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Research Highlight

Incorporating Precision Medicine in VA Healthcare: A Qualitative Analysis of Veterans' Considerations and Interests in Genome Sequencing

The VA Genomic Medicine Services (GMS) and the VA Million Veterans Program (MVP) were launched in 2010 and 2011, respectively. The goals of these programs were 1) to establish national clinical genetic counseling services for Veterans,¹ and 2) to create a national VA-based mega biobank and cohort study to accumulate generalizable, representative, and longitudinal data on Veterans’ health and health risks. The MVP was richly informed by the Electronic Health Record, Veteran-reported health experiences and outcomes, and biomedical information, including genetics and genomics.²

In the following decade, VA introduced new genomic technologies for informing health recommendations and medical care. VA conducted several studies of VA health professionals’ beliefs and experiences with the adoption of precision medicine and two early surveys sought Veterans’ opinions to inform the launch of MVP.^1-3 Yet, little evidence has been available on Veterans’ perspectives on these emerging genomic technologies.

We sought to understand Veterans’ interests in precision medicine and to align new policies and practices with Veterans’ needs, goals, and preferences for genome sequencing. In this study, we conducted 14 focus groups of 65 Veterans in Boston, Massachusetts, Durham, North Carolina, and Salt Lake City, Utah. The sample included 18 percent women Veterans, 34 percent African American Veterans, 6 percent more than one race, 5 percent Hispanic ethnicity, and 52 percent White Veterans. We moderated the focus groups using a discussion guide. We analyzed de-identified transcript data using deductive content coding and subsequent inductive qualitative analysis of the coded data.

We asked Veterans about their understanding of genetic testing, genome sequencing, and precision medicine, their interest in results from genome sequencing, their concerns about the impact of this information on privacy, insurance and healthcare costs, and their considerations about sharing genetic information with their children and other family members. Four themes that emerged from the qualitative analyses of the transcript data are presented below and are accompanied by quotes in italics, each from a unique individual, that illustrate a range of perspectives among the focus group participants.

Enthusiasm for personal genomic information. Veterans’ enthusiasm for improving their understanding of personal health information based on genetics emerged as the first theme from the focus group discussions. Veterans described the information as “exciting,” “empowering,” “beneficial,” and “valuable.” Most described genetic and genomic information as allowing them to be proactive in treatment, medication, and prevention decisions. The excitement about genomic medicine extended to MVP and most described the program as highly valuable; Veterans stated that they hoped to learn more about the discoveries and other findings coming from MVP studies.

All groups discussed the greater number and complexity of results available through genome sequencing. Only a few Veterans saw the complexity of genomic results as difficult or distressing. Most expressed interest in genome sequencing even if the information did not inform a diagnosis, course of care, or prevention – or yielded results that indicated a genetic variant of unknown significance. Most commented on the advantages of obtaining more information from genome sequencing than genetic testing would provide.

I definitely want to know. I think that all the information about my personal healthcare should be delivered to me as it’s known….So I think for me, giving me the power, giving me the knowledge, giving me the control over every possibility, things that could come up even if they’re not treatable now is the best power, that knowledge of what can and can’t be. But I think it’s the whole point of this type of genome study, that’s what we need to do is to educate, empower, and inform our Veterans about their personal healthcare.

I would really like to see the VA do more research, release the results. And if there’s things that can benefit Veterans’ lives through lifestyle choices and having more information, I feel like that’s better for everyone. And especially because the VA has done the Million Veteran Program and they have a large sample to use for testing, for research, and to help improve people’s lives through education and just more information. I think that would be very beneficial.

Envisioning genomic medicine. Veterans’ aspirations for genome sequencing emerged as a second theme of the focus group discussions. Veterans discussed their hopes for genomic medicine and the promise of precision medicine even though they acknowledged limits to their understanding of genetics and its uses. Veterans saw the potential that genomic information could inform diagnosis, treatment, or prevention of a condition. Some reflected on genomic information used to inform reproductive decision making and to guide family decisions about care for children with hereditary conditions.

