Community Mental Health Journal

, Volume 48, Issue 5, pp 584–591 | Cite as

Knowledge and Attitudes about Personalized Mental Health Genomics: Narratives from Individuals Coping with Serious Mental Illness

  • Danielle N. Potokar
  • Catherine H. Stein
  • Olivia A. Darrah
  • Brent C. Taylor
  • Scott R. Sponheim
Original Paper

Abstract

The present qualitative study examined the personal accounts, elicited via semi-structured interview, of nine United States military veterans with serious mental illness to describe their knowledge, attitudes, and beliefs about psychiatric genetics, genetic testing and counseling for mental illness. The aim of the research was to elucidate issues from the perspective of adults with mental illness that may inform the education and training of mental health providers on basic genetic counseling. Findings suggest that participants had some basic knowledge about genetics, were interested in psychiatric genetic testing, and had an awareness of both positive and negative aspects of genetic test results. Participants tended to have overly optimistic ideas about current advances in psychiatric genetics and were motivated to undergo genetic testing for the good of their families and to benefit society. Implications of findings for research and practice are discussed.

Keywords

Serious mental illness Psychiatric genetic testing Genetic knowledge Qualitative research Personal genomics 

Introduction

The role of genetic factors in the etiology of mental health conditions such as schizophrenia, schizoaffective disorder, and bipolar disorder has been well documented (Gottesman 2001; Craddock et al. 2005). Although the field of genetic testing and counseling for physical conditions has grown substantially over the past decade (Lerman et al. 2002), there has been relatively little discussion about the role of personalized genetic information within the context of mental health care. Previous studies suggest that adults coping with serious mental illness and their families are interested in learning about genetic testing (Austin et al. 2006), but are typically offered little or no information about the potential risks and benefits of personalized genomics (Austin and Honer 2007). A general reluctance on the part of mental health professionals to recognize the potential of psychiatric genetics may further complicate access to genetic testing (Douthit 2006). The present qualitative study examines the views of adults with serious mental illness about the genetics of mental illness and their feelings about personalized genetic testing. The aim of the research is to elucidate issues from the perspective of adults with mental illness that may inform the education and training of mental health providers on basic genetic counseling.

Genetic Testing for Adults with Mental Illness

Genetic testing for psychiatric conditions remains controversial, with scholars engaged in heated debates on both sides of the issue. Advantages cited for psychiatric genetic testing include the possibility of improving outcomes through early detection or prevention, and tailoring treatment based on individual results of testing (Meiser et al. 2005). Critics argue that results of psychiatric genetic testing can cause psychological distress to individuals and families and may be the basis for social stigma and various types of discrimination (Finn and Smoller 2006). Some scholars have begun to question the basic involvement of genes in psychiatric conditions (Joseph 2004).

Resistance to psychiatric genetics on the part of mental health professionals may further complicate genetic counseling in the public mental health system. As Douthit (2006) notes, mental health professionals often lack a core knowledge base in genetics that is required to evaluate psychiatric genetic claims and accurately disseminate information to clients and families. Resistance to genetic testing for psychiatric conditions may also stem from models of training in the helping professions that favor contextual and strengths model approaches to mental health over more deficit-focused medical approaches. Mental health professionals may also confuse psychiatric genetic testing with “genetic determinism” (Douthit 2006, p. 17) the simplistic and inaccurate view that genes equate to unequivocal outcomes. Professionals may falsely conclude that their support of psychiatric genetics is tantamount to a blanket endorsement of all forms of medical intervention for mental illness (Douthit 2006).

Despite practitioner resistance and scholarly debates about its merits, there is some evidence to suggest that individuals coping with mental illness and their families are generally interested in psychiatric genetic testing. In an online survey of 68 individuals who self-identified as having schizophrenia and 145 of their relatives, Lyus (2007) found that 72% of people who reported having schizophrenia and 74% of their relatives thought that genetic counseling would be useful to them. Almost half of affected individuals (45%) and their relatives (41%) reported that their family planning decisions were influenced by the presence of schizophrenia in their family. The vast majority of the sample (94%) reported that they had never been offered genetic counseling.

