المؤلفون: Schwab, Marisa E, Brown, Julia EH, Lianoglou, Billie, Jin, Chengshi, Conroy, Patricia C, Gallagher, Renata C, Harmatz, Paul, MacKenzie, Tippi C

المصدر: Orphanet Journal of Rare Diseases. 17(1)

مصطلحات موضوعية: Genetics, Orphan Drug, Digestive Diseases, Clinical Research, Clinical Trials and Supportive Activities, Rare Diseases, Pediatric, Good Health and Well Being, Attitude, Clinical Trials, Phase I as Topic, Enzyme Replacement Therapy, Female, Fetal Therapies, Glycogen Storage Disease Type II, Humans, Lysosomal Storage Diseases, Parents, Pregnancy, Surveys and Questionnaires, Lysosomal storage disease, Mucopolysaccharidosis, Fetal therapy, Enzyme replacement therapy, Gene therapy, Patient attitudes, Clinical trial, ELSI (ethical, legal and social implications), ELSI, Other Medical and Health Sciences, Genetics & Heredity

وصف الملف: application/pdf

URL الوصول: https://escholarship.org/uc/item/79c7w0mv
https://escholarship.org/content/qt79c7w0mv/qt79c7w0mv.pdf

المؤلفون: Munung, Nchangwi Syntia, Nembaware, Victoria, de Vries, Jantina, Bukini, Daima, Tluway, Furahini, Treadwell, Marsha, Sangeda, Raphael Zozimus, Mazandu, Gaston, Jonas, Mario, Paintsil, Vivian, Nnodu, Obiageli E, Balandya, Emmanuel, Makani, Julie, Wonkam, Ambroise

مصطلحات موضوعية: Biological Sciences, Genetics, Pain Research, Clinical Research, Sickle Cell Disease, Rare Diseases, Hematology, Africa, ELSI (ethical, SickleInAfrica, and social issues), legal, registries, sickle cell disease, Clinical Sciences, Law

وصف الملف: application/pdf

URL الوصول: https://escholarship.org/uc/item/4hb3z8xq
https://escholarship.org/content/qt4hb3z8xq/qt4hb3z8xq.pdf

المؤلفون: Gal Zarchi, Maya Sherman, Omer Gady, Tomer Herzig, Ziv Idan, Dov Greenbaum

المصدر: Frontiers in Digital Health, Vol 4 (2023)

مصطلحات موضوعية: blockchain, ELSI (ethical, legal, and social implications), DNA database, big data, Medicine, Public aspects of medicine, RA1-1270, Electronic computers. Computer science, QA75.5-76.95

وصف الملف: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fdgth.2022.1028249/full; https://doaj.org/toc/2673-253X

URL الوصول: https://doaj.org/article/ae9d4749c5784e57ba4b77b499d10b09

المؤلفون: Vasiliki Rahimzadeh, Ge Peng, Mildred Cho

المصدر: Frontiers in Genetics, Vol 13 (2022)

مصطلحات موضوعية: stewardship, human genomics, ELSI (ethical, legal, and social implications), data governance, Genetics, QH426-470

وصف الملف: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fgene.2022.876869/full; https://doaj.org/toc/1664-8021

URL الوصول: https://doaj.org/article/2bf30c04048845d0b6864d6847966a56

المؤلفون: Bierwirth, Arrizabalaga, Polo

مصطلحات موضوعية: Applied Research Higher Education Institutions Privacy Artificial Intelligence ICT Public Engagement Autonomous Systems Impact Narrative Public Participation Awareness Raising Inclusivity Regional Development Change Lab Indicators Responsible Research & Innovation (RRI) Citizen Engagement Innovation Ecosystem Research Ethics Citizen Science Innovation Funding Research Integrity Co-creation Innovation Project Research Funding Community of Practice Innovation Systems Research Strategy Datasets Institutional Change RFO Data Protection Institutionalisation RPO Democracy Key Enabling Technologies Science Education Digitalisation Knowledge Production SME Discourse Knowledge Sharing Social Innovation Ecosystem Analysis KPI Standardisation Process Education Learning Stakeholder Involvement ELSI (Ethical Legal Social Impacts) Machine Learning STIR Entrepreneurship Open Access Technology Assessment Ethics Appraisal Open Data Transformation Evaluation Open Innovation Transformative Capacity Funding Criteria Open Science Transformative Leadership Funding Guidelines Organisational Change Universities Gender Equality Participatory Method … Governance Policy …

