Paediatric genomic research raises particularly challenging questions on whether and under what circumstances to return research results. In the paediatric context, decision-making is guided by the best interests of the child framework, as enshrined in the 1989 international Convention on the Rights of the Child. According to this Convention, rights and responsibilities are shared between children, parents, researchers, and the state. These "relational" obligations are further complicated in the context of genetic research.
This article examines the complex and contemporary issue of the return of research results in biobanks. After suggesting the exclusion of some adjacent issues usually flanking the debate, this article reviews the current practices of biobanks on the disclosure of research results to participants. It then focuses more specifically on the debate in the literature before turning to a review of the typology of recent reforms being put forward.
In 2009, Time magazine named “biobanks” as one of the 10 ideas changing the world. These organized collections of human biological material and associated data have been identified as “vital research tools in the drive to uncover the consequences of human health and disease.” Since their inception, however, biobanks have faced ethical and legal challenges. Whether these pertain to informed consent, access by researchers, commercialization, confidentiality, or governance, biobanks must continue to address jurisdictional matters, operational difficulties, and normative frameworks that (...) strive to stay abreast of current scientific innovation. Yet, with some biobanks now having completed their recruitment objectives and with research currently being performed on their data and samples, one topic has become the focus of ongoing debates: the return of research results to participants. (shrink)
In an era of unrivalled sequencing, computation and networking capability, international sharing of genomic samples and data is becoming a modus operandi for modern medical research. Researchers are collaborating to establish large collections with global scale. Having never before set foot outside the cell, the molecules that shape us are being digitized and launched across the globe. Protecting individual privacy interests in this information is a central challenge of the genomic research era. This article reviews international privacy norms governing human (...) genomic biobanks and databases. It will not directly consider biobanks established for other health-related purposes, such as screening or therapy. A genomic biobank is “a hybrid infrastructure,” an organized collection of human biological material combined with associated health information: physical measurements, outcome data in medical records, and epidemiological information, as well as genomic data derived from the samples. (shrink)
In this paper, we outline the policy implications of mobile health research conducted at the international level. We describe the manner in which such research may have an international dimension and argue that it is not likely to be excluded from conventionally applicable international regulatory tools. We suggest that closer policy attention is needed for this rapidly proliferating approach to health research.
The Perfect Guide to the Sciences of the Qurʾān, by Imām Jalāl-al-Dīn ʿAbd al-Raḥmān al-Suyūṭī, vol. 1. Translated by Ḥamid Algar, Michael Schub, and Ayman Abdel Ḥaleem; reviewed by Osman S. A. Ismaʿīl A. al-Bīlī. The Great Books of Islamic Civilization. Reading, UK: Garnett Publishing, 2011. Pp. xxxiii + 301. £60.
The DAMA project is an observatory for rare processes and it is operative deep underground at the Gran Sasso National Laboratory of the I.N.F.N. In particular, the DAMA/LIBRA (Large sodium Iodide Bulk for RAre processes) set-up consists of highly radiopure NaI(Tl) detectors for a total sensitive exposed mass of ≃250 kg. Recent results, obtained by this set-up by exploiting the model independent annual modulation signature of Dark Matter (DM) particles, have confirmed and improved those obtained by the former DAMA/NaI experiment. (...) A model independent evidence for the presence of Dark Matter particles in the galactic halo is cumulatively obtained at 8.2 σ C.L. No systematics or side reactions able to account for the measured modulation amplitude and to contemporaneously satisfy all the many specific requirements of the signature have been found or suggested by anyone over more than a decade. An example of one of the many possible model dependent corollary quests for the candidate particles and for the related astrophysical, nuclear and particle physics scenarios is presented considering the whole cumulative exposure. Future perspectives are shortly addressed. (shrink)
