and the possibility of not meeting these expectations should be considered when discussing hereditary conditions or genetic testing.

In this case, after a long conversation about genetic testing, this patient elected to pursue genetic testing. He understood that this choice did not mandate that his children must have genetic testing. Genetic testing did not reveal a definitive answer for his sudden cardiac arrest at this time. Clinical follow up is recommended for first degree family members.

Other Important Counseling Contexts

These three case examples highlight a few counseling contexts to consider in regard to genetic testing in the MHS. Each patient, family, and context is unique, and there are many genetic counseling issues to consider for patients and families in the MHS. A few other counseling contexts to consider as appropriate include the higher rate of PTSD—which is important as critical health experiences such as cardiac arrest and ICD shock can also lead to PTSD, the diversity of the military population in terms of race, culture, and socioeconomic status—which are critical in patient and family-centered decision-making processes, and the perceived benefits and limitations of the Extended Family Member Program, among many others. Although some of these counseling considerations are unique or more complex given the military health setting, the principles of genetic counseling remain essential to use in understanding and addressing these critical issues.

SUMMARY

We have highlighted several counseling considerations that can arise in discussions surrounding genetic testing for members of the military. Consent is a critical component of clinical genetic testing, which includes a discussion of risks and benefits of testing. Given the spectrum of individual values and situational responses, it is important to explore these with patients, including considerations unique to the military. Providers involved in facilitating genetic testing in this population should be prepared that these and other counseling topics may arise in the context of genetic testing and may wish to seek genetic counseling resources to address these. When considering genomic medicine initiatives in the MHS, it is essential to consider these and other genetic counseling needs. It is important to consider the benefits, risks, and limitations of testing in terms of operational readiness, population health, individual readiness, and individual health and wellbeing. A precision medicine strategy in the MHS should take all of these into account. In addition, at this time, there are few genetic counselors and clinical geneticists in the MHS to address these counseling issues. Future precision medicine initiatives should also take into account that more genetic counselors and geneticists, information technology solutions such as clinical decision supports tools, education initiatives for providers, and alternative delivery models like telehealth will be needed to address the multitude of counseling issues for genetic testing in the MHS.

FUNDING

This work was supported by National Heart, Lung, and Blood Institute (NHLBI) Grant IAA-A-HL-007.001.

CONFLICT OF INTEREST

None declared.