The Genomic Era and Serious Mental Illness: A Potential Application for Psychiatric Genetic Counseling
In early 2006 Psychiatric Services published a fascinating and timely article on an important and underresearched topic—the potential implications of the genetics revolution for psychiatry ( 1 ). Phelan and colleagues used data from vignettes administered in a survey of a nationally representative sample to address the hypothesis that people would be more likely to seek help for serious mental illness if they attributed its cause to biomedical (or genetic) factors. Interestingly, the authors found that genetic attributions led to more recommendations for hospitalization or pharmacological intervention but not to more recommendations for treatment by a psychiatrist, therapist, or family doctor. The authors suggested that this finding may have resulted from the perception that illnesses with genetic causes are more serious or chronic.
In addition, genetic attributions were found to correlate with pessimism regarding the effectiveness of treatments. A logical extrapolation from this finding is that genetic attributions may decrease hope of recovery from illness and may be a manifestation of genetic reductionism—a fallacy suggesting that all characteristics of an individual are predetermined by the genome. The correlation with pessimism becomes particularly worrying in the light of another small recent survey that found that more than 56% of 48 family members of individuals with schizophrenia thought that the cause of the illness could be attributed to genetics alone ( 2 ).
Another recent study explored causal attributions for bipolar disorder and the impact of these attributions on the perceived stigma of bipolar disorder among individuals whose families had a high density of the illness ( 3 ). Study participants felt that genetic attributions would decrease the stigma associated with bipolar disorder as a result of "moving the locus of control and responsibility away from the individual towards the role of heredity." However, another recent study found that biogenetic causal attributions for mental disorders led to a desire for increased social distance ( 4 ).
Taken together, these data suggest that genetic attributions for serious mental illnesses could have a multitude of potential consequences—both positive and negative—for help-seeking behaviors, as well as for perceptions of stigma and guilt ( 5 ). In light of the finding that many family members attribute the cause of mental illness to genetic influences alone and recent evidence of the benefits and harms of these attributions, it seems increasingly important to develop an intervention to provide individuals and their families with current information about factors (both genetic and environmental) that contribute to the pathogenesis of serious mental illness. Furthermore, it also seems important to provide a supportive forum for patients and families to discuss the psychosocial impact of this information and its practical consequences. The aim of such an intervention would be to promote adoption of health-enhancing behaviors, such as seeking help, and adaptation to illness or to the risk of illness. Counseling might reduce perceived stigma and guilt. Indeed, the content and goals of such an intervention are also those of genetic counseling ( 6 ).
In this article we discuss the concept of genetic counseling, review the content of a genetic counseling session, and provide examples of groups of individuals to whom psychiatric genetic counseling might be offered. Potential outcomes, particularly as they might relate to help-seeking behaviors and stigma, are discussed, along with how this service might be implemented.
What is genetic counseling?
Since the emergence of the phrase "genetic counseling" in the 1940s, when it was described as a "kind of genetic social-work without eugenic connotations" ( 7 ), the practice has been variously described ( 8 ), but the most up-to-date description was devised by the National Society of Genetic Counselors in 2006 ( 9 ): "Genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. This process integrates the following: interpretation of family and medical histories to assess the chance of disease occurrence or recurrence; education about inheritance, testing, management, prevention, resources and research; counseling to promote informed choices and adaptation to the risk or condition."
The last component of the definition seeks to describe the underlying ethos of genetic counseling. The profession strives to promote the decision-making autonomy of individuals who receive counseling—often called "non-directiveness;" these objectives are discussed in detail elsewhere ( 10 ). Furthermore, it is important to note that this definition in no way excludes discussion of environmental contributors and does not focus solely on genetic testing. Although genetic testing is often preceded by genetic counseling, not all genetic counseling is concerned with genetic tests. Such an intervention may be helpful to individuals affected by serious mental illness and their families.
Process and content of psychiatric genetic counseling
The process of a psychiatric genetic counseling is dynamic. The components outlined below do not necessarily occur in a linear manner. Components of a genetic counseling session fall into two broad categories: information gathering and information provision (content) and support.
