Search

Your search keyword '"Kaye, Jane"' showing total 620 results
Start Over Author "Kaye, Jane"
620 results on '"Kaye, Jane"'

1. Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan: Scoping Review

Author

Hamakawa, Nao, Nakano, Rumiko, Kogetsu, Atsushi, Coathup, Victoria, Kaye, Jane, Yamamoto, Beverley Anne, and Kato, Kazuto

Subjects
Computer applications to medicine. Medical informatics, R858-859.7, Public aspects of medicine, RA1-1270
Abstract

BackgroundInformation and communication technology (ICT) has made remarkable progress in recent years and is being increasingly applied to medical research. This technology has the potential to facilitate the active involvement of research participants. Digital platforms that enable participants to be involved in the research process are called participant-centric initiatives (PCIs). Several PCIs have been reported in the literature, but no scoping reviews have been carried out. Moreover, detailed methods and features to aid in developing a clear definition of PCIs have not been sufficiently elucidated to date. ObjectiveThe objective of this scoping review is to describe the recent trends in, and features of, PCIs across the United States, the United Kingdom, and Japan. MethodsWe applied a methodology suggested by Levac et al to conduct this scoping review. We searched electronic databases—MEDLINE (Medical Literature Analysis and Retrieval System Online), Embase (Excerpta Medica Database), CINAHL (Cumulative Index of Nursing and Allied Health Literature), PsycINFO, and Ichushi-Web—and sources of grey literature, as well as internet search engines—Google and Bing. We hand-searched through key journals and reference lists of the relevant articles. Medical research using ICT was eligible for inclusion if there was a description of the active involvement of the participants. ResultsUltimately, 21 PCIs were identified that have implemented practical methods and modes of various communication activities, such as patient forums and use of social media, in the field of medical research. Various methods of decision making that enable participants to become involved in setting the agenda were also evident. ConclusionsThis scoping review is the first study to analyze the detailed features of PCIs and how they are being implemented. By clarifying the modes and methods of various forms of communication and decision making with patients, this review contributes to a better understanding of patient-centric involvement, which can be facilitated by PCIs. International Registered Report Identifier (IRRID)RR2-10.2196/resprot.7407

Published
2020
Full Text
View/download PDF

3. Discovery of drug–omics associations in type 2 diabetes with generative deep-learning models

Author

Allesøe, Rosa Lundbye, Lundgaard, Agnete Troen, Hernández Medina, Ricardo, Aguayo-Orozco, Alejandro, Johansen, Joachim, Nissen, Jakob Nybo, Brorsson, Caroline, Mazzoni, Gianluca, Niu, Lili, Biel, Jorge Hernansanz, Leal Rodríguez, Cristina, Brasas, Valentas, Webel, Henry, Benros, Michael Eriksen, Pedersen, Anders Gorm, Chmura, Piotr Jaroslaw, Jacobsen, Ulrik Plesner, Mari, Andrea, Koivula, Robert, Mahajan, Anubha, Vinuela, Ana, Tajes, Juan Fernandez, Sharma, Sapna, Haid, Mark, Hong, Mun-Gwan, Musholt, Petra B., De Masi, Federico, Vogt, Josef, Pedersen, Helle Krogh, Gudmundsdottir, Valborg, Jones, Angus, Kennedy, Gwen, Bell, Jimmy, Thomas, E. Louise, Frost, Gary, Thomsen, Henrik, Hansen, Elizaveta, Hansen, Tue Haldor, Vestergaard, Henrik, Muilwijk, Mirthe, Blom, Marieke T., ‘t Hart, Leen M., Pattou, Francois, Raverdy, Violeta, Brage, Soren, Kokkola, Tarja, Heggie, Alison, McEvoy, Donna, Mourby, Miranda, Kaye, Jane, Hattersley, Andrew, McDonald, Timothy, Ridderstråle, Martin, Walker, Mark, Forgie, Ian, Giordano, Giuseppe N., Pavo, Imre, Ruetten, Hartmut, Pedersen, Oluf, Hansen, Torben, Dermitzakis, Emmanouil, Franks, Paul W., Schwenk, Jochen M., Adamski, Jerzy, McCarthy, Mark I., Pearson, Ewan, Banasik, Karina, Rasmussen, Simon, and Brunak, Søren

