Bringing access and benefit sharing into the digital age

Reading and writing DNA is now possible with an unprecedented speed and ease. Until recently, the global political and legal instruments regulating genetic resources globally exclusively focused on access to physical genetic resources without considering possible consequences of their digitization. Following significant tensions in the various international forums addressing access and benefit sharing of genetic resources, we advocate here a new Multi-stakeholder Committee on the Governance of Digital Sequence Information, dedicated to solving governance issues associated with digitization of genetic resources. This body will constitute a transversal and inclusive tool that will facilitate long-term coherence in all policy sectors dealing with genetic resources.

ASSESSMENT STUDIES RELIGIOUS EDUCATIONAL EDUCATION MADRASAH DINIYAH TAKMILIYAH (MDT) IN HONG KONG

EnglishThis study describes the pilot project of religious education in the form of Madrasah Diniyah Takmiliyah (MDT) in Hong Kong. The findings show that Islamic Religious Education in HK has developed both in the form of organizations and Islamic teaching circles (Majelis Taklim). However their roles are considered limited, for they only provide religious education for adults and for children. This situation is due to the lack of competent teachers of Islamic subjects. Islamic Religious Education for children is available at the Consulate General office although the supporting factors are still limited. To boost further development, a stakeholder committee of the madrasah has been formed by taking into account all potentials and opportunities. IndonesiaStudi ini mendeskripsikan rintisan pendidikan keagamaan Madrasah Diniyah Takmiliyah (MDT) di Hong Kong. Temuan penelitian menunjukan bahwa perkembangan Pendidikan Keagamaan di HK cukup menggembirakan terbukti banyaknya lembaga Pendidikan Keagamaan baik dalam bentuk organisasi maupun Majelis Taklim yang kegiatannya cukup semarak. Namun peranannya dalam pendidikan keagamaan Islam masih terbatas, baik untuk orang dewasa maupun untuk anak-anak. Karena kurangnya tenaga ustadz yang memiliki kompetensi di bidang agama. Walaupun Pendidikan Keagamaan Islam bagi anak-anak telah tersedia di KJRI, namun kondisinya masih terbatas. Oleh karena itu berdasarkan peluang dan potensi yang tersedia, telah disepakati adanya rintisan Madrasah Diniyah Takmiliyah yang diikuti komitmen (agreement) dengan terbentuknya stackeholder atau tim penyelenggara rintisan Madrasah Diniyah Takmiliyah di Hong Kong.

Assessing Patient Preferences for the Benefits and Risks of Treating for Acute Myeloid Leukemia (AML): A Pilot Study

Introduction:Acute Myeloid Leukemia (AML) is a blood cancer which progresses rapidly in the absence of treatment. There have been few advances in the treatment of AML over the last three decades. In 2015 the Leukemia and Lymphoma Society (LLS) initiated a research program to assess patient preferences for AML treatments. The aim of this research was to promote patient-focused drug development and inform future regulatory decisions. We sought to develop and pilot a patient-centered survey instrument to assess patient preferences for the benefits and risks of AML treatments. Methods: Development was informed by a targeted literature review and engagement with an expert stakeholder committee (n=12) to guide the clinical accuracy and relevance of the survey instrument. A community stakeholder committee, consisting of patients with AML and caregivers (n=15), provided information about their experiences with AML and various treatments. They also engaged in pretest interviews to test comprehension and ensure it captured the patient experience. A discrete-choice experiment (DCE) was developed spanning 5 benefits and risks, including event-free survival (EFS), complete remission (CR), time in hospital, short-term side effects, and long-term side effects. This DCE consisted of 16 pairs of hypothetical treatments, with participants being asked to identify which treatment they would prefer in each pair. Results of a pilot study with AML patients and caregivers were assessed by Z-score that were derived from a conditional logistic model regressing each attribute upon their choices. Results: The pilot included 18 patients and 8 caregivers with a mean age of 50 years (range=24-81). Most participants were college educated (n=22), Caucasian (n=19), privately insured (n=21), and employed (n=13). Participants valued CR the most (Z-score=7.95, p<0.001), followed by EFS (5.32, p<0.001). They were most averse to time in hospital (-3.41, p=0.001), followed by long-term side effects (-3.03, p=0.002) and short-term side effects (-1.99, p=0.047), which was marginally significant. Conclusions: This study demonstrates the value of rigorous community engagement in developing survey instruments to measure patient preferences. The results of this pilot study demonstrate the ability of our DCE to measure treatment preferences of AML patients and caregivers. Given this success, we are currently engaged in a nationally study where we will recruit a larger and more diverse sample. The results of this national study will inform drug developers and regulatory decision makers. Disclosures Seo: The Leukemia & Lymphoma Society: Research Funding. Voyard:The Leukemia & Lymphoma Society: Employment. O'Donoghue:The Leukemia & Lymphoma Society: Employment. Bridges:The Leukemia & Lymphoma Society: Research Funding.