Veterans in all the groups expressed the hope that genomic medicine would provide an explanation for how toxic exposures during their military service may contribute to health conditions. While a few thought that they would not want to know about a condition that could not be treated, a large proportion of participants described their interest in knowing whether they have an untreatable health condition, noting the importance of the diagnosis in planning for their lives and their families. Many indicated an interest in working with the VA Genomic Medicine Service and VA doctors to help them understand the genomic information and its potential use in their healthcare.

Even if it’s something that’s terminal, if it’s something that’s going to go with me through my lifetime, I would still like to know regardless. And you don’t want to be blindsided. It would be nice to basically just know and then that way you can continue with your quality of life or make whatever decisions you need to make.

…maybe you’re exposed to something and we think that it might cause this condition or illness but by looking at the entire genome or by looking at more of the information that’s available, maybe it would also cause other things.…so say you’re exposed to something like Agent Orange before you have children and it causes a change in your genome so then that change may produce undesired results in your children.

Family matters. The implications of genomic information for Veterans’ family members, especially their children, emerged as a third theme of the focus group discussions. Most Veterans acknowledged feelings of responsibility for sharing their genetic information with family members to facilitate decision making about additional genomic sequencing for diagnosis, reproductive decisions, and managing health risk information. Some Veterans noted the challenges of these family discussions, especially the potential to increase family discomfort and distress. Yet most embraced the opportunity to help their children with significant health and life decisions based on genetic information.

I want to know and I think I should know so that my children can know. And I don’t know how you explain that to a 16 and 18 and 20-year-old when they’re deciding, do you have kids or not?...I would at least want to share that and know it.

Value of information weighs heavily in decisions where privacy is a concern. A fourth theme of the focus group discussions reflected two critical factors that influence choices about genetic testing and genome sequencing: 1) privacy and information security concerns, and 2) the significance of genomic information in decisions about health and healthcare. Many of the Veterans in this sample noted that their desire to obtain genetic information surpassed their concerns about privacy and data security in doing so. Some noted that they had experienced a privacy breach in the past and now accepted the potential for loss of privacy; these Veterans wanted the health information provided through genome sequencing more than they were concerned about loss of privacy.

Personally, I’d rate the benefit that genetics could have to improving health above the privacy concerns and those kinds of things. But I don’t think the privacy concerns can be completely ignored because of those benefits. So it’s kind of like you got to go a little bit in both directions.

Our findings highlight the significance of the VA clinical and scientific advances in genomics and precision medicine for Veterans and their families, and identify key challenges. Across the groups, Veterans consistently expressed strong enthusiasm for genomic information to guide healthcare and prevention broadly. Some choices appear preference sensitive, such as receiving information about incurable health conditions. Veterans expressed interest in education and learning from VA research on genomics to inform their choices related to environmental exposures and hereditary conditions. A challenge for VA precision medicine services is how to serve Veterans’ families and children who are impacted by information from VA genome sequencing. Our findings suggest that opportunities for education from VA programs, such as GMS and MVP, could address some of the challenges in meeting Veterans’ needs and goals.

Acknowledgements

This work was completed with support from the VA Health Services Research and Development Service (IIR16-286, entitled Aligning Policy and Healthcare Services with Veterans Values and Preferences for Results from Genome Sequencing). This qualitative study was conducted with the contributions of Barbara Lerner, Nina R. Sperber, and Corrine I. Voils.

References

1. Scheuner MT, et al. “Delivery of Clinical Genetic Consul-tative Services in the Veterans Health Administration,” Genetics in Medicine August 2014;16(8):609-19.
2. Gaziano JM, et al. “Million Veteran Program: A Mega-bio-bank to Study Genetic Influences on Health and Disease,” Journal of Clinical Epidemiology February 2016;70:214-23.
3. Sperber NR, et al. “Barriers and Facilitators to Adoption of Genomic Services for Colorectal Care within the Veterans Health Administration,” Journal of Personalized Medicine April 28, 2016;6(2):16.