Published
2023
Full Text
View/download PDF

4. Concordance of International Regulation of Pediatric Health Research

Author

Rothstein, Mark A., Patrinos, Dimitri, Brothers, Kyle B., Clayton, Ellen Wright, Joly, Yann, Zawati, Ma'n H., Andanda, Pamela, Arawi, Thalia, Castañeda, Mireya, Chalmers, Don, Chen, Haidan, Ghaly, Mohammed, Hatanaka, Ryoko, Hendriks, Aart C., Ho, Calvin W.L., Kaye, Jane, Krekora-Zając, Dorota, Lee, Won Bok, Mattsson, Titti, Nicolás, Pilar, Nnamuchi, Obiajulu, Rial-Sebbag, Emmanuelle, Siegal, Gil, Wathuta, Jane M., and Knoppers, Bartha Maria

Published
2023
Full Text
View/download PDF

5. Toward better governance of human genomic data

Author

O’Doherty, Kieran C, Shabani, Mahsa, Dove, Edward S, Bentzen, Heidi Beate, Borry, Pascal, Burgess, Michael M, Chalmers, Don, De Vries, Jantina, Eckstein, Lisa, Fullerton, Stephanie M, Juengst, Eric, Kato, Kazuto, Kaye, Jane, Knoppers, Bartha Maria, Koenig, Barbara A, Manson, Spero M, McGrail, Kimberlyn M, McGuire, Amy L, Meslin, Eric M, Nicol, Dianne, Prainsack, Barbara, Terry, Sharon F, Thorogood, Adrian, and Burke, Wylie

Subjects
Agricultural, Veterinary and Food Sciences, Biological Sciences, Bioinformatics and Computational Biology, Genetics, Agricultural Biotechnology, Human Genome, Clinical Research, Biotechnology, 1.5 Resources and infrastructure (underpinning), Underpinning research, Peace, Justice and Strong Institutions, Databases, Genetic, Genome, Human, Genomics, Humans, Internationality, Medical and Health Sciences, Developmental Biology, Agricultural biotechnology, Bioinformatics and computational biology
Abstract

In this Commentary, we argue that in line with the dramatic increase in the collection, storage, and curation of human genomic data for biomedical research, genomic data repositories and consortia have adopted governance frameworks to address the dual objectives of enabling wide access while protecting against possible harms. However, there are ongoing debates in the scientific community about the merits and limitations of different governance frameworks in achieving these twin aims; and indeed, best practices and points for consideration are notably absent when it comes to devising a governance framework for genomic databases. Based on our collective experience of devising and assessing governance frameworks, our Commentary identifies five key functions of “good governance” (or what makes “better governance”) and three areas where trade-offs should be considered when specifying policies within those functions. We apply these functions as a benchmark to describe, as an example, the governance frameworks of six large-scale international genomic projects.

