Publications by authors named "Jehannine C Austin"

29 Publications

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Genetic counselling for the prevention of mental health consequences of cannabis use: A randomized controlled trial-within-cohort.

Early Interv Psychiatry 2020 Nov 26. Epub 2020 Nov 26.

Department of Psychiatry, University of British Columbia, Vancouver, British Columbia, Canada.

Background: Cannabis use is a risk factor for severe mental illness. However, cannabis does not affect everyone equally. Genetic information may help identify individuals who are more vulnerable to the harmful effects of cannabis on mental health. A common genetic variant within the AKT1 gene selectively increases risk of psychosis, only among those who use cannabis. Therapeutically oriented genetic counselling may enable us to reduce cannabis exposure among genetically sensitive individuals.

Methods: Using a trial-within-cohort design, we aim to test if genetic counselling, including the option to receive AKT1 rs2494732 genotype, reduces cannabis use. To this end, we have designed a genetic counselling intervention: Interdisciplinary approach to Maximize Adolescent potential: Genetic counselling Intervention to reduce Negative Environmental effects (IMAGINE).

Results: IMAGINE will be implemented in a cohort of children and youth enriched for familial risk for major mood and psychotic disorders. Approximately 110 eligible individuals aged 12-21 years will be randomized in a 1:1 ratio to be offered a single genetic counselling session with a board-certified genetic counsellor, or not. Allocated youth will also be invited to attend a follow-up session approximately 1 month following the intervention. The primary outcome will be cannabis use (measured by self-report or urine screen) at subsequent annual assessments as part of the larger cohort study. Secondary outcomes include intervention acceptability and psychopathology.

Conclusion: This study represents the first translational application of a gene-environment interaction to improve mental health and test an intervention with potential public health benefits. This study is registered with clinicaltrials.gov (NCT03601026).
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http://dx.doi.org/10.1111/eip.13082DOI Listing
November 2020

Advancing the genetic counseling profession through research: Identification of priorities by the National Society of Genetic Counselors research task force.

J Genet Couns 2020 12 23;29(6):884-887. Epub 2020 Sep 23.

Concert Genetics, Nashville, Tennessee, USA.

To help advance research critical to the achievement of the National Society of Genetic Counselors' (NSGC) strategic objectives, coordination and prioritization of society resources are needed. NSGC convened a task force to advance research necessary for the achievement of our strategic objectives by reviewing existing society-supported research efforts identifying gaps in current research, and coordinating society resources, the task force was formed in order to coordinate and prioritize society resources to advance research critical to the achievement of our strategic objectives. The task force developed a research agenda outlining high-priority research questions for the next 5 years. The questions are organized into four domains: (a) Genetic Counseling Clients; (b) Genetic Counseling Process and Outcomes; (c) Value of Genetic Counseling Services; and (d) Access to Genetic Counseling Services. This framework can be used to advocate for research and funding priorities within NSGC and with other key research entities to stimulate the growth and advancement of the genetic counseling profession.
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http://dx.doi.org/10.1002/jgc4.1330DOI Listing
December 2020

Evidence-Based Genetic Counseling for Psychiatric Disorders: A Road Map.

Cold Spring Harb Perspect Med 2020 06 1;10(6). Epub 2020 Jun 1.

Departments of Psychiatry and Medical Genetics, University of British Columbia, Vancouver, British Columbia V5Z 4H4, Canada.

Psychiatric disorders, such as schizophrenia, depression, anxiety, and bipolar disorder, are common conditions that arise as a result of complex and heterogeneous combinations of genetic and environmental factors. In contrast to childhood neurodevelopmental conditions such as autism and intellectual disability, there are no clinical practice guidelines for applying genetic testing in the context of these conditions. But genetic counseling and genetic testing are not synonymous, and people who live with psychiatric disorders and their family members are often interested in what psychiatric genetic counseling can offer. Further, research shows that it can improve outcomes like empowerment for this population. Despite this, psychiatric genetic counseling is not yet routinely or widely offered. This review describes the state of the evidence about the process and outcomes of psychiatric genetic counseling, focusing on its clinical implications and remaining research gaps.
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http://dx.doi.org/10.1101/cshperspect.a036608DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7263094PMC
June 2020

Psychiatric genetic counseling: A mapping exercise.

Am J Med Genet B Neuropsychiatr Genet 2019 12 20;180(8):523-532. Epub 2019 Jun 20.

Department of Psychiatry, University of British Columbia, Vancouver, British Columbia, Canada.

Psychiatric genetic counseling (PGC) is gradually developing globally, with countries in various stages of development. In some, PGC is established as a service or as part of research projects while in others, it is just emerging as a concept. In this article, we describe the current global landscape of this genetic counseling specialty and this field's professional development. Drawing on information provided by expert representatives from 16 countries, we highlight the following: (a) current understanding of PGC; (b) availability of services for patients; (c) availability of training; (d) healthcare system disparities and cultural differences impacting practice; and (e) anticipated challenges going forward.
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http://dx.doi.org/10.1002/ajmg.b.32735DOI Listing
December 2019

Genetic counseling students' experiences with mental illness during training: An exploratory study.

