The increasing implementation of next-generation sequencing technologies in the clinical context and the expanding commercial offer of genetic tests directly-toconsumers has increased the availability of previously inaccessible genetic information. A particular concern in both situations is how the volume of novel information will affect the processing of genetic and genomic information from minors. For minors, it is argued that in the provision of genetic testing, their “right not to know” should be respected as much as possible. Testing a minor early (...) in life eliminates the possibility for the minor to make use of his or her “right not to know.” The article discusses the theoretical underpinnings of the right not know, analyzes reasons why various direct-to-consumer companies process samples from minors, and discusses the right not to know in relation to common complex disorders in a pediatric population. (shrink)

In the last few decades, great progress has been made in both genetic and genomic research. The development of the Human Genome Project has increased our knowledge of the genetic basis of diseases and has given a tremendous momentum to the development of new technologies that make widespread genetic testing possible and has increased the availability of previously inaccessible genetic information. Two examples of this exponential evolution are the increasing implementation of next-generation sequencing technologies in the clinical context and the (...) expanding commercial offer of genetic tests directly-to-consumers.Firstly, the rapid development of next generation sequencing technologies has substantially reduced both the cost and the time required to sequence an entire human genome. These technologies are increasingly being used in the clinical setting with the goal of diagnosing conditions of presumed genetic origin that cannot be explained by targeted sequencing approaches. (shrink)

The principle of double effect is often used in bioethics as a tool to evaluate significant cases in obstetrics and gynecology. In this article the author, a Catholic priest, presents and interprets St. Thomas Aquinas’s delineation of the principle and discusses several classical applications, namely, to hysterectomy during pregnancy, ectopic pregnancy, and craniotomy. He explains the medical anatomy and physiology of the conjoined Maltese twins, Jodie and Mary, and then examines the arguments of four moralists on their separation. He concludes (...) by arguing that the principle morally justified the surgical separation of Jodie and Mary. National Catholic Bioethics Quarterly 9.1 : 85–96. (shrink)

In their target article, Conley et al. (2023) appropriately highlight the ongoing conceptual and practical opacity of public engagement (PE) in the translation of human gene editing (HGE) (Conley e...

Respected Catholic ethicists have recently defended the use of salpingostomy and methotrexate in the management of ectopic pregnancies.This article examines the arguments for the revised assessments to determine whether there are sound reasons to believe that these two methods do not constitute the direct and immediate killing of innocent human beings. National Catholic Bioethics Quarterly 11.1 (Spring 2011): 65–82.

The author addresses the question of how to use value-learning processes to integrate corporate social responsibility (CSR) in organizations as an interesting challenge in (higher) education. Two strategies have been proposed for the issue of CSR: a compliance strategy and a cultural change strategy (Karssing, 2001). This article focuses on the ethical and philosophical presuppositions of these different approaches. The incorporation of CSR in organizations cannot be accomplished by means of a compliance strategy only. Rather, it needs to be supplemented (...) by a strategy aimed at stimulating a transformation process on the corporate culture level. The perspective of change through dialogue is proposed as a means of innovating the curriculum and the primary processes of student education. This organizational change perspective is demonstrated by describing how (ethical) reflective aspects are integrated in the curriculum of the Free University of Amsterdam. An additional case study on organizational value learning is presented to illustrate the thesis that CSR presupposes that university is an adequate context where life-long learning begins. (shrink)

A letter from Howard C. Berkowitz about “Impact of a Clinical Trials Information Handbook on Patient Knowledge, Perceptions, and Likelihood of Participation”.

This article illustrates the practical usefulness of transdisciplinary work for practical theology by showing how input from an occupational therapist informed my understanding and interpretation of the story of Hannetjie, who had been sexually abused as a child. This forms part of a narrative practical theological research project into the spirituality of female adult survivors of childhood sexual abuse. Transdisciplinary work is useful to practical theologians, as it opens possibilities for learning about matters pastors have to face, but may not (...) have knowledge about. A short retelling of Hannetjie’s story is given to provide information about the context of the research. Next, the transdisciplinary process that was followed is mentioned, and the questions that the transdisciplinary team had to respond to are discussed. Following that, I focus more specifically on the occupational therapist’s answers, and the knowledge gained from her contribution, as an example of how a co-researcher from a divergent discipline can inform a theological study. In this case, knowledge was shared about sensory integration and how the brain processes traumatic stimuli, such as sexual abuse. Lastly, the interrelationship between Hannetjie’s body stories, mind stories and spirit stories is discussed to show how the learning received from occupational therapy affected my thinking about Hannetjie’s stories and the relationships between them. Thus, it is concluded that transdisciplinary work has great value for practical theology, especially in the pastor’s daily work with people who are struggling with difficult stories, because we cannot listen to people’s spirit stories in isolation. They are inextricably intertwined with all our stories about ourselves. (shrink)

The Institutional Animal Care and Use Committee is entrusted with assessing the ethics of proposed projects prior to approval of animal research. The role of the IACUC is detailed in legislation and binding rules, which are in turn inspired by the Three Rs: the principles of Replacement, Reduction, and Refinement. However, these principles are poorly defined. Although this provides the IACUC leeway in assessing a proposed project, it also affords little guidance. Our goal is to provide procedural and philosophical clarity (...) to the IACUC without mandating a particular outcome. To do this, we analyze the underlying logic of the Three Rs and conclude that the Three Rs accord animals moral standing, though not necessarily “rights” in the philosophical sense. We suggest that the Rs are hierarchical, such that Replacement, which can totally eliminate harm, should be considered prior to Reduction, which decreases the number of animals harmed, with Refinement being considered last. We also identify the need for a hitherto implicit fourth R: Reject, which allows the IACUC to refuse permission for a project which does not promise sufficient benefit to offset the pain and distress likely to be caused by the proposed research. (shrink)