Evaluating a unique, specialist psychiatric genetic counseling clinic: uptake and impact

Inglis, Angela; Koehn, D.; McGillivray, Barbara; Stewart, S. Evelyn; Austin, Jehannine

doi:10.1111/cge.12415

Cited by 103 publications

(178 citation statements)

References 38 publications

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“…Optimal genetic counseling incorporates both education and encouragement, assisting patients in embracing their autonomy and understanding what sort of control they might have in managing their symptoms [28]. Indeed, a specialized psychiatric genetic counseling clinic was shown in a naturalistic study to be successful in increasing patients’ sense of empowerment and self-efficacy [42]. A small randomized trial of genetic counseling for people with serious mental disorders showed equivalent gains in knowledge in patients given educational material to read, but improved accuracy of risk perception as compared with patients on a waiting list; there were no significant differences among the groups on stigma or perceived control [43].…”

Section: Addressing the Ethical Challengesmentioning

confidence: 99%

Anticipating the Ethical Challenges of Psychiatric Genetic Testing

Appelbaum

Benston

2017

Curr Psychiatry Rep

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Purpose of Review Genetic testing for mental illness is likely to become increasingly prevalent as the science behind it is refined. This article identifies anticipated ethical challenges for patients, psychiatrists, and genetic counselors and makes recommendations for addressing them. Recent Findings Many of the ethical challenges of psychiatric genetic testing are likely to stem from failures to comprehend the nature and implications of test results. Recent studies have identified gaps in the knowledge base of psychiatrists and genetic counselors, which limit their abilities to provide patients with appropriate education. A small number of studies have demonstrated the value of counseling in empowering patients to deal with relevant genetic information. Summary Psychiatrists and other health professionals must be able to assist patients and families in making informed decisions about genetic testing and interpreting test results. Filling their knowledge gaps on these issues will be a critical step towards meeting these responsibilities.

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Section: Addressing the Ethical Challengesmentioning

confidence: 99%

Anticipating the Ethical Challenges of Psychiatric Genetic Testing

Appelbaum

Benston

2017

Curr Psychiatry Rep

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“…Empirical studies suggest that when the role of genetics is explained to individuals with psychiatric disorders and their families in the context of the role of the environment (i.e. genetic counselling), outcomes are positive (Austin and Honer, 2008), internalized stigma can decrease (Costain et al, 2014a, 2014b; Hippman, 2016), and empowerment increases (Inglis et al, 2015). …”

mentioning

confidence: 99%

Receptiveness to participation in genetic research: A pilot study comparing views of people with depression, diabetes, or no illness

Roberts

Kim

2017

Journal of Psychiatric Research

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Background Genetic research in human health relies on the participation of individuals with or at-risk for different types of diseases, including health conditions that may be stigmatized, such as mental illnesses. This preliminary study examines the differences in attitudes toward participation in genetic research among individuals with a psychiatric disorder, individuals with a physical disorder, and individuals with no known illness. Methods Seventy-nine individuals with a history of diabetes or depression, or no known illness, underwent a simulated consent process for a hypothetical genetic research study. They were then surveyed about their willingness to participate in the hypothetical study and their attitudes about future and family participation in genetic research. Results Participants with and without a history of depression ranked participating in genetic and medical research as very important and indicated that they were likely to participate in the hypothetical genetics study. Expressed willingness to participate was generally stable and consistent with future willingness. Individuals less strongly endorsed willingness to ask family members to participate in genetic research. Conclusion Individuals with and without a history of mental illness viewed genetic and medical research favorably and expressed willingness to participate in real-time and in the future. Informed consent processes ideally include an exploration of influences upon volunteers’ enrollment decisions. Additional empirical study of influences upon genetic research participation is important to ensure that volunteers’ rights are respected and that conditions that greatly affect the health of the public are not neglected scientifically.

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“…Given the pressures involved in these emotional decisions, Dr. Bowers should emphasize ahead of referral that genetic counseling offers significant psychotherapeutic and educational value and does not commit Mrs. Castle to genetic testing [11]. Mrs. Castle should expect genetic counseling to contextualize her risk and provide an informative, nondirective discussion of the implications of the disease.…”

Section: Figure 2 Genetic Testing Decision Treementioning

confidence: 99%

How Should Clinicians Counsel a Woman with a Strong Family History of Early-Onset Alzheimer's Disease about Her Pregnancy?

Mapes¹,

O’Brien

King³

2017

AMA Journal of Ethics

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Counseling patients regarding the benefits, harms, and dilemmas of genetic testing is one of the greatest ethical challenges facing reproductive medicine today. With or without test results, clinicians grapple with how to communicate potential genetic risks as patients weigh their reproductive options. Here, we consider a case of a woman with a strong family history of early-onset Alzheimer's disease (EOAD). She is early in her pregnancy and unsure about learning her own genetic status. We address the ethical ramifications of each of her options, which include genetic testing, genetic counseling, and termination versus continuation of the pregnancy. Our analysis foregrounds clinicians' role in helping to ensure autonomous decision making as the patient reflects on these clinical options in light of her goals and values. CaseDuring his third-year OB-GYN clerkship in medical school, Samuel is working with Dr. Bowers seeing patients both in the hospital (on the labor and delivery service) and in the outpatient clinic for routine prenatal visits. For the outpatient visits, he sees patients who present for initial appointments to confirm pregnancy and for appointments just prior to delivery.About halfway through his clerkship, Samuel and Dr. Bowers see Mrs. Castle and her husband for an initial visit to confirm a pregnancy. Mrs. Castle is a healthy 41-year-old woman with a strong family history for early-onset Alzheimer's dementia. Her father was diagnosed with Alzheimer's dementia at age 45 and died about five years later. Mrs. Castle's older sister, who is in her late 40s, has also been diagnosed with early-onset Alzheimer's dementia and is currently living in long-term care due to complications of the disease.Mrs. Castle and her husband had tried to conceive for more than a year without success. They had met with a specialist and briefly considered assisted reproductive technology when they put their plans on hold due to Mrs. Castle's sister's illness. The couple thought

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Evaluating a unique, specialist psychiatric genetic counseling clinic: uptake and impact

Cited by 103 publications

References 38 publications

Anticipating the Ethical Challenges of Psychiatric Genetic Testing

Anticipating the Ethical Challenges of Psychiatric Genetic Testing

Receptiveness to participation in genetic research: A pilot study comparing views of people with depression, diabetes, or no illness

How Should Clinicians Counsel a Woman with a Strong Family History of Early-Onset Alzheimer's Disease about Her Pregnancy?

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