Relation: https://zenodo.org/communities/cochange2020project; https://zenodo.org/communities/eu; https://doi.org/10.5281/zenodo.7547449; https://doi.org/10.5281/zenodo.7547450; oai:zenodo.org:7547450

الاتاحة: https://doi.org/10.5281/zenodo.7547450

المؤلفون: Schmutzler, Rita K., Schmitz-Luhn, Björn, Borisch, Bettina, Devilee, Peter, Eccles, Diana, Hall, Per, Balmaña, Judith, Boccia, Stefania, Dabrock, Peter, Emons, Günter, Gaissmaier, Wolfgang, Gronwald, Jacek, Houwaart, Stefanie, Huster, Stefan, Kast, Karin, Katalinic, Alexander, Linn, Sabine C., Moorthie, Sowmiya, Pharoah, Paul, Rhiem, Kerstin, Spranger, Tade, Stoppa-Lyonnet, Dominique, Van Delden, Johannes Jozef Marten, Van Den Bulcke, Marc, Woopen, Christiane

المساهمون: Pathologie, Cancer

مصطلحات موضوعية: Breast cancer, ELSI ethical, legal, social implications, Evidencegenerating care, Risk-adjusted prevention, Surgery, Oncology

وصف الملف: application/pdf

Relation: https://dspace.library.uu.nl/handle/1874/448385

الاتاحة: https://dspace.library.uu.nl/handle/1874/448385

المؤلفون: Boccia, Stefania

المساهمون: Schmutzler, Rita K, Schmitz-Luhn, Björn, Borisch, Bettina, Devilee, Peter, Eccles, Diana, Hall, Per, Balmaña, Judith, Boccia, Stefania, Dabrock, Peter, Emons, Günter, Gaissmaier, Wolfgang, Gronwald, Jacek, Houwaart, Stefanie, Huster, Stefan, Kast, Karin, Katalinic, Alexander, Linn, Sabine C, Moorthie, Sowmiya, Pharoah, Paul, Rhiem, Kerstin, Spranger, Tade, Stoppa-Lyonnet, Dominique, van Delden, Johannes Jozef Marten, van den Bulcke, Marc, Woopen, Christiane

مصطلحات موضوعية: Breast cancer, ELSI ethical, legal, social implications, Evidence-generating care, Risk-adjusted prevention, Settore MED/42 - IGIENE GENERALE E APPLICATA

Relation: info:eu-repo/semantics/altIdentifier/pmid/35702492; info:eu-repo/semantics/altIdentifier/wos/WOS:000686247600001; volume:17; issue:2; firstpage:208; lastpage:223; numberofpages:16; issueyear:2022; journal:BREAST CARE; https://hdl.handle.net/10807/225910; info:eu-repo/semantics/altIdentifier/scopus/2-s2.0-85108600565

الاتاحة: https://hdl.handle.net/10807/225910
https://doi.org/10.1159/000517182

المؤلفون: Schmutzler, Rita K, Schmitz-Luhn, Björn, Borisch, Bettina, Devilee, Peter, Eccles, Diana, Hall, Per, Balmaña, Judith, Boccia, Stefania, Dabrock, Peter, Emons, Günter, Gaissmaier, Wolfgang, Gronwald, Jacek, Houwaart, Stefanie, Huster, Stefan, Kast, Karin, Katalinic, Alexander, Linn, Sabine C, Moorthie, Sowmiya, Pharoah, Paul, Rhiem, Kerstin, Spranger, Tade, Stoppa-Lyonnet, Dominique, van Delden, Johannes Jozef Marten, van den Bulcke, Marc, Woopen, Christiane

مصطلحات موضوعية: Breast cancer, ELSI ethical, legal, social implications, Evidence-generating care, Risk-adjusted prevention

وصف الملف: application/pdf

Relation: https://www.repository.cam.ac.uk/handle/1810/361033

الاتاحة: https://www.repository.cam.ac.uk/handle/1810/361033

المؤلفون: Nchangwi Syntia Munung, Victoria Nembaware, Jantina de Vries, Daima Bukini, Furahini Tluway, Marsha Treadwell, Raphael Zozimus Sangeda, Gaston Mazandu, Mario Jonas, Vivian Paintsil, Obiageli E. Nnodu, Emmanuel Balandya, Julie Makani, Ambroise Wonkam

المصدر: Frontiers in Genetics, Vol 10 (2019)