Information gathering
Needs identification. Individuals seek genetic counseling for many reasons. Although providing information on recurrence risks (the risks to relatives of developing the condition) is often regarded as the primary purpose of the intervention, many individuals are fearful and apprehensive about receiving such information, and patients may not wish to hear it. Rather, many patients simply seek an explanation for why the illness developed ( 11 ). In addition, some "unaffected" relatives seek psychiatric genetic counseling out of fear that they may be experiencing emerging psychiatric symptoms. In this situation, involvement of a psychiatrist is essential. Also, in genetic counseling with an affected individual, it is important for the counselor to establish that the individual is currently well enough to be an active participant in the session. If this is not the case, the counselor should discuss the possibility of rescheduling for a time when the individual might be better able to take the most from the session.
Identifying the disease construct. Patients and families invariably devise a construct to explain the occurrence of an illness, particularly in the face of uncertainty. Often these explanations invoke feelings of guilt, and the genetic counseling session is arguably one of the best forums for addressing these issues ( 12 ). Furthermore, without exploration and incorporation of the existing construct into the explanation of the disease, little new understanding is taken away from genetic counseling ( 13 ).
Family history. It is important to obtain a family history relatively early in the session. However, this task is best begun once rapport has been established, which will facilitate openness to questions. Questions address, but are not limited to, the following areas: medications, hospitalizations, birth defects, learning difficulties, substance abuse, and reasons for the deaths of family members. The resulting pedigree has multiple uses. First, it can provide information about medical conditions in the family, such as breast cancer, which allows referrals to be discussed and made as appropriate. Second, it can be used to gather information that may indicate the presence of a genetic syndrome underlying the mental illness ( 14, 15, 16, 17, 18, 19 ). For example, it may indicate 22q11.2 deletion syndrome, or 22qDS. Approximately 25% of individuals with 22qDS develop a psychotic disorder, and the condition is estimated to affect up to 2% of individuals with schizophrenia ( 20, 21 ); it is also likely to be underdiagnosed ( 20 ). Evidence of a genetic syndrome may indicate referral to a medical genetics program for complete assessment.
Third, the pedigree can be used as an aid to explanations. Fourth, it can help in risk assessment. Factors influencing risk include the number of affected individuals in a family, their relationships to the individual of concern, and specific psychiatric diagnoses. Thus, whenever possible, diagnoses within the family should be confirmed by seeking consent and requesting medical reports and by involving a psychiatrist. In early psychosis a specific diagnosis may be unclear for a considerable time, and although risk assessment is possible for family members of individuals who have recently developed psychosis, the provision of accurate figures is to some degree diagnosis dependent. Thus the counselor should explain that a more specific risk assessment may be possible once the disorder has been more clearly defined diagnostically.
Information provision and support
Etiology. The bulk of a genetic counseling session involves a discussion with the patient about the importance of contributions of both genetic and environmental vulnerability factors in disease pathogenesis. Discussion of only one of these contributors not only may be overly simplistic but also may lead to undesired consequences, such as increased stigma ( 5, 22, 23 ). The counselor should take care to explain in lay language, using pictorial aids when possible, current knowledge about the pathogenesis of the disorder, ongoing research that will help clarify pathogenesis further, issues surrounding the potential for genetic testing for psychiatric disorders in the future, and why testing is not currently clinically available.
Research demonstrates that observed patterns of inheritance of serious mental illnesses are best described by theoretical models involving interactions of about three different genes with the environment ( 24 ). Many researchers now agree, however, that a quantitative trait model can probably be applied to psychotic disorders, in that when a certain number of genetic vulnerabilities have accumulated, the likelihood of developing the illness becomes very high. It seems likely that there is a large group of genes of which numerous smaller subgroups can interact together and with the environment to substantially increase an individual's vulnerability to serious mental illness. Thus different affected individuals may have different combinations of predisposing factors. Several recently identified genes have even been deemed worthy of the label "schizophrenia genes" ( 25 ).