J Am Coll Health 2019 May-Jun;67(4):348-356. Epub 2018 Oct 25.

b Department of Psychiatry , University of British Columbia , Vancouver , British Columbia , Canada.

Mental illness is a substantive issue for graduate students. We investigated experiences of mental illness during training among genetic counseling students, a subgroup of graduate students for which little data exists on this topic. Genetic counseling students and recent graduates ( = 227) completed an online survey, from who 11 were selected to participate in semi-structured telephone interviews. Thematic analysis and member checking were employed to interpret the interviews. An overarching theme of importance to participants' mental health during genetic counseling training was safety, with subthemes of: trust/confidentiality, stigma and fear of labeling, developing a unique professional identity, and ability to engage in self care strategies. Our data could help genetic counseling training programs develop strategies to support students' mental health.
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http://dx.doi.org/10.1080/07448481.2018.1481076DOI Listing
June 2020

Women's experiences of participating in a prospective, longitudinal postpartum depression study: insights for perinatal mental health researchers.

Arch Womens Ment Health 2017 08 10;20(4):547-559. Epub 2017 Jun 10.

Department of Psychiatry, University of British Columbia, Rm A3-112, 938 W 28th Ave, Vancouver, BC, V5Z 4H4, Canada.

Barriers to recruitment for research on mental illness include participant distrust of researchers and social stigma. Though these issues may be acutely important in perinatal mental health research, they remain unexplored in this context. In order to inform strategies to more fully engage women in perinatal mental health research, we explored the motivations and experiences of women with a history of major depressive disorder who participated in a prospective longitudinal research study on postpartum depression (PPD). Sixteen women with a history of depression who had either completed or recently made a decision about participation in a longitudinal research study about PPD were interviewed by telephone. Qualitative, semi-structured interviews explored participants' decision-making about, and experiences of, participation. Interviews were audio-recorded, transcribed, and qualitatively analyzed using elements of grounded theory methodology. Follow-up interviews were conducted with four participants to refine and clarify preliminary results. Foundational elements necessary for women to consider participating in PPD research included personal acceptance of illness and trust in the research team/institution. Other main motivators included perceived personal relevance, anticipated benefits (including access to support/resources, learning opportunities, and improved self-worth), altruism, and accessible study procedures. Our data suggest that participating in perinatal mental health research may help women make meaning of their mental illness experience and is perceived as providing support. The findings-particularly around the importance of participant-researcher rapport and accessibility of study design-may inform strategies that improve participation rates, decrease attrition, and maximize participant benefits in perinatal mental health research.
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http://dx.doi.org/10.1007/s00737-017-0744-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5511519PMC
August 2017

2013 Review and Update of the Genetic Counseling Practice Based Competencies by a Task Force of the Accreditation Council for Genetic Counseling.

J Genet Couns 2016 10 23;25(5):868-79. Epub 2016 Jun 23.

Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA.

The first practice based competencies (PBCs) for the field of genetic counseling were adopted by the American Board of Genetic Counseling (ABGC), 1996. Since that time, there has been significant growth in established and new work settings (clinical and non-clinical) and changes in service delivery models and the roles of genetic counselors. These changes prompted the ABGC to appoint a PBC Task Force in 2011 to review the PBCs with respect to their current relevance and to revise and update them as necessary. There are four domains in the revised PBCs: (I) Genetics Expertise and Analysis (II) Interpersonal, Psychosocial and Counseling Skills (III) Education and (IV) Professional Development and Practice. There are 22 competencies, each clarified with learning objectives or samples of activities and skills; a glossary is included. New competencies were added that address genomics, genetic testing and genetic counselors' roles in risk assessment, education, supervision, conducting research and presenting research options to patients. With PBCs serving as the pre-defined abilities or outcomes of training, graduating genetic counselors will be well prepared to enter the field with a minimum level of skills and abilities. A description of the Task Force's work, key changes and the 2013 PBCs are presented herein.
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http://dx.doi.org/10.1007/s10897-016-9984-3DOI Listing
October 2016

Ethical issues associated with genetic counseling in the context of adolescent psychiatry.

Appl Transl Genom 2015 Jun 27;5:23-9. Epub 2015 Jun 27.

Department of Psychiatry, University of British Columbia, Vancouver, Canada; Department of Medical Genetics, University of British Columbia, Vancouver, Canada.