مصطلحات موضوعية: sickle cell disease, registries, SickleInAfrica, ELSI (ethical, legal, and social issues), Genetics, QH426-470

وصف الملف: electronic resource

Relation: https://www.frontiersin.org/article/10.3389/fgene.2019.00943/full; https://doaj.org/toc/1664-8021

URL الوصول: https://doaj.org/article/dc59e4cb1a4c408c970ae599fa87826a

المؤلفون: Kiyoshi Shibata, 柴田 清

المصدر: まてりあ / Materia Japan. 2020, 59(4):179

المؤلفون: Marisa E. Schwab, Julia E. H. Brown, Billie Lianoglou, Chengshi Jin, Patricia C. Conroy, Renata C. Gallagher, Paul Harmatz, Tippi C. MacKenzie

المصدر: Orphanet Journal of Rare Diseases
Orphanet journal of rare diseases, vol 17, iss 1
Orphanet Journal of Rare Diseases, Vol 17, Iss 1, Pp 1-11 (2022)

مصطلحات موضوعية: Parents, ELSI (ethical, Clinical Trials and Supportive Activities, Lysosomal storage disease, Phase I as Topic, Rare Diseases, Gene therapy, Clinical Research, Pregnancy, Surveys and Questionnaires, legal and social implications), Genetics, Humans, Clinical Trials, Enzyme Replacement Therapy, Pharmacology (medical), Genetics (clinical), Pediatric, Genetics & Heredity, Fetal Therapies, Other Medical and Health Sciences, Clinical Trials, Phase I as Topic, Glycogen Storage Disease Type II, Research, General Medicine, Mucopolysaccharidosis, ELSI (ethical, legal and social implications), Clinical trial, Lysosomal Storage Diseases, Fetal therapy, Orphan Drug, Good Health and Well Being, Attitude, ELSI, Enzyme replacement therapy, Patient attitudes, Medicine, Female, Digestive Diseases

وصف الملف: application/pdf

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::dbd1709428404d3e9d9311945da7a9c0
http://europepmc.org/articles/PMC8800365

المؤلفون: Kotaro KURODA, 黒田 光太郎

المصدر: Proceedings of Annual Conference of Japanese Society for Engineering Education. 2020, :12

المؤلفون: Vasiliki Rahimzadeh, Ge Peng, Mildred Cho

مصطلحات موضوعية: Genetics, Genetic Engineering, Biomarkers, Developmental Genetics (incl. Sex Determination), Epigenetics (incl. Genome Methylation and Epigenomics), Gene Expression (incl. Microarray and other genome-wide approaches), Genome Structure and Regulation, Genomics, Genetically Modified Animals, Livestock Cloning, Gene and Molecular Therapy, stewardship, human genomics, ELSI (ethical, legal, and social implications), data governance, cloud, Delphi

Relation: https://figshare.com/articles/dataset/DataSheet1_A_mixed-methods_protocol_to_develop_and_validate_a_stewardship_maturity_matrix_for_human_genomic_data_in_the_cloud_docx/21332025

الاتاحة: https://doi.org/10.3389/fgene.2022.876869.s001
https://figshare.com/articles/dataset/DataSheet1_A_mixed-methods_protocol_to_develop_and_validate_a_stewardship_maturity_matrix_for_human_genomic_data_in_the_cloud_docx/21332025

المؤلفون: Moreno Muñoz, Miguel

مصطلحات موضوعية: Proyecto Genoma Humano, Cribado genético, Genética forense, Genómica, Biopolítica, CTS (ciencia, tecnología y sociedad), ELSI (implicaciones éticas, sociales y legales), Human Genome Project, Genetic screening, Forensic genetics, genomics, Biopolitics, ELSI (ethical, social and legal implications), STS (science, technology and society)

وصف الملف: application/pdf

Relation: Moreno Muñoz, M. Impacto social de las biotecnologías y del Proyecto Genoma Humano. En: Ciclo "Debates bioéticos en una sociedad plural", Ateneo de La Laguna, 11 de mayo de 2005. [http://hdl.handle.net/10481/23340]; http://hdl.handle.net/10481/23340

الاتاحة: http://hdl.handle.net/10481/23340

المؤلفون: Wesley Wei-Wen Hsiao, Chien-Te Fan, Jui-Chu Lin

المصدر: Computational and Structural Biotechnology Journal, Vol 17, Iss, Pp 1135-1142 (2019)
Computational and Structural Biotechnology Journal

