Huntington's Chorea: Some Psychodynamics seen in those at Risk and in the Responses of the Helping Professions

Martindale, Brian

doi:10.1192/bjp.150.3.319

Cited by 17 publications

(11 citation statements)

References 9 publications

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“…The counselor should be aware of their own feelings of helplessness [Martindale 1987;Thies et al, 1993;Thomassen et al, 1993] and be careful not to consider the test as the only option. Furthermore, counselors should recognize that the messenger's view of the family is the view of only one individual and other avenues and perspectives on the family should be sought in order to obtain an ''objective'' view of the family.…”

Section: The Messenger Of the News: Mr A (Iii-1)mentioning

confidence: 99%

BRCA1 in the family: A case description of the psychological implications

et al. 1997

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Our experience with the first family in the Netherlands for whom predictive DNA-testing for Hereditary Breast and Ovarian Cancer (HBOC) became an option is described. This serves to illustrate the complex emotional impact on a family as a whole, and upon the members separately, of becoming aware that breast and ovarian cancer is hereditary, and the implications of undergoing predictive testing. All family members received genetic counseling and were offered pre- and post-test psychological follow-up. We observed two important roles within the family. One member became "the messenger of the news" informing the relatives of the hereditary character of cancer in the family. Another was "the first utilizer" of the new options; namely, the predictive DNA-test and preventive surgery. This first utilizer became the example to the rest of the family. Decisions made about preventive treatment (prophylactic ovariectomy and/or mastectomy) were based on the experiences within the family, whether one identified with an affected family member with breast or with ovarian cancer. The actions and reactions perceived were illustrative of what kind of support provisions should be provided in addition to the genetic and oncological counseling for HBOC. Moreover HBOC should be considered both as an individual and a family problem and be treated as such in genetic counseling.

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Section: The Messenger Of the News: Mr A (Iii-1)mentioning

confidence: 99%

BRCA1 in the family: A case description of the psychological implications

et al. 1997

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“…42,43 Psychological defense mechanisms such as denial and rationalization have been observed as reasons for parents not telling children in Huntington's disease families. 44 In hereditary breast and ovarian cancer families, studies suggest that some patients use similar strategies to minimize the emotional impact of the risk to themselves and their daughters. As a result, there may be interruptions in the transmission of risk information to some children if a parent declines to tell 41 or if a sibling or parent dies.…”

Section: Unbearability Of Knowingmentioning

confidence: 99%

Predictive genetic testing in minors for adult‐onset genetic diseases

Borry

Goffin

Nys

et al. 2008

Mount Sinai J Medicine

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This article analyses the ethical discussion of predictive genetic testing in minors for genetic conditions for which there is no phenotypic evidence for disease at the considered time of testing and for which there is currently no treatment available to prevent or forestall the development of the condition. After a presentation of the position of various professional guidelines, we discuss the position and arguments that have been advanced in a recent article that defends a position that is opposed to the professional recommendations. In the article, we discuss the position of voluntary choices and autonomous and informed decision-making in a context of open communication. Thereafter, we analyze the nonmedical benefits and harm related to this type of testing. Finally, we critically analyze 4 arguments: the potential provision of good news if a test is performed, the unbearability of knowing, identity and adjustment, and parental anxiety and uncertainty.

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“…The implications are significant, and may prove onerous IKessler, 19791, particularly in the case of Huntington disease [HDI. Professional pessimism about the lack of cure and adequate treatment LKessler, 1987;Martindale, 1987;Kessler and Bloch, 19891, may "wittingly or unwittingly collude with relatives in encouraging suicide" [Kessler, 1987;Martindale, 1987;Kessler and Bloch. 19891.…”

Section: Duty To Discern and Respond To A Patient'smentioning

confidence: 99%

Psychological aspects of genetic counseling: A legal perspective

Sharpe¹

1994

Am. J. Med. Genet.

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Carrier and presymptomatic genetic testing information can have profound psychological consequences for a patient and the family. American and Canadian professional accreditation standards for clinical genetics state that the health care provider must be prepared to provide psychological support. Through a survey of human/medical genetics journals and texts, this article identifies those protocols that constitute an appropriate standard of care, and examines the legal implications, particularly with regard to the law of medical malpractice.

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Huntington's Chorea: Some Psychodynamics seen in those at Risk and in the Responses of the Helping Professions

Cited by 17 publications

References 9 publications

BRCA1 in the family: A case description of the psychological implications

BRCA1 in the family: A case description of the psychological implications

Predictive genetic testing in minors for adult‐onset genetic diseases

Psychological aspects of genetic counseling: A legal perspective

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