In a Danish study of 397 individuals diagnosed with major depression, bipolar disorder or anxiety disorder (Laegsgaard and Mors 2008), 92% of individuals expressed an intention for themselves and their children to undergo psychiatric genetic testing. Factors related to interest in genetic testing included trust in professions, being a parent, and feeling prepared to actively deter the effects of a psychiatric disorder if tested positive for being at risk for genetic transmission. Factors related to a lack of interest in genetic testing included a fear of making difficult decisions and feeling ill prepared to actively deter the effects of a psychiatric disorder if tested positive for being at risk of transmission. Over two thirds of study participants also reported that they felt that they lacked sufficient knowledge about genetic testing.

To examine concerns about the effect of genetic risk information regarding psychiatric illness specifically, Peay et al. (2009) interviewed 48 individuals with bipolar disorder and their siblings. Findings suggest that the most frequent coping mechanisms for family vulnerability for bipolar disorder included monitoring for signs of the disorder and cognitive distancing from the idea that family members were more vulnerable to the disorder than other people. Participants expressed that psychological support and education were useful in managing risk information and vulnerability of individuals within the family. Meiser et al. (2005) studied 21 family members with relatives with bipolar disorder and found a majority of individuals were interested in genetic testing. Most family members felt that a genetic explanation would likely decrease social stigma associated with mental illness. Meiser et al. (2008) study of 105 individuals with bipolar disorder or schizoaffective disorder and 95 unaffected family members (family members without psychosis) found that interest in genetic testing was greater in a hypothetical scenario where lifetime risk predictions of the disorder were greater (i.e., 100% risk vs. 25% risk), but more than 75% of individuals reported an interest in genetic testing in either of the two scenarios. Trippitelli et al. (1998) found that a majority of the 45 patients and spouses in the study reported that knowing that they carried a gene for bipolar disorder outweighed the risk of not knowing. Both patients and spouses in the study generally overestimated the risk of an offspring developing bipolar disorder and underestimated successful response to treatment. Similarly, an online survey by Austin et al. (2006) at a schizophrenia informational website showed that 270 individuals who self-identified as having a mental illness or being a relative of someone a loved one with a mental illness possessed inaccurate knowledge about genetic influences in mental illness. A total of 85% of the sample reported positive views of predictive genetic testing.

The Present Study

The present study uses a qualitative approach to examine the knowledge and attitudes about personal mental health genomics in a sample of nine United States military veterans coping with mental illness. A qualitative approach allows for research that is grounded in the world view, language, and context-specific experiences of those studied (Denzin and Lincoln 1994). Although the authors are acutely aware of the interpretation of participants’ experiences that is inherent in qualitative inquiry (see Stein and Mankowski 2004), we have tried to include the words of participants as much as possible to allow adults with mental illness to speak for themselves.

Unlike previous studies, the present research provides an in-depth examination of participants’ knowledge about genetics in mental illness, perceived risks and benefits of genetic testing, and personal preferences about genetic counseling within the same study. The aim of the research is to explore relevant issues in the area of psychiatric genetics within the context of the lived experience of adults with serious mental illness. In contrast to previous research, participants in the present study received a verifiable clinical diagnosis and were active recipients of outpatient services that emphasize self-efficacy and recovery of personal functioning. Documenting the views of mental health consumers about psychiatric genetics within the present model of recovery-oriented services is particularly important if research is to adequately inform current mental health practice.

Methods

Participants

Participants were nine veterans (8 males and 1 female) diagnosed with schizophrenia (44%), schizoaffective disorder (33%), or bipolar I disorder (22%). Research participants were recruited through a larger study of perceptions of personal loss due to mental illness at the Minneapolis VA Medical Center. Individuals were eligible for the research if they were diagnosed with a serious and persistent mental illness and agreed to be interviewed. Demographic information about the nine individuals is found in Table 1. Participants had a mean age of 47 years (SD = 6.4, Range = 35–57) and a mean educational attainment of 14 years (SD = 1.7, Range = 11–16). A majority of the sample was Caucasian (89%), currently unemployed (78%), living independently (56%), and single, never married (56%). All participants were receiving psychotropic medication and all participants were involved in some form of mental health treatment at the Minneapolis VA Medical Center, with a mean length of treatment of about 14 years (M = 170 months; SD = 101.8 months). The names and some identifying characteristics of the research participants have been changed to protect their identities. Oliver, Fred, Henry, and Aaron have all been coping with schizophrenia, Rita, Simon, and Richie have all been coping with schizoaffective disorder, and Jack and Casey have been coping with bipolar disorder.
Table 1