مصطلحات موضوعية: EGF, Ethical Governance Framework, NHI, National Health Insurance, lcsh:Biotechnology, Framework, P3G, Public Population Project in Genomics and Society, Biophysics, Declaration, Review Article, Biochemistry, Incidental finding, MRI, Magnetic Resonance Imaging, IRBs, Institutional Review Boards, 03 medical and health sciences, NIH, National Institutes of Health, 0302 clinical medicine, GP, General Practitioners, Structural Biology, Informed consent, lcsh:TP248.13-248.65, Political science, UNESCO, United Nations Education Scientific and Cultural Organization, Genetics, GNC, German National Cohort, Obligation, 030304 developmental biology, 0303 health sciences, The WMA Declaration of Taipei (2016), business.industry, Corporate governance, TWB, Taiwan Biobank, Stakeholder, ESC, European Society of Cardiology, Bioethics, WMA, World Medical Association, ELSI, Ethical, Legal and Social Implications, Public relations, Biobank, Transparency (behavior), Computer Science Applications, Biobanks, 030220 oncology & carcinogenesis, IF, Incidental Findings, business, Biotechnology

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::5b99d068b0df5003fcf0662192f885bc
https://doi.org/10.1016/j.csbj.2019.07.006

المؤلفون: Schmutzler R.K. (11264466), Schmitz-Luhn B. (11264469), Borisch B. (11264472), Devilee P. (11264475), Eccles D. (11264478), Hall P. (11264481), Balmaña J. (11264484), Boccia S. (11264487), Dabrock P. (11264490), Emons G. (11264493), Gaissmaier W. (11264496), Gronwald J. (11264499), Houwaart S. (11264502), Huster S. (11264505), Kast K. (11264508), Katalinic A. (11264511), Linn S.C. (11264514), Moorthie S. (11264517), Pharoah P. (11264520), Rhiem K. (7064756), Spranger T. (11264523), Stoppa-Lyonnet D. (11264526), vanDelden J.J.M. (8279208), vandenBulcke M. (11264529), Woopen C. (11264532)

مصطلحات موضوعية: Medicine, Risk-adjusted prevention, Breast cancer, Evidence-generating care, ELSI ethical, legal, social implications

Relation: https://figshare.com/articles/dataset/Supplementary_Material_for_Risk-Adjusted_Cancer_Screening_and_Prevention_RiskAP_Complementing_Screening_for_Early_Disease_Detection_by_a_Learning_Screening_Based_on_Risk_Factors/15154614

الاتاحة: https://doi.org/10.6084/m9.figshare.15154614.v1

المؤلفون: Tohru MASUI, Yoko TAKADA, 増井 徹, 高田 容子

المصدر: YAKUGAKU ZASSHI. 2003, 123(3):107

المؤلفون: Lu, L.Y.Y., Lin, B.J.Y., Liu, J.S., Yu, C.-Y.

مصطلحات موضوعية: Citation network, EHS (environment, health, and safety), ELSI (ethical, legal, and social issues), Main path analysis, Nanotechnology, Research front, Societal issues

وصف الملف: 208 bytes; text/html

Relation: Journal of Business Ethics, Volume 109, Issue 4, Page: 583 - 598; http://ir.lib.ntust.edu.tw/handle/987654321/46365; http://ir.lib.ntust.edu.tw/bitstream/987654321/46365/2/index.html

الاتاحة: http://ir.lib.ntust.edu.tw/handle/987654321/46365
http://ir.lib.ntust.edu.tw/bitstream/987654321/46365/2/index.html

المؤلفون: Lu, Louis Y.Y., Lin, Bruce J.Y., Liu, John S., Yu, Chang-Yung

مصطلحات موضوعية: Nanotechnology, EHS (environment, health, and safety), ELSI (ethical, legal, and social issues), Societal issues, Main path analysis, Citation network, Research front

Relation: JOURNAL OF BUSINESS ETHICS Volume:109 Issue:4 Pages:583-598; http://ir.lib.ntust.edu.tw/handle/987654321/38667; http://ir.lib.ntust.edu.tw/bitstream/987654321/38667/-1/index.html

الاتاحة: http://ir.lib.ntust.edu.tw/handle/987654321/38667
https://doi.org/10.1007/s10551-012-1432-1
http://ir.lib.ntust.edu.tw/bitstream/987654321/38667/-1/index.html