The complex hexaploid wheat genome offers many challenges for genomics research. Expressed sequence tags facilitate the analysis of gene-coding regions and provide a rich source of molecular markers for mapping and comparison with model organisms. The objectives of this study were to construct a high-density EST chromosome bin map of wheat homoeologous group 2 chromosomes to determine the distribution of ESTs, construct a consensus map of group 2 ESTs, investigate synteny, examine patterns of duplication, and assess the colinearity with rice (...) of ESTs assigned to the group 2 consensus bin map. A total of 2600 loci generated from 1110 ESTs were mapped to group 2 chromosomes by Southern hybridization onto wheat aneuploid chromosome and deletion stocks. A consensus map was constructed of 552 ESTs mapping to more than one group 2 chromosome. Regions of high gene density in distal bins and low gene density in proximal bins were found. Two interstitial gene-rich islands flanked by relatively gene-poor regions on both the short and long arms and having good synteny with rice were discovered. The map locations of two ESTs indicated the possible presence of a small pericentric inversion on chromosome 2B. Wheat chromosome group 2 was shown to share syntenous blocks with rice chromosomes 4 and 7. (shrink)
Pensamiento y acción se unen y refuerzan mutuamente en el feminismo. Las consignas escritas de las pancartas y coreadas en las manifestaciones y los textos de las teóricas no son mundos separados. Por el contrario, son dos formas de la fuerza transformadora del mundo que llamamos feminismo. ¿Qué puede ser mejor para festejar los 30 años de la Colección Feminismos que un libro aniversario en el que más de 40 autoras y autores de reconocido prestigio reflexionan a partir de lemas (...) y citas que nos son familiares? En los últimos años, caracterizados por un nuevo auge del movimiento, estos lemas y citas circulan por las redes sociales y acompañan las movilizaciones del 8 de marzo y de otros momentos clave de las reivindicaciones de las mujeres ante la injusticia patriarcal. (shrink)
Maternal opioid use during pregnancy is a growing national problem and can lead to newborns developing neonatal opioid withdrawal syndrome soon after birth. Recent data demonstrates that nearly every 15 min a baby is born in the United States suffering from NOWS. The primary treatment for NOWS is opioid replacement therapy, commonly oral morphine, which has neurotoxic effects on the developing brain. There is an urgent need for non-opioid treatments for NOWS. Transcutaneous auricular neurostimulation, a novel and non-invasive form of (...) electrostimulation, may serve as a promising alternative to morphine. tAN is delivered via a multichannel earpiece electrode worn on and around the left ear, targeting two cranial nerves—the vagus and trigeminal nerves. Prior research suggests that auricular neurostimulation exerts an anxiolytic effect on the body by releasing endogenous opioids and reduces withdrawal symptoms in adults actively withdrawing from opioids. In this first-in-human prospective, open-label trial, we investigated tAN as an adjuvant to morphine therapy in eight infants >33 weeks gestational age suffering from NOWS and receiving oral morphine treatment. Infants received tAN for 30 min 1 h before receiving a morphine dose. tAN was delivered at 0.1 mA below perception intensity at two different nerve targets on the ear: Region 1, the auricular branch of the vagus nerve; and Region 2, the auriculotemporal nerve. tAN was delivered up to four times daily for a maximum of 12 days. The primary outcome measures were safety [heart rate monitoring, Neonatal Infant Pain Scale, and skin irritation] and morphine length of treatment. tAN was well-tolerated and resulted in no unanticipated adverse events. Comparing to the national average of 23 days, the average oral morphine LOT was 13.3 days and the average LOT after tAN initiation was 7 days. These preliminary data suggest that tAN is safe and may serve as a promising alternative adjuvant for treating NOWS and reducing the amount of time an infant receives oral morphine. (shrink)
In his book on Karl Barth Professor T. F. Torrance spoke at one point of ‘the great watershed of modern theology’. ‘There are,’ he wrote, 1 ‘two basic issues here. On the one hand, it is the very substance of the Christian faith that is at stake, and on the other hand, it is the fundamental nature of scientific method, in its critical and methodological renunciation of prior understanding, that is at stake. This is the great watershed of modern theology: (...) either we take the one way or the other – there is no third alter native… one must go either in the direction taken by Barth or in the direction taken by Bultmann.’. (shrink)
In recent years the writings of Ludwig Wittgenstein have received much attention from philosophers in general and especially from philosophers interested in religion; and there is no doubt that Wittgenstein's legacy of thought is both highly suggestive and highly problematical. It seems likely, however, that the vogue which Wittgenstein now enjoys owes not a little to his peculiar place in the development of modern philosophy and, in particular, of that empiricist tradition in philosophy which stems from what has been called (...) the revolution in philosophy in the early decades of the present century. (shrink)