However, the picture is far from complete. For example, each of the genes identified confers only a modest degree of vulnerability to mental illness, with risk associated with the presence of a genetic variation approximately double the risk in the general population (about 2% compared with about 1%). Furthermore, it is not known how the interaction of different genes influences vulnerability, and because of the significant role of the environment, no genetic test will be able to absolutely predict who will and who will not develop the illness. These caveats effectively negate any current clinical relevance of testing for these genes. Also, even though these genes have been identified, the specific genetic mutations responsible for pathogenesis remain elusive, and the significance and mechanism of these genes in conferring susceptibility remain to be established ( 25, 26 ). Furthermore, although there is now a small handful of genes that appear to confer increased vulnerability to schizophrenia, it seems likely that many more genes that also have this capacity have not yet been identified.
The existing disease construct is incorporated into the discussion of what is known about the etiology of serious mental illness, and misconceptions are clarified. The counselor should take special care to explore the individual's conceptualization of seriousness and chronicity of the illness in light of the information he or she is provided about etiology so that any feelings of fatalism or hopelessness can be addressed. The counselor can refer to the family history, and if the illness is present, the individual's feelings about it should be explored. A full discussion of environmental vulnerability factors often leads to questions about various life events—the individual may ask whether he or she, or others, could have contributed to the vulnerability. Again, exploration of emotions surrounding these issues is critical. It is important to discuss feelings about the lack of certainty in the information provided, because much remains unknown.
Recurrence risks. As noted above, recurrence risks are a source of much anxiety for many families affected by serious mental illness. Before providing estimates of risk, the counselor should carefully explore whether the patient wants to know about recurrence risks. If possible, the counselor should attempt to ascertain the patient's perception of risk before providing estimates of risk. Risks are usually provided in the form of ranges. The information must be accompanied by appropriate provisos, including the limitations of recurrence risk estimates based on empirical data and diagnostic uncertainty. The counselor should use different techniques to convey concepts of chance and risk—for example, by providing an estimate of the chance that an individual will be affected as well as an estimate that the individual will not be affected or by using percentages along with information about chances, presented as "1 in X chance." It is important to take time to discuss the impact of this information on the patient.
Decision-making support. In some scenarios, patients may have decisions to make—for example, about treatment and medication in preparation for or during pregnancy. In this situation, the counselor's role is to facilitate and support decision making, not to direct decisions, and to help the patient to adjust to his or her decisions.
Who should be referred?
A diverse group of individuals can reasonably be offered, and may benefit from, psychiatric genetic counseling. Although few studies have addressed the perceived need for genetic counseling for psychiatric disorders, one showed that among 31 individuals with bipolar disorder who were surveyed, more than 75% reported that they would like to be referred for genetic counseling ( 27 ), and another survey of 48 family members of individuals with schizophrenia showed that more than 70% would have liked to be referred for genetic counseling ( 2 ). Four groups are discussed below: affected individuals and their partners who wish to plan families, affected individuals who maintain high-risk behaviors, siblings of affected individuals, and parents of affected individuals.
Affected individuals and partners planning families
Affected individuals and their partners who are planning to have children are the most obvious potential candidates for psychiatric genetic counseling. In fact, the American Psychiatric Association's guidelines for the treatment of bipolar disorder state that genetic counseling may be helpful for patients who are considering having children. This counseling, however, occurs in a challenging ethical context ( 28 ). The couple will often have questions about the chances of the child's becoming affected and the effects of medication on the developing fetus ( 29 ). Counseling should address these issues and others, including the effects of pregnancy on the affected parent's mental health, the risks to the fetus ( 30 ), and the importance of social support networks and emergency planning for crises. In the session the counselor should discuss the importance of thoughtful planning of treatment choices with a psychiatrist before embarking on a pregnancy.
