ABSTRACT
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. Four themes captured how health care professionals work with families around information management: Sharing Information with Parents, Taking into Account Parental Preferences, Understanding of the Condition, and Helping Parents Inform Others. These findings contribute to understanding the processes that health professionals use in sharing information with parents who have children with a genetic condition, and they provide guidance for clinical practice, professional training, and future research.
Subject(s)
Attitude of Health Personnel , Caregivers/psychology , Communication , Genetic Diseases, Inborn/genetics , Genetic Predisposition to Disease/psychology , Professional-Family Relations , Child , Comprehension , Decision Making , Female , Genetic Counseling/psychology , Genetic Diseases, Inborn/diagnosis , Genetic Diseases, Inborn/psychology , Genetic Predisposition to Disease/genetics , Health Education , Humans , Male , Parent-Child Relations , Parents/education , Parents/psychology , Trust , Truth DisclosureABSTRACT
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. All parents interviewed noted that their decision was informed by their health team and was not difficult to make. Implications of these findings for bioethical analysis are presented.
Subject(s)
Attitude to Health , Decision Making , Genetic Testing/psychology , Neurofibromatosis 2/diagnosis , Parents/psychology , Adolescent , Adult , Child , Child, Preschool , Conflict, Psychological , Decision Making/ethics , Ethical Theory , Female , Genetic Counseling/ethics , Genetic Counseling/psychology , Genetic Testing/ethics , Humans , Infant , Male , Middle Aged , Narration , Neurofibromatosis 2/genetics , Nurse's Role , Nursing Methodology Research , Parents/education , Principle-Based Ethics , Qualitative Research , Surveys and Questionnaires , UncertaintyABSTRACT
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.
Subject(s)
Child Welfare/ethics , Genetic Privacy/ethics , Genetic Testing/ethics , Truth Disclosure/ethics , Child , Ethics, Medical , Ethics, Nursing , Genetic Counseling/ethics , Genetic Predisposition to Disease , Humans , Personal Autonomy , United StatesABSTRACT
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. Psychological and bioethical concerns have been raised about testing children at parental request when no immediate benefit will result. Several professional bodies have urged the adoption of guidelines that would limit parental choice in the testing process. This article argues that little data exists to support the creation of strict regulations, and also notes that analysis of this issue through the use of alternative ethical theory can yield useful directions for nurses attempting to navigate this controversial topic.
