This book involves an in-depth analysis of the ethical, political and philosophical issues related to health-oriented screening programs.

This article draws on an empirical investigation of how Australia’s cervical screening program came to be the way it is. The study was carried out using grounded theory methodology and primarily uses interviews with experts involved in establishing, updating or administering the program. We found strong differences in experts’ normative evaluations of the program and beliefs about optimal ways of achieving the same basic outcome: a reduction in morbidity and mortality caused by invasive cervical cancer. Our analysis demonstrates how variations (...) in values and preferences associated with key concepts underpinning public health such as benefit, harm and burden led to different perspectives on the purpose of an organized cervical screening program. These variations were largely driven by different bases of professional experience. Differently conceived purposes in turn led to conflict over how the program should be operationalized. Following Frith’s model of empirical bioethics, the results of the study both draw on and inform the existing public health and screening ethics literature. (shrink)

Background: Noninvasive prenatal testing (NIPT) is a new prenatal screening technology that became commercially available in the United States in 2011. NIPT's increased accuracy and low false positive rate compared to previous screening methods enable many women to avoid invasive diagnostic testing and receive much desired reassurance. NIPT has received much attention for both its benefits and drawbacks. Methods: Observation of genetic counseling sessions and qualitative interviews with women offered NIPT at a large academic medical center were conducted. Two ethnographic (...) cases studies derived from the overall data set are used to illustrate the study findings. Results: Many fundamental ethical questions about prenatal screening, such as abortion or the value of disabled children, often do not emerge during clinical sessions, enabling most women to defer thinking about these issues until the future, when and if the need should arise. It may only be in the rare case when a woman receives a positive test result that she may be forced to confront ethical issues that she had up until then been able to avoid. Conclusions: Women want, and are grateful to have, access to NIPT, which offers much desired reassurance. This desire for reassurance may come at the expense of having contemplated the potential negative outcomes and limitations of testing. In the rare circumstance where women do not receive reassuring results, they may be unprepared and shocked by what NIPT can and cannot reveal. The routinization of NIPT as the latest and best available prenatal screening test does not necessarily create new ethical issues, but this study highlights ethical continuities following its arrival. However, the continued expansion of NIPT to include more conditions and women will increase the number of women who receive positive results, including false positives, and who may be shocked and unprepared as a result. (shrink)