Genetic counseling is a well-established healthcare discipline that provides individuals and families with health information about disorders that have a genetic component in a supportive counseling encounter. It has recently been applied in the context of psychiatric disorders (like schizophrenia, bipolar disorder, schizoaffective disorder, obsessive compulsive disorder, depression and anxiety) that typically appear sometime during later childhood through to early adulthood. Psychiatric genetic counseling is emerging as an important service that fills a growing need to reframe understandings of the causes of mental health disorders. In this review, we will define psychiatric genetic counseling, and address important ethical concerns (we will particularly give attention to the principles of autonomy, beneficence, non-maleficence and justice) that must be considered in the context of its application in adolescent psychiatry, whilst integrating evidence regarding patient outcomes from the literature. We discuss the developing capacity and autonomy of adolescents as an essential and dynamic component of genetic counseling provision in this population and discuss how traditional viewpoints regarding beneficence and non-maleficence should be considered in the unique situation of adolescents with, or at risk for, psychiatric conditions. We argue that thoughtful and tailored counseling in this setting can be done in a manner that addresses the important health needs of this population while respecting the core principles of biomedical ethics, including the ethic of care.
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http://dx.doi.org/10.1016/j.atg.2015.06.001DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4745399PMC
June 2015

A pilot randomized clinical trial evaluating the impact of genetic counseling for serious mental illnesses.

J Clin Psychiatry 2016 Feb;77(2):e190-8

University of British Columbia, Department of Psychiatry, Vancouver, Canada.

Objective: The serious mental illnesses schizophrenia, schizoaffective disorder, and bipolar disorder are complex conditions affecting 1% to 4% of the population. Individuals with serious mental illnesses express interest in genetic counseling, an intervention showing promise for increasing patient knowledge and adaptation. This trial aimed to evaluate the effects of genetic counseling for people with serious mental illnesses as compared to an educational intervention or wait list.

Method: A pilot 3-arm (each n = 40; genetic counseling, a control intervention involving an educational booklet, or wait list), parallel-group, randomized clinical trial was conducted from September 2008 through November 2011 in Vancouver, Canada. Participants with schizophrenia, bipolar disorder, or schizoaffective disorder (DSM-IV) completed outcome measures assessing knowledge, risk perception, internalized stigma, and perceived control over illness at baseline and 1-month follow-up. The Brief Symptom Inventory was administered to control for current symptoms. Analyses included linear mixed-effects models and χ(2) tests.

Results: Knowledge increased for genetic counseling/educational booklet compared to wait list at follow-up (LRT1 = 19.33, Holm-adjusted P = .0003, R(2)LMM(m) = 0.17). Risk perception accuracy increased at follow-up for genetic counseling compared to wait list (Yates continuity corrected χ(2)1 = 9.1, Bonferroni P = .003) and educational booklet (Yates continuity corrected χ(2)1 = 8.2, Bonferroni P = .004). There were no significant differences between groups for stigma or perceived control scores.

Conclusions: Genetic counseling and the educational booklet improved knowledge, and genetic counseling, but not the educational booklet, improved risk perception accuracy for this population. The impact of genetic counseling on internalized stigma and perceived control is worth further investigation. Genetic counseling should be considered for patients with serious mental illnesses.

Trial Registration: ClinicalTrials.gov identifier: NCT00713804.
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http://dx.doi.org/10.4088/JCP.14m09710DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4864025PMC
February 2016

Perinatal psychosis in mothers with a history of major depressive disorder.

Arch Womens Ment Health 2016 Apr 11;19(2):253-8. Epub 2015 Aug 11.

Department of Psychiatry, University of British Columbia, Vancouver, Canada.

While women with a history of major depressive disorder (MDD) have higher chances for postpartum depressive and manic episodes, little is known about their chance for postpartum psychosis (PPP). We prospectively assessed the frequency of perinatal psychotic symptoms among primiparous women with a history of MDD only (structured clinical interview was used to exclude women with pre-existing histories of mania or psychosis) and explored whether sex of the baby influenced these symptoms.The presence of symptoms of psychosis was defined using previously established cutoff scores on five key items from the Positive and Negative Syndrome Scale (PANSS), which was administered during pregnancy, at 1 week, 1 month, and 3 months postpartum.Fourteen of 60 women (23%) scored above threshold for psychosis at one or more time points, with 6 experiencing postpartum onset. There was a non-significant trend (p = 0.073) towards higher frequency of these symptoms among mothers of girls.If controlled studies using diagnostic interviews confirm that psychotic symptoms are relatively common among women with MDD, monitoring for psychosis during the perinatal period may be indicated in this population. The potential effect of sex of the baby on mothers' chance for PPP requires further study.
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http://dx.doi.org/10.1007/s00737-015-0561-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4739833PMC
April 2016

Mania and depression in the perinatal period among women with a history of major depressive disorders.

Arch Womens Ment Health 2014 Apr 9;17(2):137-43. Epub 2014 Jan 9.

Department of Medical Genetics, University of British Columbia, Vancouver, Canada.