Published
2021

6. Author Correction: Discovery of drug–omics associations in type 2 diabetes with generative deep-learning models

Author

Allesøe, Rosa Lundbye, Lundgaard, Agnete Troen, Hernández Medina, Ricardo, Aguayo-Orozco, Alejandro, Johansen, Joachim, Nissen, Jakob Nybo, Brorsson, Caroline, Mazzoni, Gianluca, Niu, Lili, Biel, Jorge Hernansanz, Leal Rodríguez, Cristina, Brasas, Valentas, Webel, Henry, Benros, Michael Eriksen, Pedersen, Anders Gorm, Chmura, Piotr Jaroslaw, Jacobsen, Ulrik Plesner, Mari, Andrea, Koivula, Robert, Mahajan, Anubha, Vinuela, Ana, Tajes, Juan Fernandez, Sharma, Sapna, Haid, Mark, Hong, Mun-Gwan, Musholt, Petra B., De Masi, Federico, Vogt, Josef, Pedersen, Helle Krogh, Gudmundsdottir, Valborg, Jones, Angus, Kennedy, Gwen, Bell, Jimmy, Thomas, E. Louise, Frost, Gary, Thomsen, Henrik, Hansen, Elizaveta, Hansen, Tue Haldor, Vestergaard, Henrik, Muilwijk, Mirthe, Blom, Marieke T., ‘t Hart, Leen M., Pattou, Francois, Raverdy, Violeta, Brage, Soren, Kokkola, Tarja, Heggie, Alison, McEvoy, Donna, Mourby, Miranda, Kaye, Jane, Hattersley, Andrew, McDonald, Timothy, Ridderstråle, Martin, Walker, Mark, Forgie, Ian, Giordano, Giuseppe N., Pavo, Imre, Ruetten, Hartmut, Pedersen, Oluf, Hansen, Torben, Dermitzakis, Emmanouil, Franks, Paul W., Schwenk, Jochen M., Adamski, Jerzy, McCarthy, Mark I., Pearson, Ewan, Banasik, Karina, Rasmussen, Simon, and Brunak, Søren

Published
2023
Full Text
View/download PDF

7. Survey of hereditary angioedema episodes and quality of life impairment through a patient-participatory registry

Author

Morioke, Satoshi, primary, Aikyo, Tatsuki, additional, Tanaka, Akio, additional, Matsubara, Daiki, additional, Saito, Ryo, additional, Iwamoto, Kazumasa, additional, Yamasaki, Chisato, additional, Kogetsu, Atsushi, additional, Hamakawa, Nao, additional, Isono, Moeko, additional, Yamamoto, Beverley Anne, additional, Matsumura, Yasushi, additional, Takeda, Toshihiro, additional, Manabe, Shiro, additional, Javaid, Muhammad Kassim, additional, Barrett, Joe, additional, Gray, Nathanael, additional, Kaye, Jane, additional, Kato, Kazuto, additional, and Hide, Michihiro, additional

Published
2024
Full Text
View/download PDF

8. Dynamic Consent : An Evaluation and Reporting Framework

Author

Prictor, Megan, Lewis, Megan A., Newson, Ainsley J., Haas, Matilda, Baba, Sachiko, Kim, Hannah, Kokado, Minori, Minari, Jusaku, Molnár-Gábor, Fruzsina, Yamamoto, Beverley, Kaye, Jane, and Teare, Harriet J. A.

Published
2020

10. Returning Results in Biobank Research: Global Trends and Solutions

Author

De Clercq, Eva, Kaye, Jane, Wolf, Susan M, Koenig, Barbara A, and Elger, Bernice S

Subjects
Biological Sciences, Biomedical and Clinical Sciences, Clinical Sciences, Genetics, Generic health relevance, Animals, Biological Specimen Banks, Humans, biobank, return of results, guidelines, dilemma, ethics, Genetics & Heredity, Clinical sciences
Abstract

In many countries around the world, biobanks have become crucial resources for the conduct of biomedical research, facilitating many kinds of research, including international collaborations. The focus of this special issue is on a looming ethical issue that has become a focus of debate-the return of research results and incidental findings to biobank participants. Although the articles in this issue do not provide a final answer to the ethical, legal, and social dilemmas that arise in the context of the return of results, the intent of the collection is to approach this issue from multiple perspectives and within an international context spanning the United Kingdom, continental Europe including Eastern Europe, the United States, and the Middle East.