Individual characteristics of study participants

Persona

Age

Education

Diagnosis

Marital status

Annual income

Employment status

Living situation

Number psychiatric hospitalizations

Number of current psychiatric services

Oliver

50–60

College degree

Schizophrenia

Single

30,000–40,000

Unemployed

Independent

6–10

1

Fred

40–50

Some college

Schizophrenia

Single

20,000–30,000

Employed

Semi-independent

>10

2

Henry

30–40

Some college

Schizophrenia

Divorced

40,000–50,000

Unemployed

Independent

2–5

2

Aaron

50–60

College degree

Schizophrenia

Single

10,000–20,000

Employed

Independent

>10

4

Richie

40–50

Some college

Schizoaffective Disorder

Single

30,000–40,000

Unemployed

Semi-independent

1

4

Simon

40–50

Some college

Schizoaffective disorder

Divorced

10,000–20,000

Unemployed

Independent

1

7

Rita

40–50

Some college

Schizoaffective disorder

Widowed

30,000–40,000

Unemployed

Independent

6–10

3

Jack

40–50

High school degree

Bipolar disorder

Divorced

10,000–20,000

Unemployed

Semi-independent

>10

6

Casey

50–60

Some high school

Bipolar disorder

Widowed

<5,000

Unemployed

Independent

2–5

3

aNames have been changed to protect the identities of the participants in this study. Additionally, in accordance with Veterans Health Administration policy only ranges for demographic characteristics are provided in order to minimize the potential that individual participants can be identified

Procedure

The present study received full board approval by the Institutional Review Board at the Minneapolis Veteran’s Affairs Medical Center. After obtaining informed consent from each participant, individual interviews were conducted at the Minneapolis VA Medical Center. The semi-structured interviews were conducted to understand participants’ views in the following three areas: the etiology of their mental illness, knowledge about genes and genomics, and attitudes about genetic testing for mental illness. Interviews contained 25 open-ended questions regarding the nature of genetics, views about use of genetic information, and general attitudes regarding the topic. The first author served as interviewer and used clinical judgment for follow-up questions and prompting as needed. Interviews were audiotaped and lasted, on average, for 1 h. Participants were paid $60 for their participation in the research.

Data Analysis

Data analytic procedures described by Miles and Huberman (1994) guided the present inquiry. Interviews were transcribed verbatim by two of the authors and a research assistant and were checked for accuracy. These verbatim transcripts were used to create an analytic memo for each participant. The purpose of the analytic memo was to maintain the content of the interview, but to reduce the data into a more manageable summary, eliminating its original temporal sequence. The first author summarized the content of the interview transcript for each participant as an analytic memo and compared the content of analytic memos to their original transcripts to insure completeness. After this initial summary and comparison, a second person independently reviewed two randomly selected analytic memos and compared them to their original interview transcripts. Minor changes in the analytic memos were made based on feedback from the second reviewer. Another round of accuracy checks was made in which the first author and second reviewer independently compared all of the analytic memos to their corresponding interview transcripts. The first author made minor changes in particular analytic memos based on feedback provided by the second reviewer. Analytic memos were then aggregated according to the various sections of the interview (e.g., positive aspects of genetic testing for mental illness) and compared across participants by the first author. After the synthesis of interview data was complete, themes were then developed by the first author according to similarities of content across participants, and these themes were reviewed independently for completeness by the second reviewer. Representative quotes were then selected for each theme. There are no known conflicts of interest for any of the authors. Additionally, all authors certify responsibility for this manuscript.

Results

General Knowledge of Genetic Testing

Results showed that all of the veterans interviewed had some general knowledge about genes and genetics, with 33% articulating knowledge of specific genetic concepts (such as chromosomes) and 11% advanced knowledge of genetics (such as heritability factors). In contrast, 44% of participants reported no knowledge about genetic testing. The majority of participants (67%) reported no knowledge about genetic counseling.