Women with a history of major depressive disorder (MDD) have increased risks for postpartum depression, but less is known about postpartum mania in this population. The objectives of this study were to prospectively determine the frequency with which mania occurs in the postpartum among women who have a history of MDD and to explore temporal relationships between onset of mania/hypomania and depression. We administered the Structured Clinical Interview for DSM IV disorders (SCID) to pregnant women with a self-reported history of MDD to confirm diagnosis and exclude women with any history of mania/hypomania. Participants completed the Edinburgh Postnatal Depression Scale and Altman Self-Rating Mania Scale (ASRM) once during the pregnancy (∼26 weeks) and 1 week, 1 month, and 3 months postpartum. Among women (n = 107) with a SCID-confirmed diagnosis of MDD, 34.6 % (n = 37) experienced mania/hypomania (defined by an ASRM score of ≥6) at ≥1 time point during the postpartum, and for just over half (20/37, 54 %), onset was during the postpartum. The highest frequency of mania/hypomania (26.4 %, n = 26) was at 1 week postpartum. Women who experienced mania/hypomania at 1 week postpartum had significantly more symptoms of mania/hypomania later in the postpartum. A substantive proportion of women with a history of MDD may experience first onset of mania/hypomania symptoms in the early postpartum, others may experience first onset during pregnancy. Taken with other recent data, these findings suggest a possible rationale for screening women with a history of MDD for mania/hypomania during the early postpartum period, but issues with screening instruments are discussed.
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http://dx.doi.org/10.1007/s00737-013-0408-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3961475PMC
April 2014

Awareness of genetic counseling and perceptions of its purpose: a survey of the Canadian public.

J Genet Couns 2013 Dec 21;22(6):762-70. Epub 2013 Aug 21.

Department of Medical Genetics, University of British Columbia, Vancouver, Canada.

Genetic counseling can result in better outcomes when clients understand what to expect, and at least theoretically, at some point in their lifespan, anyone could be referred for or benefit from genetic counseling. Thus, in order to identify (and ultimately address) issues around awareness of genetic counseling and perceptions of its purpose, we surveyed the Canadian general population. We acquired 1,000 telephone numbers corresponding to a demographically representative sample of Canada from Survey Sampling International, and invited individuals to participate in a telephone-based survey. We administered a purpose-designed survey (in either French or English) comprising questions regarding: demographics, whether or not the individual had heard of genetic counseling, and 15 Likert scale-rated (strongly disagree-strongly agree) items about the possible purposes of genetic counseling. Responses to these 15 items were used to generate a total "knowledge score". Of the 1,000 numbers, n = 372 could not be reached, and the survey was successfully administered to n = 188 individuals (response rate 30 %). Most respondents (n = 129, 69 %) had not heard of genetic counseling, and substantial proportions thought that genetic counseling aims to prevent genetic diseases and abnormalities, help couples have children with desirable characteristics, and help people to understand their ancestry. These data could be used to inform the strategy for development of future awareness efforts, and as a baseline from which to measure their effects.
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http://dx.doi.org/10.1007/s10897-013-9633-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3825692PMC
December 2013

"Nothing is absolute in life": understanding uncertainty in the context of psychiatric genetic counseling from the perspective of those with serious mental illness.

J Genet Couns 2013 Oct 21;22(5):625-32. Epub 2013 Apr 21.

Department of Psychiatry, University of British Columbia, Vancouver, BC, Canada,

No genetic tests are currently clinically available for serious mental illnesses such as schizophrenia and bipolar disorder. Rather, the full spectrum of genetic variants that confer susceptibility remain unknown, and estimates of probability of condition recurrence typically have the form of ranges rather than single absolute numbers. Genetic counselors have been shown to feel that the information that can be provided for patients with serious mental illness could be more confusing than helpful. However, how those with serious mental illness perceive this uncertainty remains unknown. So, to investigate this, individuals with serious mental illness participated in a psychiatric genetic counseling (GC) session and responded to a single open ended question about their reactions towards the uncertainty that they encountered in their GC session immediately and one month post-counseling (from which themes were identified), and completed the Genetic Counseling Satisfaction Scale immediately post-session (descriptive statistics applied). While some of the 37 participants were disappointed with the uncertainty, twice as many were unconcerned. Overall, responses from immediately and one month after GC were very similar; participants were very satisfied with, and found value in GC despite uncertainty, and four approaches to coping with uncertainty emerged. Ultimately, these findings offer insight into providing GC for those with serious mental illness, and potentially could be applied to other areas of GC where uncertainty lies, with downstream impact on GC practice and future research.
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http://dx.doi.org/10.1007/s10897-013-9594-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3776779PMC
October 2013

Descriptive and numeric estimation of risk for psychotic disorders among affected individuals and relatives: implications for clinical practice.

Psychiatry Res 2012 Mar 14;196(1):52-6. Epub 2012 Mar 14.

Department of Psychiatry, University of British Columbia, Vancouver, BC, Canada.