Published
2017

14. The practice of active patient involvement in rare disease research using ICT: experiences and lessons from the RUDY JAPAN project

Author

Hamakawa, Nao, Kogetsu, Atsushi, Isono, Moeko, Yamasaki, Chisato, Manabe, Shirou, Takeda, Toshihiro, Iwamoto, Kazumasa, Kubota, Tomoya, Barrett, Joe, Gray, Nathanael, Turner, Alison, Teare, Harriet, Imamura, Yukie, Yamamoto, Beverley Anne, Kaye, Jane, Hide, Michihiro, Takahashi, Masanori P., Matsumura, Yasushi, Javaid, Muhammad Kassim, and Kato, Kazuto

Published
2021
Full Text
View/download PDF

15. A global reference for human genetic variation

Author

Auton, Adam, Abecasis, Gonçalo R, Altshuler, David M, Durbin, Richard M, Bentley, David R, Chakravarti, Aravinda, Clark, Andrew G, Donnelly, Peter, Eichler, Evan E, Flicek, Paul, Gabriel, Stacey B, Gibbs, Richard A, Green, Eric D, Hurles, Matthew E, Knoppers, Bartha M, Korbel, Jan O, Lander, Eric S, Lee, Charles, Lehrach, Hans, Mardis, Elaine R, Marth, Gabor T, McVean, Gil A, Nickerson, Deborah A, Schmidt, Jeanette P, Sherry, Stephen T, Wang, Jun, Wilson, Richard K, Barnes, Kathleen C, Beiswanger, Christine, Burchard, Esteban G, Bustamante, Carlos D, Cai, Hongyu, Cao, Hongzhi, Gerry, Norman P, Gharani, Neda, Gignoux, Christopher R, Gravel, Simon, Henn, Brenna, Jones, Danielle, Jorde, Lynn, Kaye, Jane S, Keinan, Alon, Kent, Alastair, Kerasidou, Angeliki, Li, Yingrui, Mathias, Rasika, Moreno-Estrada, Andres, Ossorio, Pilar N, Parker, Michael, Resch, Alissa M, Rotimi, Charles N, Royal, Charmaine D, Sandoval, Karla, Su, Yeyang, Sudbrak, Ralf, Tian, Zhongming, Tishkoff, Sarah, Toji, Lorraine H, Tyler-Smith, Chris, Via, Marc, Wang, Yuhong, Yang, Huanming, Yang, Ling, Zhu, Jiayong, Brooks, Lisa D, Felsenfeld, Adam L, McEwen, Jean E, Vaydylevich, Yekaterina, Duncanson, Audrey, Dunn, Michael, Schloss, Jeffery A, Garrison, Erik P, Min Kang, Hyun, Marchini, Jonathan L, and McCarthy, Shane

Subjects
Human Genome, Genetics, Biotechnology, 2.1 Biological and endogenous factors, Aetiology, Datasets as Topic, Demography, Disease Susceptibility, Exome, Genetic Variation, Genetics, Medical, Genetics, Population, Genome, Human, Genome-Wide Association Study, Genomics, Genotype, Haplotypes, High-Throughput Nucleotide Sequencing, Humans, INDEL Mutation, Internationality, Physical Chromosome Mapping, Polymorphism, Single Nucleotide, Quantitative Trait Loci, Rare Diseases, Reference Standards, Sequence Analysis, DNA, Genomes Project Consortium, General Science & Technology
Abstract

The 1000 Genomes Project set out to provide a comprehensive description of common human genetic variation by applying whole-genome sequencing to a diverse set of individuals from multiple populations. Here we report completion of the project, having reconstructed the genomes of 2,504 individuals from 26 populations using a combination of low-coverage whole-genome sequencing, deep exome sequencing, and dense microarray genotyping. We characterized a broad spectrum of genetic variation, in total over 88 million variants (84.7 million single nucleotide polymorphisms (SNPs), 3.6 million short insertions/deletions (indels), and 60,000 structural variants), all phased onto high-quality haplotypes. This resource includes >99% of SNP variants with a frequency of >1% for a variety of ancestries. We describe the distribution of genetic variation across the global sample, and discuss the implications for common disease studies.