Positive and Negative Aspects of Genetic Testing

Within the category of Positive Aspects of Genetic Testing for Serious Mental Illness, two themes emerged: Advances for Medicine (89% of participants) and Understanding and Helping Others (67%). The Advances for Medicine subtheme focused on the idea that current genetic testing for psychiatric conditions could be instrumental in future advances in medicine to treat mental illness. For example, Richie, a man in his mid-40 s, coping with schizoaffective disorder, has an adolescent daughter of whom he has had sole custody since she was in the 3rd grade. When discussing positive aspects of genetic testing for mental illness, Richie explains:

“I think that would help greatly and maybe not right away but knowing family history… genetic testing is done early, they understand what’s going on with the parents, and then they can take the genetic testing to the children and maybe come up with new vaccines or something that could help reduce or eliminate that type of disease in that individual. … It’s probably far out thinking, but, I know that modern science is getting a long way along with genetic testing.”

Aaron, a man in his mid-50s, is highly invested in recovery-oriented services. He highlighted how genetic testing for mental illness could lead to advances in medicine:

“Well, they might be able to develop cures for mental illness through finding out if it’s in your genes, so I think that would be positive. Maybe they could use it to develop certain drugs that are not on the market right now and then they could use these drugs to treat mental illness.”

In addition to views regarding the importance of genetic testing for the advancement of medicine, the theme of Understanding and Helping Others conveyed the idea that genetic testing could facilitate understanding and help others, sometimes members of their own families. For example, Richie described:

“I already have it (serious mental illness), but it might be helpful with understanding what’s going on with my daughter. And then getting proactive, treating her before it gets bad… you know, helping others…and curbing a whole lot of pain.”

Henry is a divorced father of two teenagers. He also discussed the importance of using this information to help his family. As he put it:

“I could talk to my kids about it at an early age…or find a genetic counselor to talk to ‘em at an early age…And, so they could be warned…maybe risky behaviors like drinking and drugging can, kind of spark the mental illness…”

In terms of Negative Aspects of Genetic Testing, two major themes emerged: Discrimination in Various Life Domains (67%) and Disappointing Results (22%). The first theme included a range of participant views about the ways that genetic testing results would foster social discrimination. As Oliver, a man in his mid-50’s explained:

“I think genetic testing is one thing that can be abused, because insurance companies will take some people that are legal outcasts and automatically claim that they are genetically bad risks… presumably there’s too much room for abuse with it, I just think it’s just very ridden with potential scandal and abuse.”

Rita, a woman in her early 40’s, cautions against the use of genetic testing for psychiatric conditions, as it may prevent people from the chance to experience various aspects of life.

According to Rita,

Well, they probably would have never let me join the army. If they had something that had said well this person is going to come down with a mental illness they would have never probably let me join the army, so I wouldn’t have had that opportunity.”

In addition to views regarding how genetic testing could be used against the individual in various life domains, some participants also emphasized how testing results could be personally disappointing, particularly if test results were negative. Simon, who is coping with schizoaffective disorder, and did considerable soul searching to accept his mental illness, put it this way:

“The only thing I can think of that’d be bad is if they don’t have no results. That would be bad… I remember I did some testing and they said it was unconclusive or some kind of word they used…and that was confusing to me…I was like, something should have came out of this.”

Personal Views of Genetic Testing

Personal views of genetic testing for mental illness was an overarching category with three separate content domains: 1) genetic testing as a personal option, 2) potential impact of genetic testing for me, and 3) the role of genetics in understanding my illness. The domain of genetic testing as a personal option contained two themes: a) desire for genetic testing for mental illness and b) how to handle and share results. Reactions to having psychiatric genetic testing were mixed; the majority of participants (67%), expressed a desire for the testing while other participants (22%) reported being undecided about having the testing, and one participant (11%) reported being uninterested in the testing altogether.

In terms of handling and sharing of genetic testing results, 33% of participants reported no preference for how they would like this information delivered to them, while the majority of participants (56%) expressed desire to receive information from a trusted mental health provider. The majority (78%) of individuals reported that they would share their genetic testing results with family and friends.