Studies show that individuals with psychotic illnesses and their families want information about psychosis risks for other relatives. However, deriving accurate numeric probabilities for psychosis risk is challenging, and people have difficulty interpreting probabilistic information; thus, some have suggested that clinicians should use risk descriptors, such as "moderate" or "quite high", rather than numbers. Little is known about how individuals with psychosis and their family members use quantitative and qualitative descriptors of risk in the specific context of chance for an individual to develop psychosis. We explored numeric and descriptive estimations of psychosis risk among individuals with psychotic disorders and unaffected first-degree relatives. In an online survey, respondents numerically and descriptively estimated risk for an individual to develop psychosis in scenarios where they had: A) no affected family members; and B) an affected sibling. Participants comprised 219 affected individuals and 211 first-degree relatives participated. Affected individuals estimated significantly higher risks than relatives. Participants attributed all descriptors between "very low" and "very high" to probabilities of 1%, 10%, 25% and 50%+. For a given numeric probability, different risk descriptors were attributed in different scenarios. Clinically, brief interventions around risk (using either probabilities or descriptors alone) are vulnerable to miscommunication and potentially negative consequences-interventions around risk are best suited to in-depth discussion.
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http://dx.doi.org/10.1016/j.psychres.2012.02.005DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3723521PMC
March 2012

Prenatal testing for Down syndrome: the perspectives of parents of individuals with Down syndrome.

Am J Med Genet A 2012 Apr 21;158A(4):743-50. Epub 2012 Feb 21.

Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada.

This exploratory, descriptive study examined the views and opinions of parents of individuals with Down syndrome (DS) related to prenatal testing for DS and the use of age-based criteria to determine eligibility for this testing. This survey-based study was designed in collaboration with parents of individuals with DS and the British Columbia-based Lower Mainland Down Syndrome Society (LMDSS). The survey was a 26-item, self-report questionnaire, which was distributed by the LMDSS. Out of the 246 potentially eligible individuals that were mailed surveys, 101 participants returned their completed surveys. The availability of prenatal screening and diagnostic testing for DS was perceived positively by 55.1% and 64.7% of parents, respectively. More than half (60.2%) of participants felt that prenatal diagnostic testing for DS should be available to all pregnant women, regardless of age. In this study, views of Canadian parents of individuals with DS aligned with the prenatal testing policy recently adopted in the USA (whereby any woman, regardless of age or risk factors, can opt for prenatal diagnostic testing) rather than with new Canadian policy (whereby eligibility for diagnostic testing is no longer offered on the basis of age, but on the basis of other risk factors).
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http://dx.doi.org/10.1002/ajmg.a.35238DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3958964PMC
April 2012

Mothers' perspectives on their child's mental illness as compared to other complex disorders in their family: insights to inform genetic counseling practice.

J Genet Couns 2012 Aug 17;21(4):564-72. Epub 2011 Nov 17.

Masters Program in Genetic Counseling, Boston University School of Medicine, Boston, MA, USA.

To facilitate the development of a therapeutic alliance in genetic counseling, it is important that the counselor understands how families might perceive the condition that constitutes the reason for the referral. Through training and professional practice, genetic counselors develop a thorough understanding of families' perceptions of the conditions that are common indications for genetic counseling. But, for referral indications that are less frequent, like serious mental illnesses, genetic counselors may feel less confident in their understanding of the family's experience, or in their ability to provide psychosocial support when serious mental illness is reported in a family history. This may impede the establishment of a therapeutic alliance. As research shows that most referrals for genetic counseling related to serious mental illness are for female first-degree family members of affected individuals, we sought to explore how this group perceives serious mental illness. To provide a frame of reference with which genetic counselors may be more familiar, we explored how women perceived serious mental illness compared to other common complex disorders in their family. We conducted semi-structured interviews with women who had a child with a serious mental illness (schizophrenia, schizoaffective disorder, bipolar disorder) and a first-degree relative with another common complex disorder (diabetes, heart disease, cancer). Interviews were transcribed and subjected to thematic analysis. Saturation was reached when nine women had participated. Serious mental illness was perceived as being more severe and as having a greater impact on the family than diabetes, heart disease, or cancer. Themes identified included guilt, stigma, and loss. Some of the most important issues that contribute to mothers' perceptions that serious mental illness is more severe than other common complex disorders could be effectively addressed in genetic counseling. Developing a heightened awareness of how family members experience a relative's mental illness may help genetic counselors to be better able to provide psychosocial support to this group, whether serious mental illness constitutes the primary reason for referral or appears in the family history during counseling for a different referral reason.
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http://dx.doi.org/10.1007/s10897-011-9420-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3753288PMC
August 2012

Effects of a documentary film on public stigma related to mental illness among genetic counselors.

J Genet Couns 2012 Aug 29;21(4):573-81. Epub 2011 Oct 29.

Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.

