Neither the range of potential results from genomic research that might be returned to participants nor future uses of stored data and biospecimens can be fully predicted at the outset of a study. Informed consent procedures require clear explanations about how and by whom decisions are made and what principles and criteria apply. To ensure trustworthy research governance, there is also a need for empirical studies incorporating public input to evaluate and strengthen these processes.

Genome-wide association studies raise important ethical and regulatory issues. This is particularly true of the current move toward broad sharing of genomic and phenotypic data. Our survey study examined the opinions of professionals involved in human subjects protection regarding genetic research review. The majority indicated that it is important for their institutional review board to offer guidance about developing and using a data repository or biobank that includes genetic data, and also about sharing this data with other investigators. Only one-third (...) of respondents reported that the National Institutes of Health policy regarding data sharing among researchers in genome-wide association studies is clear. Another third answered that they did not know whether this policy is clear. Findings from this study suggest a need for increased education for IRB professionals regarding the existing data sharing policy, collaboration among IRB professionals and researchers to define best practices, and further empirical research into prospective research participants’ information needs and preferences in the context of wide data sharing. (shrink)

The informed consent process for genetic testing does not commonly address preferences regarding disclosure of results in the event of the patient's death. Adults being tested for familial colorectal cancer were asked whether they want their exome sequencing results disclosed to another person in the event of their death prior to receiving the results. Of 78 participants, 92% designated an individual and 8% declined to. Further research will help refine practices for informed consent.

The American Journal of Bioethics, Volume 12, Issue 10, Page 9-10, October 2012.

The primary goal of the present research was to determine the order of swimmers on a mixed relay team that would ensure the best performance in the Fédération Internationale de Natation World Championships held in Kazan, Budapest, and Gwangju. The data were obtained from database websites for the 4 × 100 m freestyle and 4 × 100 m medley official results,1 including 660 records from 188 entries of finals and 472 preliminary events. The results showed that the fastest swimmers were (...) located primarily in the first or second positions of the freestyle relay. The most successful gender strategy for the 4 × 100 m freestyle and for the 4 × 100 m medley relays was the order male-male-female-female, although no statistical differences were found for the medley relays. In the 4 × 100 m freestyle, the second and third relay legs had a statistical effect on the total relay time, whereas in the 4 × 100 m medley, all four relay legs had a statistical effect on the final performance, the weight of the four strokes being different in heats with respect to the final round. Also, a later position of the first female swimmer or the consecutive position of two female swimmers in the team order significantly affected the relay performance in specific events. Mixed relay events appeared to present specific strategies in comparison to traditional male- or female-only relay lineups. (shrink)

There is growing interest in teaching computational thinking to preschool children given evidence that they are able to understand and use CT concepts. One of the concepts that is central in CT definitions, is the concept of control structures, but it is not clear which tools and activities are successful in teaching it to young learners. This work aims at providing a comprehensive overview of tools that enable preschool children to build programs that include control structures, and analyzing empirical evidence (...) of the usage of these tools to teach control structures to children between 3 and 6. It consists of three parts: systematic literature review to identify tools to teach CT to young children, analysis of tools characteristics and the possibilities that they offer to express control structures, and SLR to identify empirical evidence of successful teaching of control structures to young children using relevant tools. This work provides an understanding of the current state of the art and identifies areas that require future exploration. (shrink)

Giovanny Sartori, en su texto titulado ¿Qué es la democracia?, nos habla de las posibles definiciones de las que se puede sustentar la democracia. Así mismo se interroga ¿la teoría de la democracia es una, o es múltiples? ¿Muchas teorías sobre muchas democracias o una teoría sobre una democracia? La respuesta depende en gran parte del nivel de abstracción del discurso.1 Ante tal cuestión, Sartori sostiene la tesis unitaria. Por lo que, cree que las democracias se declaran como tales, al (...) comparar la teoría con la práctica en ellas, definir la democracia, muchas veces, se conflictúa al comparar los hechos descriptivos con lo prescriptivo. (shrink)

In this article, I argue that the growing phenomenon of lay ecclesial ministry is a hope-filled work of the Spirit leading the church into deeper reception of conciliar renewal. The upcoming plenary council's consideration of future directions for the church in Australia will have implications for the development of ecclesial ministry models. The experience of lay ecclesial ministry points to the future of how emerging models might look and function. In this article, I draw on the pneumatology of German theologian (...) Walter Kasper. For Kasper, the Spirit brings about the new, opens up the future and makes space for the flourishing of life. Kasper's theology of the Spirit can be illustrated in the changing face of ministry since Vatican II. In the light of this I propose a number of implications for deeper reception of lay ecclesial ministry in and for the life and mission of the Catholic Church in Australia. (shrink)

In this article, we have examined how Japan has supported ASEAN's economic integration through ODA and other diplomatic measures, and showed how Japan's engagements in ASEAN economic integration evolved over time. In addressing these issues, we took into account the growing influence of China's ascent in Southeast Asia, and assumed that Japan's China policy of mixed became explicit in Japan's ASEAN policy. The pronouncement of support for ASEAN integration, disbursement of aid to the region, forging of bilateral and regional FTAs/EPAs (...) with ASEAN, and its recent initiatives and proactive involvement in the Mekong regional development are indicative of Japan's reactive posture on China's growing influence in the region. Japanese diplomatic initiatives in ASEAN are intended, in part, to accommodate and balance China's increasing prominence in Southeast Asia. This explains the simultaneous existence of competitive and cooperative initiatives of the two countries with ASEAN. (shrink)