Published
2015

16. Genetic studies of abdominal MRI data identify genes regulating hepcidin as major determinants of liver iron concentration

Author

Jennison, Christopher, Ehrhardt, Beate, Baum, Patrick, Schoelsch, Corinna, Freijer, Jan, Grempler, Rolf, Graefe-Mody, Ulrike, Hennige, Anita, Dings, Christiane, Lehr, Thorsten, Scherer, Nina, Sihinecich, Iryna, Pattou, Francois, Raverdi, Violeta, Caiazzo, Robert, Torres, Fanelly, Verkindt, Helene, Mari, Andrea, Tura, Andrea, Giorgino, Toni, Bizzotto, Roberto, Froguel, Philippe, Bonneford, Amelie, Canouil, Mickael, Dhennin, Veronique, Brorsson, Caroline, Brunak, Soren, De Masi, Federico, Gudmundsdóttir, Valborg, Pedersen, Helle, Banasik, Karina, Thomas, Cecilia, Sackett, Peter, Staerfeldt, Hans-Henrik, Lundgaard, Agnete, Nilsson, Birgitte, Nielsen, Agnes, Mazzoni, Gianluca, Karaderi, Tugce, Rasmussen, Simon, Johansen, Joachim, Allesøe, Rosa, Fritsche, Andreas, Thorand, Barbara, Adamski, Jurek, Grallert, Harald, Haid, Mark, Sharma, Sapna, Troll, Martina, Adam, Jonathan, Ferrer, Jorge, Eriksen, Heather, Frost, Gary, Haussler, Ragna, Hong, Mun-gwan, Schwenk, Jochen, Uhlen, Mathias, Nicolay, Claudia, Pavo, Imre, Steckel-Hamann, Birgit, Thomas, Melissa, Adragni, Kofi, Wu, Han, Hart, Leen't, Roderick, Slieker, van Leeuwen, Nienke, Dekkers, Koen, Frau, Francesca, Gassenhuber, Johann, Jablonka, Bernd, Musholt, Petra, Ruetten, Hartmut, Tillner, Joachim, Baltauss, Tania, Bernard Poenaru, Oana, de Preville, Nathalie, Rodriquez, Marianne, Arumugam, Manimozhiyan, Allin, Kristine, Engelbrechtsen, Line, Hansen, Torben, Hansen, Tue, Forman, Annemette, Jonsson, Anna, Pedersen, Oluf, Dutta, Avirup, Vogt, Josef, Vestergaard, Henrik, Laakso, Markku, Kokkola, Tarja, Kuulasmaa, Teemu, Franks, Paul, Giordano, Nick, Pomares-Millan, Hugo, Fitipaldi, Hugo, Mutie, Pascal, Klintenberg, Maria, Bergstrom, Margit, Groop, Leif, Ridderstrale, Martin, Atabaki Pasdar, Naeimeh, Deshmukh, Harshal, Heggie, Alison, Wake, Dianne, McEvoy, Donna, McVittie, Ian, Walker, Mark, Hattersley, Andrew, Hill, Anita, Jones, Angus, McDonald, Timothy, Perry, Mandy, Nice, Rachel, Hudson, Michelle, Thorne, Claire, Dermitzakis, Emmanouil, Viñuela, Ana, Cabrelli, Louise, Loftus, Heather, Dawed, Adem, Donnelly, Louise, Forgie, Ian, Pearson, Ewan, Palmer, Colin, Brown, Andrew, Koivula, Robert, Wesolowska-Andersen, Agata, Abdalla, Moustafa, McRobert, Nicky, Fernandez, Juan, Jiao, Yunlong, Robertson, Neil, Gough, Stephen, Kaye, Jane, Mourby, Miranda, Mahajan, Anubha, McCarthy, Mark, Shah, Nisha, Teare, Harriet, Holl, Reinhard, Koopman, Anitra, Rutters, Femke, Beulens, Joline, Groeneveld, Lenka, Bell, Jimmy, Thomas, Louise, Whitcher, Brandon, Wilman, Henry R., Parisinos, Constantinos A., Atabaki-Pasdar, Naeimeh, Kelly, Matt, Thomas, E. Louise, Neubauer, Stefan, Hingorani, Aroon D., Patel, Riyaz S., Hemingway, Harry, Franks, Paul W., Bell, Jimmy D., Banerjee, Rajarshi, and Yaghootkar, Hanieh

