Psychological aspects of genetic counseling: A legal perspective

Abstract

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.

Overview of natural history, pathology, molecular genetics and management of HNPCC (Lynch syndrome)

“…Psychological distress may even be observed among persons who are told that they are not carriers of a deleterious gene Hayden, 1991;Huggins et al, 1992) and those who withdraw from testing or receive equivocal results (Wiggins et al, 1992). In an extensive review of the genetic counseling literature, Sharpe (1994) reaffirmed that providing genetic information may provoke strong psychological responses, particularly denial, anxiety,…”

Ethical, legal, and practical concerns about recontacting patients to inform them of new information: The case in medical genetics

“…Generally speaking, this post-treatment relationship will continue until [Sharpe, 1994b[Sharpe, , 1996Blanchette v. Barrett, 1994]: (1) it is terminated by the patient; (2) it is terminated by mutual consent; (3) it is terminated by the physician after reasonable notice has been provided to the patient; or (4) the physician's services are no longer required (this may be conditional upon the patient having been provided with reasonable notice).…”

“…Various codes and principles of ethics of organizations, such as the American Medical Association and the Canadian Medical Association [Sharpe, 1994b], and courts of law [Longman v. Jasiek, 1980;Sharpe, 1994bSharpe, , 1996 have long recognized that a physician has a posttreatment duty of care to a patient, including the duties to monitor a patient's condition, to provide appropriate aftercare, to refer, and to not abandon the patient. Generally speaking, this post-treatment relationship will continue until [Sharpe, 1994b[Sharpe, , 1996Blanchette v. Barrett, 1994]: (1) it is terminated by the patient; (2) it is terminated by mutual consent; (3) it is terminated by the physician after reasonable notice has been provided to the patient; or (4) the physician's services are no longer required (this may be conditional upon the patient having been provided with reasonable notice).…”

“…Referral to another physician may not necessarily terminate the duty of care if the patient is in continued need of the physician's expert care [Longman v. Jasiek, 1980;Sharpe, 1994bSharpe, , 1996. The Longman v. Jasiek [1980] decision and arguments made about a geneticist's duty of continuing care in Huntington disease [Sharpe, 1994b[Sharpe, , 1996 are examples illustrating situations where the patient may require immediate and continuing treatment and management.…”

“…The Longman v. Jasiek [1980] decision and arguments made about a geneticist's duty of continuing care in Huntington disease [Sharpe, 1994b[Sharpe, , 1996 are examples illustrating situations where the patient may require immediate and continuing treatment and management. This continuing duty of care arguably could include the obligation to advise of any developments in management and treatment that would prove of bene®t or detriment to the patient [Sharpe, 1994b]. What each of these situations has in common, however, is that the patient is in continued need of a physician's expert care [-Sharpe, 1994b].…”