Many people, including genetic counselors, have been found to hold stigmatizing attitudes towards people with mental illnesses. We aimed to determine whether these attitudes could be changed by exposing genetic counselors and genetic counseling students to a documentary film about people with mental illness. We screened the documentary at the 2010 North American conferences for genetic counselors. Immediately before (T1), immediately after (T2), and one month after (T3) watching the documentary, participants self-rated their comfort with asking patients about mental illness, and they completed scales measuring two aspects of stigma: stereotype endorsement, and desire for social distance. A total of 87 T1 and T2 questionnaires, and 39 T3 questionnaires were returned. At T2 and T3, 34.5% and 48.7% respectively reported feeling more comfortable to ask patients about mental illness. Scores on the social distance and stereotype endorsement scales decreased significantly from T1 to T2, but returned to initial levels at T3. The findings suggest the documentary increased genetic counselors' and genetic counseling students' comfort with asking about mental illness and temporarily decreased their stigmatizing attitudes.
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http://dx.doi.org/10.1007/s10897-011-9414-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3706328PMC
August 2012

Translating genomic research into care for people with schizophrenia in China.

Schizophr Res 2011 Sep 1;131(1-3):31-4. Epub 2011 Jun 1.

Key Laboratory of Mental Health, Institute of Psychology, Chinese Academy of Sciences, Neuropsychology and Applied Cognitive Neuroscience Laboratory, Institute of Psychology, Chinese Academy of Sciences, Beijing 100101, China.

The implications of increased understanding of the genetic contribution to schizophrenia for patients and their families remain unclear. We carried out a study of Chinese patients'(n=118) and relatives' (n=78) views of illness severity, attribution of cause, concern about developing illness, and effect of schizophrenia on family planning. A comparison sample of English-survey respondents was also obtained, using the same series of questions (n=42 patients, n=127 relatives). Fewer Chinese patients and family members rated schizophrenia as very severe (33%) than did the predominantly North American respondents (67%, p<0.0001). The pattern of attribution of cause differed between samples (p<0.0001), favoring environmental alone in the Chinese sample (52%), with a low frequency of genetics alone (9%). Although comparatively fewer Chinese respondents were very concerned about developing schizophrenia themselves or about the risk of illness in their families (21%), this high level of concern was more common in family members (28%). Finally, Chinese respondents were somewhat less likely to indicate that schizophrenia impacted on family planning decisions (31%) than were English-survey respondents (45%, p=0.02). The descriptive findings contribute to understanding schizophrenia in China. The comparative findings must be regarded as preliminary, since differences in demographics could influence results. The present findings suggest that understanding patients' and families' attributions of cause of schizophrenia may be important for developing a shared model of illness in order to decrease stigmatization, and improve therapeutic alliances.
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http://dx.doi.org/10.1016/j.schres.2011.05.008DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3706332PMC
September 2011

Genetic counselors' attitudes towards individuals with schizophrenia: desire for social distance and endorsement of stereotypes.

Patient Educ Couns 2011 Jan 7;82(1):69-73. Epub 2010 Mar 7.

Genetic Counseling Department, Arcadia University, Glenside, PA, Canada.

Objective: psychiatric disorders are profoundly stigmatized conditions. Many groups of healthcare professionals harbor negative attitudes towards affected individuals, which may interfere with the healthcare relationship, but genetic counselors' attitudes towards individuals with psychiatric disorders have not been investigated. Thus, we conducted an exploratory study to assess genetic counselors' desire for social distance from individuals with schizophrenia, and the degree to which stereotypes about people with schizophrenia were endorsed.

Methods: members of the National Society of Genetic Counselors were invited to complete an online survey, which included scales measuring: desire for social distance from individuals with schizophrenia, and endorsement of positive and negative stereotypes about these individuals.

Results: in total, 142 surveys were completed. Genetic counselors expressed greater desire for social distance from an individual with schizophrenia in more intimate proposed relationship scenarios, and felt negative stereotypes about affected individuals were more typifying than positive stereotypes. Experience with psychiatric disorders did not significantly affect desired social distance or stereotypical attitudes.

Conclusions: genetic counselors express some negative attitudes towards individuals with schizophrenia, which may impede the counselor/client relationship. Future research in this area is suggested.

Practice Implications: efforts should be made to promote positive attitudes, which would improve the ability of genetic counselors to provide optimal service for individuals with schizophrenia and their families.
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http://dx.doi.org/10.1016/j.pec.2010.02.007DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3726382PMC
January 2011

Re-conceptualizing risk in genetic counseling: implications for clinical practice.

J Genet Couns 2010 Jun 30;19(3):228-34. Epub 2010 Jan 30.

Department of Psychiatry and Medical Genetics, University of British Columbia, Rm A3-112 - 3rd Floor, CFRI Translational Lab Building, 938 W28th Ave, Vancouver, BC, Canada, V5Z 4H4.

Risk communication is an important component of genetic counseling. However, many authors have noted that after genetic counseling, subjective risk frequently does not match the objective risk provided by the counselor. This inevitably leads to the conclusion that the risk communication process was not "effective". There has been much discussion about how this problem can be better addressed, such that our clients recall numeric risks more accurately after genetic counseling. This article draws on the risk and probability literature from other fields (including psychology, economics, philosophy and climate change) to deconstruct the concepts of "risk" and risk perception to attempt to expand upon and develop thought and discussion about and investigation of the risk communication process in genetic counseling.
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http://dx.doi.org/10.1007/s10897-010-9279-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3706327PMC
June 2010

Genetic counseling for schizophrenia: a review of referrals to a provincial medical genetics program from 1968 to 2007.

