Presymptomatic testing for Huntington disease: Is there a duty to test those under the age of eighteen years?

Parental attitudes regarding carrier testing in children at risk for fragile X syndrome

“…They indicated that the reasons they decided to test included a desire to support their children by providing information, prevent resentment when the children found out later in life they were at risk, and help prepare for the future. Sharpe [1992] has argued, in the situation of presymptomatic testing for Huntington disease in minors, that the child's parents were in the best position to evaluate the social, familial, economic, and emotional factors influencing what was in the best interest of their child. The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research [1983] has supported parental involvement in decision making regarding critical health care decisions for children.…”

Testing Adolescents for a Hereditary Breast Cancer Gene (BRCA1)

“…19 A few authors have taken a position in favor of genetic testing of minors in special cases. 20,21 Wertz et al 22 recommend that adolescents should be the primary decision makers when the test "may be useful to the minor in making reproductive decisions now or in the near future." Sharpe 20 questions whether there is a "right to withhold information."…”

Genetic counseling and testing for Huntington's disease: A historical review

“…These guidelines continue to be used and referred to today, and over the last two decades, they have also served as a model for predictive testing in other disorders and predispositions. The European HD Network produced the first substantive revision to these guidelines in two recent documents, one for predictive testing and [1987] Focuses on the development of the gene test Shaw [1987] Discussion of ethical issues around the role of predictive testing Quaid [1991] Discusses the importance of patient autonomy MacKay [1991] Emphasizes the importance of caution in predictive testing Turner and Willoughby [1990] Ethical conflicts arising in a clinical testing program DeGrazia [1991] Discusses ethical issues in predictive testing, emphasizing the appropriateness of paternalism Went [1990] Internationally agreed-upon protocol for HD predictive testing Wexler [1991Wexler [ , 1992 Discussion of ethical issues in HD gene testing McCormick et al [1992] Case discussion Turner [1992] Discussion of ethical issues European Community HD Collaborative Study [1993] Almost half of patients referred for predictive testing had social or ethical challenges Sharpe [1993] Predictive testing of children Gelman-Kohan et al [1993] Case report of a request for predictive testing of a child in Israel Burgess [1994] Extrapolates from the HD experience to Alzheimer's disease Sharpe [1994] Attempts to define objectives and practices that constitute a standard of care for genetic counseling in HD predictive testing Paulson and Prior [1997] Discusses issues related to results disclosure Scourfield et al [1997] Discusses third-party referrals, testing children, and testing in the context of psychiatric illness van den Boer-van den Berg and Maat-Kievit [2001] Dealing with genetic uncertainty in the clinic Hakimian [2000] Ethics and the duty to inform family members of their genetic risk of HD Martinez [1998] Genetic testing of children and adolescents Burke et al [2001] ELSI issues vary depending on the clinical validity and treatment implications of the disorder Tassicker et al [2003] ELSI issues related to maternal requests for prenatal testing when the at-risk father does not want to know his genetic status Chapman [2002] Emphasis on the risks and ethical dilemmas of testing of younger adults Lilani [2005] HD as an example of a late onset genetic disease Toufexis and Gieron-Korthals [...…”