Learning Objective #1: Describe current bioethical issues in genetic testing of children

Learning Objective #2: Describe current trends of bioethical analysis in genetic testing of children

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Background: Since the inception of the Ethical, Legal, and Social Aspects Program (ELSI) of the Human Genome Project in 1990, a large part of the of the Program's efforts have been devoted to setting a research agenda for examining the effects of the genomic revolution on the health of individuals in our society. Within this area, a specific topic that has elicited much concern has been the genetic testing of children (GTIC). The original conceptual framework that most of the researchers and commentators used when examining the issues of GTIC has been the principled approach, where individual-centered concepts such as autonomy are a unit of analysis.

Theoretical Framework: Ethical analysis of clinical issues typically is approached from a principled theoretical framework. The author proposes that alternative ethical frameworks may better explain clinical decisions about GTIC.

Research Question: What trends has the ethical analysis of GTIC followed in the last 15 years?

Methods: Using the OVID search engine, a representative sample of theory and data-based reports from representative, peer-reviewed journals from both the bioethical and genetics literature within the past 10 years will be examined to determine what bioethical frameworks authors/researchers are using to analyze the issues involved in GTIC. Reports will describe numbers of articles in the sample while reporting whether the theoretical framework of analysis is 1) principle-based; 2) non-principled theory based; or 3) a blend of more than one theoretical framework.

Significance of the Study: In a review of the literature for his own GTIC study (Twomey et al. 2004, STT, Dublin), the author found trends suggest a shift from a mostly principled theoretical base to the inclusion of other ethical models. A formal review of the literature is necessary to document such a shift and to begin analyzing its implications for the ethics of GTIC.