Genetic counseling can offer patients an opportunity to fully explore their feelings about the issue of pregnancy in a uniquely safe, supportive environment, in which choices will not be dictated but information will be provided and the decision-making process facilitated ( 31 ). This safe environment and the education received can also be of great value to the partner of the affected individual, whose perceptions of the illness and the risks involved may be very different from those of the affected partner.
Affected individuals who maintain risk-behaviors
Substantial proportions of individuals with serious mental illness do not take their prescribed medications or have comorbid substance abuse issues. Exploration of reasons for nonadherence and for substance abuse can sometimes expose underlying fatalistic beliefs about the illness ( 32 ); individuals may believe that current actions have no impact on their illness. Such beliefs reflect the conclusions reached by Phelan and colleagues ( 1 ) that people who attribute the cause of illness to genetic factors may view the disorder as more serious or chronic. These beliefs correlate with increased risk behaviors, such as smoking, in a population at greater risk of heart disease ( 33 ) and may affect decisions about behavior among persons with serious mental illness. Education about genetic vulnerability—rather that causation—has been successfully used to facilitate positive behavior change in some populations ( 34, 35 ).
Because a causal explanation is important in developing coping strategies, facilitating adaptation to illness ( 36 ), and making behavioral decisions ( 37 ), genetic counseling may provide some balance and perspective for the affected individual. Supportive counseling strategies and complex-disorder models can be used to empower the patient and increase his or her perceived personal control over the illness, which can help to promote health-enhancing behaviors ( 37, 38, 39, 40, 41 ). In light of increasing evidence of particular gene-environment interactions—including variations in the gene encoding catechol-O-methyltransferase (COMT) that account for a substantial increase in the risk of psychosis when individuals with these variations use cannabis ( 42 )—specific environmental risk reduction strategies can be discussed. Understanding that in a majority of cases of mental illness both genetic and environmental factors contribute to disease pathogenesis may help relieve the fatalistic attitude of the individual who feels that the illness was predetermined ( 41 ) and may provide a source of hope, empowerment, and an increased sense of personal control ( 40 ), which may ultimately improve self-esteem ( 43 ) and the effectiveness of coping strategies ( 44 ).
Siblings of affected individuals
Siblings have a unique bond within a family, which is long lasting and strengthened by a shared genetic, cultural, and social heritage ( 45, 46 ). Siblings are arguably the family members who receive the least support when a family is touched by serious mental illness, and little research has been conducted with this group ( 46, 47, 48 ). Siblings often experience guilt feelings for having been unable to prevent the illness of their sibling ( 46, 49 ) and may also experience "survivor guilt" ( 46, 50 ). Genetic counseling is an ideal setting to address and attempt to restructure these guilt feelings. Siblings' feelings of guilt can be compounded by complex combinations of shame, grief, anger, envy, sorrow, stigma, fear of developing the illness themselves, and fear of "passing on" the illness to their children ( 45, 46 ). Preliminary data from a study of 116 unaffected relatives of individuals with psychosis (including siblings) showed that approximately a quarter chose to have fewer or no children as a result of their relative's illness ( 51 ). Many of these unaffected relatives overestimated the recurrence risks and had not received genetic counseling. In addition, siblings have reported a need for education about serious mental illnesses ( 45, 52 ).
Parents of affected individuals
Almost invariably, the first reaction of a parent to the first episode of a child's serious mental illness is "What did I do [or not do] to have caused this?" ( 43 ). Guilt is compounded by a lack of other available explanations for the development of the illness and can lead to conflict and blame between parents and even to disintegration of the family ( 53 ).
Without a detailed explanation of current knowledge about factors contributing to serious mental illness, simple reassurance is likely to have a minimal impact. Genetic counseling can offer parents the opportunity to express their feelings of guilt and blame and can provide a framework for restructuring these feelings on the basis of a better understanding ( 12 ). By reducing guilt, genetic counseling can improve parents' coping ability ( 54 ), decrease perceived burden ( 55, 56 ), and decrease within-family blame-based conflict.