Mezhepler, İslam düşünce tarihinin -tenkid edilse dahi- bir parçasıdırlar. Bu oluşumların sâlikleri arasında onaylanması zor bazı olayların vuku bulduğu tarihi bir hakikattir. Bununla beraber mezkûr teşekküllerin İslam düşünce dünyasının oluşumuna büyük katkı sağladıkları da su götürmez bir gerçektir. Zira her farklılık beraberinde yeni tezleri doğurmuş ve her tez de peşinden anti-tezler geliştirmiştir. Fikri hareketlilikler de İslam düşüncesini başka bir medeniyete nasip olmayacak bir kültürel zenginlikle taçlandırmıştır. Bu meyanda Hâricîler, İslam düşünce tarihinin ilk ortaya çıkan oluşumudur. Hâricîler tarihi süreçte çeşitli etkenlerle (...) önce kendi içinde gruplara ayrılmış ve daha sonra bu gruplardan sadece İbâzîler günümüze kadar varlıklarını devam ettirmişlerdir. Teşekkül dönemlerinden itibaren Hâricîler entelektüel bir birikimden daha çok kılıç-kalkanla meşhur olmuşlardır. Bu durum onların ilmî faaliyetlere yeterince zaman ayırmalarını da engellemiştir. Bu sebeple tarihi süreçte oluşmuş olan Hâricî literatür diğer teşekküllere göre son derece azdır. Ancak Hâricîlerle aralarında bazı fikri yakınlıklar bulunsa da bu mevzuda İbâzîleri ayrı değerlendirmek daha sağlıklı sonuçlar elde etmenin yolunu açacaktır. Zira kaynaklarda Hâricî kategorisinde zikredilen eserlerin neredeyse tamamı İbâzîlere aittir. Ayrıca İbâzîler çoğunlukla Hâricîlerle beraber ele alınıp bir ayırıma gitmeden değerlendirilerek ilmi literatürlerinin az olduğu ifade edilmektedir. Hâlbuki nüfuslarıyla kıyaslandığında ortaya koydukları eserlerin azımsanmayacak miktarlarda olduğunu ifade etmek mümkündür. Yapılan taramalarda -son zamanlarda sınırlı miktarda bazı araştırmalar yapılmış olsa da- İbâzîler hakkında yapılan çalışmaların ülkemizde yeterli miktarda olmadığı akademik camiada malum olan bir vakıadır. Binaenaleyh bu araştırma, gerek İbâzî tefsir alanında çalışmalar yapacak araştırmacılara bir katkı sağlamak gerekse İslam toplumunun bir parçası olan İbâzîlerle ilgili ülkemizde eksikliği hissedilen araştırmalara bir yenisini eklemek gayesiyle yapılmıştır. Dolayısıyla bu çalışmada Hâricî ve İbâzî grupların tarihi süreçte bugüne kadar oluşturdukları tefsir literatürlerinin ele alınıp tanıtılması hedeflenmiştir. (shrink)
In his article ‘Professor Bartley's Theory of Rationality and Religious Belief’ Mr W. D. Hudson has brought considerable clarification to the rather confused situation occasioned by Professor W. W. Bartley's book The Retreat to Commitment and its subsequent discussion; but the process can, I think, be carried still further.
It is a curious fact that the much maligned ontological argument to prove the existence of God has in recent times enjoyed a revival of interest to which even Karl Barth, the arch-enemy of natural theology has contributed; but since the revival of interest has appared in a wide diversity of intellectual contexts, both philosophical and theological, the revival is itself almost as problematic as the argument itself.
El pensamiento del autor [Francisco Romero], orientándose en la dirección fenomenológico- axiológica y espiritualista de Husserl, Scheler, Hartmann y también de Ortega, quiere alcanzar una visión propia del hombre; bien que por la misma limitación del método fenomenológico adoptado, su indagación se detenga casi exclusivamente en la actividad y manifestaciones del hombre, en su aparecer más que en su ser estrictamente tal. He aquí, resumida suscíntamente, la obra. Lo que constituye al hombre es la intencionalidad: la polaridad sujetoobjeto. Tal carácter (...) intencional se revela ante todo en el conocimiento y, dentro de éste, principalmente en el juicio. La intencionalidad volítiva o afectiva se estructura bajo la dirección de la intencionalidad cognoscitiva, a la que Romero confiere la supremacía. A medida que se perfecciona la intencionalidad, se acrecienta también la individualidad, hasta alcanzar en la intencionalidad del hombre la conciencia de sí. Esta intencionalidad, pre-espírítual, propia y constitutiva del hombre, no es salida o trascendencia perfecta, pues siempre encierra un regreso al operante : es un éxodo para retornar al sujeto. En este punto R. retorna uno de sus ternas favoritos: la cultura, que se constituye también por la intencionalidad, pero en función no de objeto sino de realización de valores. La cultura no es sino la modificación del ser natural por la actividad intencional valorante. R., se detiene en largos análisis sobre la intencionalidad cultural individual y social y sus relaciones, en la díreccíón de H. Freyer y M. Scheler, aunque siempre buscando elaborar una explicación propia. (shrink)
Excerpt from Essai sur la Vie Et le Caractere de J.-J. Rousseau Montmorency, que j avais a ma porte, et comme s'il n'y avait des vieillards qu'a Paris, et que partout ailleurs ils fussent hors d'etat de vivre. About the Publisher Forgotten Books publishes hundreds of thousands of rare and classic books. Find more at www.forgottenbooks.com This book is a reproduction of an important historical work. Forgotten Books uses state-of-the-art technology to digitally reconstruct the work, preserving the original format whilst (...) repairing imperfections present in the aged copy. In rare cases, an imperfection in the original, such as a blemish or missing page, may be replicated in our edition. We do, however, repair the vast majority of imperfections successfully; any imperfections that remain are intentionally left to preserve the state of such historical works. (shrink)