Am J Med Genet A 2010 Jan;152A(1):147-52

Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada.

Recent studies have shown that individuals with schizophrenia and their family members are interested in genetic counseling, but few have received this service. We conducted an exploratory, retrospective study to describe (a) the population of individuals who were referred to the BC provincial medical genetics program for genetic counseling for a primary indication of schizophrenia, and (b) trends in number of referrals between 1968 and 2007. Referrals for a primary indication of schizophrenia were identified through the provincial program database. Charts were reviewed and the following information was recorded: discipline of referring physician, demographics, psychiatric diagnosis, referred individual's and partner's (if applicable) family history, and any current pregnancy history. Data were characterized using descriptive statistics. Our results showed that between 1968 and 2007, 288 referrals were made for a primary indication of schizophrenia. Most referrals were made: (a) for individuals who had a first-degree family member with schizophrenia, rather than for affected individuals, (b) for preconception counseling, and (c) by family physicians (69%), with only 2% by psychiatrists. In conclusion, for British Columbia, individuals affected with schizophrenia and their family members are rarely referred for psychiatric genetic counseling. There is a need to identify barriers to psychiatric genetic counseling and develop strategies to improve access.
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http://dx.doi.org/10.1002/ajmg.a.33193DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3958978PMC
January 2010

Exploring genetic counselors' perceptions of and attitudes towards schizophrenia.

Public Health Genomics 2010 26;13(1):21-6. Epub 2009 Mar 26.

Genetic Counseling Program, Arcadia University, Glenside, Pa., USA.

Schizophrenia is a common complex condition, for which no genetic testing is yet clinically available. Genetic counseling for psychiatric disorders is viewed by genetic counselors as a growth area, and to meet any increase in demand it is important to understand existing context. Thus, we surveyed general practice members of the National Society of Genetic Counselors, to examine perceptions and attitudes relating to schizophrenia. A total of 136 genetic counselors completed the survey, of whom 50% were engaged in general practice roles and therefore eligible to participate. Of these, 40% reported 'rarely' or 'never' asking about psychiatric illness when taking a family history. Some respondents expressed concern that discussing genetics of schizophrenia and providing risk assessment with families may be more confusing or worrisome than helpful. Many counselors reported that patients feel frustrated with the inability of genetic counselors to provide individual risk calculations. It appears that genetic counselors are reluctant to ask patients about psychiatric illness, and are concerned that their services might not be helpful in the context of schizophrenia.
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http://dx.doi.org/10.1159/000210096DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3706330PMC
September 2013

A novel syndrome with psychiatric features and review of malformation syndromes with psychiatric disorders.

Am J Med Genet A 2009 Feb;149A(4):713-21

Provincial Medical Genetics Programme, Department of Medical Genetics, University of British Columbia, Vancouver, Canada.

Psychiatric disease occurs with increased frequency in a number of malformation syndromes. We hypothesize that the study of these disorders is helpful for understanding the pathophysiology of psychiatric disease. With this objective, we have been screening for individuals with malformations and prominent psychiatric disease. We report on a man with visual and auditory hallucinations and behavioral problems who was the product of an incestuous relationship and had anomalies primarily of his face, hands and feet. His distinctive features define an undescribed acro-auricular malformation syndrome with a psychiatric component. The study of Mendelian syndromes such as the one presented will likely be helpful for isolating novel genes involved in psychiatric illness.
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http://dx.doi.org/10.1002/ajmg.a.32709DOI Listing
February 2009

Psychiatric genetic counselling for parents of individuals affected with psychotic disorders: a pilot study.

Early Interv Psychiatry 2008 May;2(2):80-9

Centre for Complex Disorders/UBC Department of Psychiatry, VGH Research Pavilion, Vancouver, BC, Canada.

Aim: There has been increasing interest in the concept of applying genetic counselling to psychiatric disorders, but despite its relevance to psychiatric illness, and interest from the target group, there have been no empiric investigations of psychiatric genetic counselling. In a population of unaffected parents of individuals with first episode as well as more chronic psychotic disorders, we aimed to investigate whether psychiatric genetic counselling: is perceived to be useful, could increase understanding of the causes of psychiatric illness and decrease concern about other relatives becoming affected.

Methods: Subjects (n=13) participated in a genetic counselling session. The session was a clinical intervention similar to what would be carried out as part of a referral for any disease with a hereditary component, but specific for psychosis. Questionnaires were used to assess (pre-counselling): motivations for attending, concern about other relatives developing psychiatric illness, and (post-counselling) whether the intervention: (i) improved understanding of mental illness; (ii) modified concern about other relatives becoming affected; and (iii) was perceived to be useful.

Results: Desire for knowledge motivated participation. Immediately after the session, and 1 month later >92% and 100% of participants, respectively, felt that the session was useful. Genetic counselling reduced concern about other relatives becoming affected as risks were lower than participants had expected. All participants felt that their understanding of the causes of psychiatric illness had improved through genetic counselling.