Although genetic counseling may decrease parents' guilt, it may also have the opposite effect: for example, it may induce guilt about transmission of "faulty genes." Awareness of these issues and use of supportive counseling strategies will promote the positive impact of genetic counseling.
Populations involved in psychiatric research
It is important to note that some psychiatric research, in particular in the field of early intervention in psychosis, already embraces the concept and implications of genetic risk. After the "at-risk mental state" was described ( 57 ), further work that was aimed at increasing the power to predict psychosis led to the operational definition of three groups of individuals deemed to be at substantially increased risk of developing psychosis within a short time; individuals in these groups are said to be at "ultra-high risk" or "prodromal" ( 58 ). The inclusion criteria for one of the three ultra-high-risk groups include an affected first-degree relative and a recent lowered mood or nonspecific anxiety ( 58 ). Ultra-high-risk individuals, including those who meet the conditions involving genetic risk, are the subject of considerable important research aimed at developing strategies to prevent psychosis, but concerns have also been raised about the potential psychosocial risks associated with being "at risk" ( 59 ). In this context, the potential outcomes of psychiatric genetic counseling discussed above may be particularly pertinent.
What outcomes might be expected?
Psychiatric genetic counseling may have a significant impact on families affected by serious mental illness. Aims of such counseling include facilitating accurate and useful risk perception, assisting adaptation to the illness (or to the risk of the illness) in oneself or a loved one, and promoting health-enhancing behaviors ( 6 ). Expected outcomes vary according to each unique presenting situation but may include decreasing fear, stigma, and guilt associated with a diagnosis of a psychiatric illness; improving adherence to prescribed medications and decreasing risk behaviors, such as illicit drug use; and correcting misconceptions about the disease ( 60 ). These potential outcomes are described below.
Guilt
As noted above, one of the most prominent experiences of affected individuals, their siblings, and parents in response to emergence of a serious mental illness is guilt, and genetic counseling can have a positive impact in this area. Outcome measures of genetic counseling have not included its impact on guilt, although we are currently conducting such a study.
Stigma
Families touched by mental illness are arguably the group most profoundly affected by disease-associated stigma ( 43, 61, 62, 63 ); a discussion of the definition of stigma can be found elsewhere ( 64 ). Stigma has a negative impact on the affected individual and his or her family ( 65 ). So-called associative stigma, whereby an individual is stigmatized because of his or her association with an already stigmatized person, is a serious problem in its own right ( 63 ). Family members may be blamed for causing their loved one's illness, they may have their own mental health questioned, or they may be rejected by friends ( 5, 43 ). Stigmatization leads to increased withdrawal, isolation, and sense of burden; to exacerbation of medical conditions ( 66, 67 ); and to decreased social network size, emotional support, and quality of life. The stigma felt by the family also has an impact on the affected individual: stigmatized families are less likely to detect early signs of relapse and to seek or accept treatment ( 68 ).
A detailed explanation of current knowledge about genetic and environmental contributors may help demystify serious mental illness and lessen the fears of affected individuals. As noted, one recent study found that family members of individuals with bipolar disorder felt that attributing the cause of the illness to genetics would reduce disease-associated stigma ( 3 ). Some studies have shown that attribution of mental illness to sources such as genes, stress, or circumstance (rather than "bad character") leads to less social avoidance ( 43, 69, 70 ) and may reduce discrimination against affected individuals and families and decrease stigma. Other studies however, have yielded different findings ( 4 ), indicating that the less simplistic, more inclusive approach of attributing mental illness to both genetic and environmental factors may be most helpful ( 5 ). Educating affected families and enabling them to share their new knowledge with friends and relatives can reduce the negative impact of stigma or the stigma experienced.