The domain of potential impact of genetic testing for me was divided into two themes: a) desire for personal genetic information in medical record and b) how results would change life if a genetic reason was found for the participant’s mental illness. All participants reported having no concerns about the incorporation of their mental health genetic testing results in their Veterans Affairs medical record. Moreover, 22% of the participants went on to further describe how this may actually be beneficial for their care, as it may help their doctors to treat them.

Participants were asked whether finding a genetic reason for their mental illness would change their lives in any way. A majority of the participants (56%) reported this would actually improve their lives, while others (33%) indicated it would not change their view of themselves. Casey, a man in his late 50s, expressed interest in having psychiatric genetic testing, describing reduction in blame as an improvement to his life. Casey noted:

“I can say, this really, it’s not my fault I have this disorder. One of my family members had it and it got passed down. …I wouldn’t get so, I wouldn’t get so low, I wouldn’t be so depressed or make myself depressed figuring it is hereditary, good—I couldn’t help it, my dad couldn’t help it. It just got passed down…”

In contrast, Fred, a man diagnosed with schizophrenia, described how the results wouldn’t change how he views himself since it would not be definitive. Fred stated:

“Well…they can tell me the results but…I know…direct genetic influence can’t be any more than 50% at best, so…What I’m saying is no matter what they find there’s still questions in what they find just because of the complex nature of the issue.”

The domain of role of genetics in understanding my illness was divided into two themes: a) the role of genetics in the participant’s mental illness (why I have a mental illness) and b) personal impact if found to have no genes for the participant’s mental illness. Results show that participants have put considerable thought into the etiology of their illness. Most adults (89%), felt genes play at least some role in their mental illness, with a majority (67%) of participants reporting a mixture of genetic and environmental reasons for their disorder, reflecting accuracy in knowledge of the major etiological theories of these types of mental health conditions. It was also noteworthy that a majority (67%) reported they would feel “shocked” or surprised” if they were to find no genetic reason for their mental illness. When discussing how this genetic knowledge would impact their view of themselves or their illness, the majority (67%) of participants reported grappling for understanding. For example, Jack discussed his feelings if his genetic testing results did not find any genes for his mental illness:

“I guess I’d feel surprised… I feel really knowledgeable about my illness…I do a lot of reading.”

Similarly, Richie also noted his feelings:

“That would be, that would be kind of a shock in some ways…Well, I guess it would show how much impact the way I was treated when I was growing up, had to do (with developing the mental illness).”

Discussion

The present study is among the first to examine personal narratives from individuals coping with a mental illness about psychiatric genetic testing. Study participants were committed to mental health treatment and involved in a variety of recovery-oriented services. The nine veterans in the present study had strong views about genetic testing for psychiatric conditions, and generally possessed accurate knowledge about genes and how they might relate to the transmission of mental illness. However, only about one third of the participants had knowledge of the potential use of genetic testing and genetic counseling for mental illness. Although their knowledge about genetic testing was somewhat limited, all participants in the present study demonstrated their ability to thoughtfully discuss the implications of genetic testing for themselves, their families, and society more generally.

Consistent with previous research (Laegsgaard and Mors 2008; Meiser et al. 2005), the majority of participants in this study voiced their interest in having genetic testing for mental illness. Similar to findings of Trippitelli et al. (1998), participants in the present study generally felt that the advantages of undergoing genetic testing outweighed the risks. Unlike previous research, present study participants described both the personal advantages of genetic testing and the potential benefits that genetic testing could have for future advances into the treatment of psychiatric conditions. These individuals were hopeful that they could directly contribute to medical breakthroughs that would help others by undergoing genetic testing.

Informing health services with the individual’s genomic data may enhance the effectiveness of interventions for serious mental illness through personalized treatment that maximizes functional recovery (Nnadi and Malhotra 2007). However, it has been argued that the careless use of genetic information might promote the adoption of health attitudes that are disempowering to consumers and biologically deterministic (Rose 1995). Consistent with previous research (Meiser et al. 2005), individuals coping with serious mental illness in the present study voiced the possibility that a genetic explanation for their illness could likely decrease stigma. Participants of the present study reported that knowing that they carried genes for a psychiatric condition may have an empowering effect, as it could relieve them from self-blame for their illness. Yet, these sentiments also suggest that participants may subscribe to a form of “genetic determinism” in thinking that support for genetic involvement would demonstrate the inevitability of mental illness and thus shield individuals from any self-recriminations.