Conclusion: Psychiatric genetic counselling may benefit parents of individuals with psychiatric illnesses. Avenues for future research are highlighted.
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http://dx.doi.org/10.1111/j.1751-7893.2008.00062.xDOI Listing
May 2008

Psychiatric disorders in clinical genetics II: Individualizing recurrence risks.

J Genet Couns 2008 Feb 11;17(1):18-29. Epub 2007 Dec 11.

Department of Psychiatry, University of British Columbia, Vancouver, BC, Canada,

This is the second article of a two-part professional development series on genetic counseling for personal and family histories of psychiatric disorders. It is based on an Educational Breakout Session presented by The Psychiatric Special Interest Group of the National Society of Genetic Counselors at the 2006 Annual Education Conference. While the first article in this two part series dealt with addressing family histories of psychiatric disorders in clinical practice, the following discussion deals with the generation and provision of individualized recurrence risks for psychiatric disorders, based on empiric risk data. We present four cases that illustrate important components of and process for generating individualized risk assessment for family histories of psychiatric disorders.
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http://dx.doi.org/10.1007/s10897-007-9121-4DOI Listing
February 2008

Psychiatric disorders in clinical genetics I: Addressing family histories of psychiatric illness.

J Genet Couns 2008 Feb 26;17(1):6-17. Epub 2007 Oct 26.

National Human Genome Research Institute, NIH, Bethesda, MD 20892, USA,

This is the first article of a two-part professional development series addressing genetic counseling for personal and family histories of psychiatric disorders. It is based on an Educational Breakout Session presented by the Psychiatric Special Interest Group of the National Society of Genetic Counselors at the 2006 Annual Education Conference. This article examines issues that arise in addressing family histories of psychiatric illness, while the second article in the series considers the generation and provision of individualized recurrence risks for psychiatric disorders. In this article we discuss the importance of managing uncertainty for affected individuals and their close family members who have been referred to genetics for a number of different indications. We then use four simulated cases to make recommendations about the scope and timing of discussions related to the psychiatric family history.
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http://dx.doi.org/10.1007/s10897-007-9120-5DOI Listing
February 2008

The genomic era and serious mental illness: a potential application for psychiatric genetic counseling.

Psychiatr Serv 2007 Feb;58(2):254-61

Department of Psychiatry, University of British Columbia, 203-828 West 10th Ave., Vancouver, British Columbia, Canada V5Z 1L8.

Genetic counseling is an important clinical service that is routinely offered to families affected by genetic disorders or by complex disorders for which genetic testing is available. It is not yet routinely offered to individuals with serious mental illnesses and their families, but recent findings that beliefs about the cause of mental illness can affect an individual's adaptation to the illness suggest that genetic counseling may be a useful intervention for this population. In a genetic counseling session the counselor discusses genetic and environmental contributors to disease pathogenesis; helps individuals explore conceptions, fears, and adaptive strategies; and provides nondirective support for decision making. Expected outcomes may include reductions in fear, stigma, and guilt associated with a psychiatric diagnosis; improvements in adherence to prescribed medications; declines in risk behaviors; and reductions in misconceptions about the illness. The authors endorse a multidisciplinary approach in which a psychiatrist and genetic counselor collaborate to provide comprehensive psychiatric genetic counseling.
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http://dx.doi.org/10.1176/ps.2007.58.2.254DOI Listing
February 2007

The genomic era and perceptions of psychotic disorders: genetic risk estimation, associations with reproductive decisions and views about predictive testing.

Am J Med Genet B Neuropsychiatr Genet 2006 Dec;141B(8):926-8

Department of Psychiatry, Centre for Complex Disorders, University of British Columbia, Vancouver, British Columbia, Canada.

As a result of publicity surrounding genetic advances, increasing public awareness of a genetic role in major mental illness may be contributing to a "geneticization" of these illnesses. Geneticization could lead to oversimplified ideas about genetic risk, producing significant social consequences. We sought to investigate perceptions of genetic risk, associated effects on reproductive decisions and attitudes towards genetic testing amongst unaffected relatives of individuals with psychosis. A web-based survey design was used, which all visitors to a psychosis support/information website had the option to complete. Responders were representative of website visitors, and the study design facilitated collection of a large dataset, although the response rate was low. Over-estimating risk was associated with reproductive decisions favoring fewer children, and more positive attitudes towards genetic testing. Facilitating accurate risk perception through genetic counseling could significantly impact reproductive decisions, and the appropriate use of genetic tests in the future.
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http://dx.doi.org/10.1002/ajmg.b.30372DOI Listing
December 2006

Future ethical use of genetic findings on schizophrenia: comments on data interpretation, and support for conclusions.

Am J Med Genet B Neuropsychiatr Genet 2006 Jun;141B(4):428; author reply 429

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http://dx.doi.org/10.1002/ajmg.b.30313DOI Listing
June 2006