Health care professionals' views of sharing information with families who have a child with a genetic condition.

The purpose of this study was to examine health care professionals' views and strategies for individualizing information sharing in families who have a child with a genetic condition. The sample consisted of 37 health professionals from three clinical sites in the greater metropolitan area of a large Midwestern city. Qualitative content thematic analysis was used to analyze data from the health professionals' semi-structured interviews.

Presymptomatic genetic testing in children for neurofibromatosis 2.

Genetic testing in children, when there is a question of whether or not there is a clear medical benefit that will accrue to the child, is a controversial topic within the health care community. A convenience sample of 10 parents from nine families who had made the decision whether or not to test their children for the neurofibromatosis 2 gene mutation was asked in interviews to describe why they made their choice about presymptomatic testing for this late-onset disease. Findings from a narrative analysis revealed how the nine parents who tested or intended to test their young children saw the decision as a pathway to knowledge that would help the family unit.

Issues in genetic testing of children.

Commentary about the ethical issues involved in the genetic testing in children (GTIC) has centered around beliefs that early testing of children when no medical benefits are anticipated should be discouraged. This article discusses the types of GTIC and the contexts of possible testing scenarios, and provides a review of the current research into the effects of such testing on children and their families. As data cannot support either substantive benefits or harms accrued after GTIC, it is recommended that the traditional ethical analysis based on principled theory be augmented by theories that reflect a family-centered ethic.

Genetic testing of children: confluence or collision between parents and professionals?

Nursing has been challenged to lead in all areas of knowledge development in genetics. In addition to participation in genetic counseling and research, the profession must be an advocate for the proper use of new clinical practices in genetic care. One of these areas is the largely unregulated practice of genetic testing of minor children.