Some have suggested that emphasis on biological etiologies may increase within-family stigma by leading parents to regard their affected children as "defective" ( 5 ). If this perception is shared by society, a stigma-increasing "us versus them" mentality may result ( 5 ). Another potential negative consequence is a more deterministic view of mental illness, which may result in decreased hope for recovery and undervaluation of the importance of environmental modifications ( 71 ); for example, a family member may believe, "There is nothing that we could have done. He is genetically programmed to have mental illness" ( 71, 72, 73 ). Such a belief may reduce help-seeking behavior. For these reasons, it is crucial that individuals who provide psychiatric genetic counseling are aware of potential harms and that, using supportive counseling strategies, they spend sufficient time with patients to help ensure a positive impact.
Genetic counseling and adaptation to illness
An understanding of the nature of one's illness, including an understanding of its causes, is important to how one responds behaviorally ( 36, 37, 44 ). The specialized nature of genetic counseling means that it can offer detailed and sophisticated information about the causes of serious mental illness, which may satisfy the attributional search embarked upon by families. An understanding of how an illness reoccurs is also important in developing coping strategies and behaviors. Discussion in the counseling session of environmental contributions to serious mental illness, such as use of street drugs and stress, over which the individual can exert various degrees of control can be important in achieving a sense of personal control. Thus genetic counseling can have a significant impact on the adaptation and coping processes. There is currently a need for well-designed research studies to investigate some of these concepts.
How to best provide psychiatric genetic counseling?
Genetic counseling has evolved as a specialist profession of its own; the first master's-level, specialist genetic counseling training program was founded in 1969. These programs provide training in the delivery of genetic information, counseling techniques and interventions, and ethical, practical, and psychosocial aspects and considerations that are often unique to genetic information. Since the birth of the profession, genetic counseling has matured into an established service commonly affiliated with pediatric or prenatal settings that provides services to families affected by disorders caused by chromosomal abnormalities, single genes, or more recently, complex disorders for which genetic testing is available. Genetic counseling can usefully be applied to complex disorders such as serious mental illness. Indeed, the literature on genetic counseling in psychiatry spans more than 40 years ( 11, 60, 74, 75, 76, 77, 78, 79 ). However, these individuals and their families are not routinely referred to genetic counselors. Further, although the process of genetic counseling for psychiatric disorders is not substantially different from that of genetic counseling for other complex disorders, a survey of 41 practicing genetic counselors found that overall they did not feel well prepared to provide services for psychiatric disorders, largely as a result of lack of familiarity with the illnesses ( 80 ).
Aside from exposing master's-level genetic counseling students to training in psychiatric genetic counseling (in the same way that students are exposed to specialist genetic counseling for hereditary cancer), one way of circumventing this problem would be for other health care professionals, such as psychiatrists, to provide psychiatric genetic counseling. However, a recent survey of psychiatrists indicated a lack of familiarity with concepts related to medical and psychiatric genetics that are of substantial relevance to psychiatric genetic counseling ( 81 ). Furthermore, although one of the central tenets of genetic counseling involves nondirective counseling ( 10 ), psychiatrists, like other medical professionals who have been surveyed, reported that they would counsel in a "directive" manner, that is, in favor of continuation or termination of pregnancy ( 81 ).
A logical solution to the problem would be to adopt a multidisciplinary approach and involve both psychiatrists and genetic counselors in a collaborative effort to provide comprehensive psychiatric genetic counseling, with each professional contributing his or her unique expertise ( 79 ). This would mirror the environment in which most genetic counselors are already established—typically, in multidisciplinary health care team settings, where they work closely with physicians of different disciplines, including obstetricians, pediatricians, and oncologists.
Genetic counseling typically adopts a family-based approach, which makes it compatible with—and complementary to—existing intervention paradigms for serious mental illness ( 68, 82 ). Several psychosocial interventions are efficacious in serious mental illness, and data supporting the efficacy of family psychoeducation are particularly compelling ( 83 ). Although this intervention usually includes some information about factors contributing to the condition affecting the family ( 84 ), such information is not typically the primary focus ( 85 ). Thus psychiatric genetic counseling would complement existing services.