Consistent with previous research (Austin and Honer 2007), a majority of participants in the present study had never heard of genetic counseling. When asked, participants generally expressed a preference to learn the results of genetic testing from their mental health provider and did not see a problem having results of psychiatric genetic testing be included in their medical records. This poses a challenge as these veterans are requesting a service that their providers may not be properly equipped to fulfill. Moreover, some of the positive aspects that participants associated with genetic testing are not currently within scientific reach. This is potentially problematic, as individuals may have unrealistic expectations about the current usefulness of psychiatric genetic testing.

Study Limitations and Implications for Research and Practice

Although findings from the present study are intriguing, the research is limited in a number of respects. First, this qualitative study focused on a small number of military veterans diagnosed with schizophrenia, schizoaffective disorder or bipolar disorder. Sample size did not permit an analysis of narrative themes about genetic testing as a function of individual characteristics such as participant gender, age, or primary psychiatric diagnosis. Moreover, the sample was recruited from a large Veterans Affairs Medical Center and individuals in the present study had already participated in other studies on mental illness. It is unclear how well findings from this small sample of military veterans would generalize to larger and more diverse samples in public mental health settings. Future research would benefit from the inclusion of a larger, more diverse, and gender balanced samples in a variety of mental health settings to better understand factors that may impact individuals’ views about psychiatric genetic testing.

Despite its limitations, this qualitative study supports and extends previous research on psychiatric genetics from the perspective of individuals coping with a mental illness. Overall, military veterans in the present study had some basic knowledge about genes, were interested in psychiatric genetic testing, and had an awareness of both positive and negative aspects of genetic test results. Participants tended to share a sense of genetic determinism that may reflect popular culture views of human genetics. These veterans tended to have overly optimistic ideas about the current state of the field of psychiatric genetics, and were motivated to undergo genetic testing for the good of their families and to benefit society. Similar to recommendations to mental health providers about psychiatric genetic testing (Douthit 2006; Meiser et al. 2005), present findings speak to the need for current education about psychiatric genetics for individuals coping with mental illness.

For recovery-oriented interventions to incorporate genetic information, and help harness the potential for individualized treatment provided by the genome, health services must be delivered in a manner that accurately portray the role of genetic mechanisms. It is incumbent on researchers and practitioners to help translate the present understanding of psychiatric genetics into both biological and environmental interventions that can truly be tailored to the life circumstances of mental health consumers. Although mental health professionals may be resistant to psychiatric genetic counseling (Hoop et al. 2008), present findings give voice to consumers’ desire to learn more about the potential of this area for the treatment of mental illness. Further research at the genetic level is needed to better understand the implications of genetic testing results for mental illness before these services are readily used in practice. It appears that the practical challenge for our field may not be convincing adults with mental illness about the merits of psychiatric genetics. Rather the challenge for the future may be in creating opportunities and settings that allow professionals in the area of psychiatric genetics and mental health practice to work together for the benefit of individuals and families coping with serious mental illness.

Notes

Acknowledgments

This material is based upon work supported by the Department of Veterans Affairs, Office of Research and Development, Health Services Research and Development grant #DNA 08-127. The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government.

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Copyright information

© Springer Science+Business Media, LLC (Outside the USA) 2011

Authors and Affiliations

  • Danielle N. Potokar
    • 1
  • Catherine H. Stein
    • 2
  • Olivia A. Darrah
    • 1
  • Brent C. Taylor
    • 1
    • 3
    • 4
    • 5
  • Scott R. Sponheim
    • 1
    • 6
    • 7
  1. 1.Minneapolis VA Medical Center (116B)MinneapolisUSA
  2. 2.Bowling Green State UniversityBowling GreenUSA
  3. 3.Center for Chronic Disease Outcomes ResearchMinneapolisUSA
  4. 4.Department of MedicineUniversity of MinnesotaMinneapolisUSA
  5. 5.Division of Epidemiology and Community HealthUniversity of MinnesotaMinneapolisUSA
  6. 6.Department of PsychiatryUniversity of Minnesota Medical SchoolMinneapolisUSA
  7. 7.Department of PsychologyUniversity of MinnesotaMinneapolisUSA

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