Published
2019
Full Text
View/download PDF

17. Survey of hereditary angioedema episodes and quality of life impairment through a patient-participatory registry.

Author

Satoshi Morioke, Tatsuki Aikyo, Akio Tanaka, Daiki Matsubara, Ryo Saito, Kazumasa Iwamoto, Chisato Yamasaki, Atsushi Kogetsu, Nao Hamakawa, Moeko Isono, Yamamoto, Beverley Anne, Yasushi Matsumura, Toshihiro Takeda, Shiro Manabe, Javaid, Muhammad Kassim, Barrett, Joe, Gray, Nathanael, Kaye, Jane, Kazuto Kato, and Michihiro Hide

Subjects
SHAME, ANGIONEUROTIC edema, QUALITY of life, PATIENT participation, FATIGUE (Physiology), RESEARCH personnel
Abstract

Hereditary angioedema (HAE) adversely affects patients' social and daily life significantly, and the disease burden is high. We recruited study participants from a patient-participatory registry, Rare and Undiagnosed Diseases Study (RUDY) Japan, to better understand the broader effect of HAE on patients' lives. Thirteen patients with HAE who registered between January 2019 and March 2021 completed an online questionnaire to record details of episodes and the angioedema quality of life (AE-QoL) questionnaire, in which they described the degree to which QoL was impaired. In all, 58 episodes were recorded, and selfreported data were accumulated from 24 returned AE-QoL questionnaires. The episodes peaked between approximately 06:00 and 07:00 h and between approximately 16:00 and 20:00 h. Of the 58 episodes, 38 (65.5%) were treated; 24 (63.2%) were treated at patients' homes. The drugs used in treatment were hospital-administered human C1-inhibitor preparations for 14 episodes and home-administered icatibant for 26 episodes. Time between episode onset and treatment initiation and between episode onset and full recovery tended to be shorter with icatibant treatment at home. The total AE-QoL score was 37.1 ± 22.9, indicating great impairment of QoL, with particularly high scores in the fatigue/mood and fears/shame domains. Most previous studies of real-world HAE episodes have been retrospective, based on patients' memories. Collaboration between patients and researchers revealed the location of episodes, the time of day they appeared, treatments for episodes, and the degree to which patients' QoL was impaired by HAE in this prospective study. [ABSTRACT FROM AUTHOR]

Published
2024
Full Text
View/download PDF

18. Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries

Author

Biasiotto, Roberta, primary, Viberg Johansson, Jennifer, additional, Alemu, Melaku Birhanu, additional, Romano, Virginia, additional, Bentzen, Heidi Beate, additional, Kaye, Jane, additional, Ancillotti, Mirko, additional, Blom, Johanna Maria Catharina, additional, Chassang, Gauthier, additional, Hallinan, Dara, additional, Jónsdóttir, Guðbjörg Andrea, additional, Monasterio Astobiza, Aníbal, additional, Rial-Sebbag, Emmanuelle, additional, Rodríguez-Arias, David, additional, Shah, Nisha, additional, Skovgaard, Lea, additional, Staunton, Ciara, additional, Tschigg, Katharina, additional, Veldwijk, Jorien, additional, and Mascalzoni, Deborah, additional

Published
2023
Full Text
View/download PDF

21. Discovery of biomarkers for glycaemic deterioration before and after the onset of type 2 diabetes: descriptive characteristics of the epidemiological studies within the IMI DIRECT Consortium