Discussion
In a review article in the American Journal of Psychiatry in 2003, Merikangas and Risch ( 86 ) asked, "Will the genomics revolution revolutionize psychiatry?" The authors identified a "chasm between genetic information and clinical utility"—a chasm that could begin to be bridged by psychiatric genetic counseling. Three years later, although the genomics revolution may be having an impact on the public's causal attributions in regard to serious mental illness ( 1 ), it has yet to have any major impact on the clinical practice of psychiatric health care.
Despite the applicability of genetic counseling for mental illnesses, and the apparent demand, relatively few individuals currently receive this service. There are a number of possible explanations. Perhaps genetic counseling is perceived as being useful exclusively in the arena of prenatal testing and diagnosis and for Mendelian genetic conditions ( 87 ). Alternatively, the significant genetic contribution to mental illnesses may still be underrecognized in the clinical community ( 88 ) and the relevance of genetic counseling not appreciated. Or perhaps as noted above, there is a degree of uncertainty among psychiatrists and genetic counselors regarding who may be best placed to provide the service or how a collaborative approach might be adopted.
However, continuing advances in genetic research on major mental illness are likely to translate into increased public awareness, which in turn may lead to greater interest in psychiatric genetic counseling. In addition, targeted clinical vulnerability testing or more effective, genotype-specific treatments based on endophenotypes or knowledge of gene-environment interactions may become available in the future, and it seems prudent to have the appropriate genetic counseling infrastructure in place. As has been found in other illnesses ( 89 ), it is possible (perhaps likely) that some genetic variations may both influence the risk of psychiatric illness and have pharmacogenomic implications, which would necessitate the collaborative involvement in the testing process of both genetic counselor and psychiatrist.
Individuals affected by serious mental illness and their family members often have a poor understanding of the factors contributing to mental illness ( 90 ), and among those surveyed recently, large proportions report an interest in receiving genetic counseling ( 2, 27 ). Thus a demand for this service already exists. In light of continuing advances in psychiatric genetic research and the growing interest of families, the National Society of Genetic Counselors has recently established a working group that aims to develop practice guidelines for delivering psychiatric genetic counseling.
Another reason for establishing a strategy for delivering psychiatric genetic counseling is the emerging issue of direct-to-consumer genetic testing. The number of genetic tests that can be ordered on the Internet is increasing daily. This industry is, at present, poorly regulated, but it is strongly opposed by the board of directors of the American College of Medical Genetics ( 91 ). Some Web sites are promising the imminent availability of vulnerability testing and diagnostic testing for psychiatric conditions, including depression, schizophrenia, bipolar disorder, and Alzheimer's disease ( 92, 93, 94 ). In addition to inappropriate use of genetic tests—both scientifically and ethically—there is enormous potential for misinterpretation of information, with potentially very damaging consequences; in addition, often there is little provision of follow-up care by the testing organizations. The advent of direct-to-consumer genetic testing is arguably one of the most compelling reasons for psychiatry to consider how best to implement genetic counseling services as soon as possible.
Conclusions
In this review we have attempted to describe some of the ways in which psychiatric genetic counseling might be used to exert a positive influence on help-seeking behavior and other health-enhancing behaviors, as well as on stigma and guilt, even if advances in genetic research do not lead to targeted clinical vulnerability testing or genotype-specific interventions. In addition, we support multidisciplinary collaboration between psychiatrists and genetic counselors as a model for providing this service. The creation of collaborations to deliver this potentially important service will provide psychiatric health care with the opportunity to be a leader in knowledge translation from research to clinical practice and in promoting the use of genetic counseling for individuals affected by complex disorders.
Acknowledgments and disclosures
Support was provided by grant NET-54013 from the Canadian Institutes of Health Research and by the Michael Smith Foundation for Health Research and the British Columbia Mental Health and Addictions Services. The authors thank Bill MacEwan, F.R.C.P.C., for his support.
The authors report no competing interests.
Footnote
The authors are affiliated with the Department of Psychiatry, University of British Columbia, 203-828 West 10th Ave., Vancouver, British Columbia, Canada V5Z 1L8(e-mail: [email protected]).
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