The use of Big Data—however the term is defined—involves a wide array of issues and stakeholders, thereby increasing numbers of complex decisions around issues including data acquisition, use, and sharing. Big Data is becoming a significant component of practice in an ever-increasing range of disciplines; however, since it is not a coherent “discipline” itself, specific codes of conduct for Big Data users and researchers do not exist. While many institutions have created, or will create, training opportunities to prepare people to (...) work in and around Big Data, insufficient time, space, and thought have been dedicated to training these people to engage with the ethical, legal, and social issues in this new domain. Since Big Data practitioners come from, and work in, diverse contexts, neither a relevant professional code of conduct nor specific formal ethics training are likely to be readily available. This normative paper describes an approach to conceptualizing ethical reasoning and integrating it into training for Big Data use and research. Our approach is based on a published framework that emphasizes ethical reasoning rather than topical knowledge. We describe the formation of professional community norms from two key disciplines that contribute to the emergent field of Big Data: computer science and statistics. Historical analogies from these professions suggest strategies for introducing trainees and orienting practitioners both to ethical reasoning and to a code of professional conduct itself. We include two semester course syllabi to strengthen our thesis that codes of conduct can be harnessed to support the development of ethical reasoning in, and a sense of professional identity among, Big Data practitioners. (shrink)

Edmund D. Pellegrino, John Collins Harvey, Kevin T. Fitzgerald, SJ; Must the Church be Mute Lest Its Truths be Distorted? A Response to Engelhardt, Christian bi.

Kevin T. Fitzgerald, S.J.; Knowledge Without Wisdom: Human Genetic Engineering Without Religious Insight, Christian bioethics: Non-Ecumenical Studies in Medical.

Le Théâtre Ache Lhamo, Jeux et Enjeux d’Une Tradition Tibétaine, by Isabelle Henrion-Dourcy, Mélanges Chinois et Bouddhiques, vol. 33. Peeters, 2017. 940pp. French. ISBN-13: 978-90-429-3339-2. Pb. €115.

Objective: To develop an approach for seeking informed consent to examine tissues retained from a previous study of sudden infant death syndrome as part of a study on asthma, and to document responses and participation rate.Design: Pilot open-ended approach to 10 volunteer SIDS parents, followed by staged approach to seek consent from the target SIDS families for the asthma study.Participants: Parents of SIDS infants known to SIDS and Kids Victoria and parents of SIDS infants from the 1991–2 SIDS in Victoria (...) case–control study.Main outcomes: Qualitative responses of the piloted parents and study parents, and participation rates.Results: The pilot group responses were used to refine the written material to be provided. Of the 72 families for which contact details were available, 45 gave verbal consent for contact by the Victorian Institute of Forensic Medicine regarding the asthma study, three refused and 24 did not respond to two letters. Thirty-three completed consent forms, all positive for participation in the asthma study, giving a positive response rate of 73% .Conclusions: The use of postmortem tissue for research is acceptable to the next of kin when an approach is sensitive to their concerns and needs and is made by experienced counsellors from a familiar organisation. Despite the painful memories evoked by the approach of the research group, the acceptance rate among those who could be contacted was high. (shrink)

The journal NatureGenetics recently reported a statement made by Dr. Brigitte Boisselier declaring the rights of parents to clone themselves. Dr. Boisselier is the scientific director of ClonaidBeam me up, Scotty!”? How do we begin to respond to this offer and Dr. Boisselier's claim for its ethical justification?