Author

Koivula, Robert W., Forgie, Ian M., Kurbasic, Azra, Viñuela, Ana, Heggie, Alison, Giordano, Giuseppe N., Hansen, Tue H., Hudson, Michelle, Koopman, Anitra D. M., Rutters, Femke, Siloaho, Maritta, Allin, Kristine H., Brage, Søren, Brorsson, Caroline A., Dawed, Adem Y., De Masi, Federico, Groves, Christopher J., Kokkola, Tarja, Mahajan, Anubha, Perry, Mandy H., Rauh, Simone P., Ridderstråle, Martin, Teare, Harriet J. A., Thomas, E. Louise, Tura, Andrea, Vestergaard, Henrik, White, Tom, Adamski, Jerzy, Bell, Jimmy D., Beulens, Joline W., Brunak, Søren, Dermitzakis, Emmanouil T., Froguel, Philippe, Frost, Gary, Gupta, Ramneek, Hansen, Torben, Hattersley, Andrew, Jablonka, Bernd, Kaye, Jane, Laakso, Markku, McDonald, Timothy J., Pedersen, Oluf, Schwenk, Jochen M., Pavo, Imre, Mari, Andrea, McCarthy, Mark I., Ruetten, Hartmut, Walker, Mark, Pearson, Ewan, Franks, Paul W., and for the IMI DIRECT Consortium

Published
2019
Full Text
View/download PDF

30. Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries (Preprint)

Author

Biasiotto, Roberta, primary, Viberg Johansson, Jennifer, additional, Alemu, Melaku Birhanu, additional, Romano, Virginia, additional, Bentzen, Heidi Beate, additional, Kaye, Jane, additional, Ancillotti, Mirko, additional, Blom, Johanna Maria Catharina, additional, Chassang, Gauthier, additional, Hallinan, Dara, additional, Jónsdóttir, Guðbjörg Andrea, additional, Monasterio Astobiza, Aníbal, additional, Rial-Sebbag, Emmanuelle, additional, Rodríguez-Arias, David, additional, Shah, Nisha, additional, Skovgaard, Lea, additional, Staunton, Ciara, additional, Tschigg, Katharina, additional, Veldwijk, Jorien, additional, and Mascalzoni, Deborah, additional

Published
2023
Full Text
View/download PDF

31. Public Preferences for Digital Health Data Sharing : Discrete Choice Experiment Study in 12 European Countries.

Author

Biasiotto, Roberta, Viberg Johansson, Jennifer, Alemu, Melaku Birhanu, Romano, Virginia, Bentzen, Heidi Beate, Kaye, Jane, Ancillotti, Mirko, Blom, Johanna Maria Catharina, Chassang, Gauthier, Hallinan, Dara, Jónsdóttir, Guðbjörg Andrea, Monasterio Astobiza, Aníbal, Rial-Sebbag, Emmanuelle, Rodríguez-Arias, David, Shah, Nisha, Skovgaard, Lea, Staunton, Ciara, Tschigg, Katharina, Veldwijk, Jorien, Mascalzoni, Deborah, Biasiotto, Roberta, Viberg Johansson, Jennifer, Alemu, Melaku Birhanu, Romano, Virginia, Bentzen, Heidi Beate, Kaye, Jane, Ancillotti, Mirko, Blom, Johanna Maria Catharina, Chassang, Gauthier, Hallinan, Dara, Jónsdóttir, Guðbjörg Andrea, Monasterio Astobiza, Aníbal, Rial-Sebbag, Emmanuelle, Rodríguez-Arias, David, Shah, Nisha, Skovgaard, Lea, Staunton, Ciara, Tschigg, Katharina, Veldwijk, Jorien, and Mascalzoni, Deborah

Abstract

BACKGROUND: With new technologies, health data can be collected in a variety of different clinical, research, and public health contexts, and then can be used for a range of new purposes. Establishing the public's views about digital health data sharing is essential for policy makers to develop effective harmonization initiatives for digital health data governance at the European level. OBJECTIVE: This study investigated public preferences for digital health data sharing. METHODS: A discrete choice experiment survey was administered to a sample of European residents in 12 European countries (Austria, Denmark, France, Germany, Iceland, Ireland, Italy, the Netherlands, Norway, Spain, Sweden, and the United Kingdom) from August 2020 to August 2021. Respondents answered whether hypothetical situations of data sharing were acceptable for them. Each hypothetical scenario was defined by 5 attributes ("data collector," "data user," "reason for data use," "information on data sharing and consent," and "availability of review process"), which had 3 to 4 attribute levels each. A latent class model was run across the whole data set and separately for different European regions (Northern, Central, and Southern Europe). Attribute relative importance was calculated for each latent class's pooled and regional data sets. RESULTS: A total of 5015 completed surveys were analyzed. In general, the most important attribute for respondents was the availability of information and consent during health data sharing. In the latent class model, 4 classes of preference patterns were identified. While respondents in 2 classes strongly expressed their preferences for data sharing with opposing positions, respondents in the other 2 classes preferred not to share their data, but attribute levels of the situation could have had an impact on their preferences. Respondents generally found the following to be the most acceptable: a national authority or academic research project as the data user; bein, The last two authors contributed equally., Governance of health data in cyberspace

Published
2023
Full Text
View/download PDF

32. Public Preferences for Digital Health Data Sharing:Discrete Choice Experiment Study in 12 European Countries

Author

Biasiotto, Roberta, Viberg Johansson, Jennifer, Alemu, Melaku Birhanu, Romano, Virginia, Bentzen, Heidi Beate, Kaye, Jane, Ancillotti, Mirko, Blom, Johanna Maria Catharina, Chassang, Gauthier, Hallinan, Dara, Jónsdóttir, Guðbjörg Andrea, Monasterio Astobiza, Aníbal, Rial-Sebbag, Emmanuelle, Rodríguez-Arias, David, Shah, Nisha, Skovgaard, Lea, Staunton, Ciara, Tschigg, Katharina, Veldwijk, Jorien, Mascalzoni, Deborah, Biasiotto, Roberta, Viberg Johansson, Jennifer, Alemu, Melaku Birhanu, Romano, Virginia, Bentzen, Heidi Beate, Kaye, Jane, Ancillotti, Mirko, Blom, Johanna Maria Catharina, Chassang, Gauthier, Hallinan, Dara, Jónsdóttir, Guðbjörg Andrea, Monasterio Astobiza, Aníbal, Rial-Sebbag, Emmanuelle, Rodríguez-Arias, David, Shah, Nisha, Skovgaard, Lea, Staunton, Ciara, Tschigg, Katharina, Veldwijk, Jorien, and Mascalzoni, Deborah

Abstract

BACKGROUND: With new technologies, health data can be collected in a variety of different clinical, research, and public health contexts, and then can be used for a range of new purposes. Establishing the public's views about digital health data sharing is essential for policy makers to develop effective harmonization initiatives for digital health data governance at the European level. OBJECTIVE: This study investigated public preferences for digital health data sharing. METHODS:A discrete choice experiment survey was administered to a sample of European residents in 12 European countries (Austria, Denmark, France, Germany, Iceland, Ireland, Italy, the Netherlands, Norway, Spain, Sweden, and the United Kingdom) from August 2020 to August 2021. Respondents answered whether hypothetical situations of data sharing were acceptable for them. Each hypothetical scenario was defined by 5 attributes ("data collector," "data user," "reason for data use," "information on data sharing and consent," and "availability of review process"), which had 3 to 4 attribute levels each. A latent class model was run across the whole data set and separately for different European regions (Northern, Central, and Southern Europe). Attribute relative importance was calculated for each latent class's pooled and regional data sets. RESULTS: A total of 5015 completed surveys were analyzed. In general, the most important attribute for respondents was the availability of information and consent during health data sharing. In the latent class model, 4 classes of preference patterns were identified. While respondents in 2 classes strongly expressed their preferences for data sharing with opposing positions, respondents in the other 2 classes preferred not to share their data, but attribute levels of the situation could have had an impact on their preferences. Respondents generally found the following to be the most accep

Published
2023

33. Genetic analysis of blood molecular phenotypes reveals common properties in the regulatory networks affecting complex traits

Author

Brown, Andrew A., Fernandez-Tajes, Juan J., Hong, Mun gwan, Brorsson, Caroline A., Koivula, Robert W., Davtian, David, Dupuis, Théo, Sartori, Ambra, Michalettou, Theodora Dafni, Forgie, Ian M., Adam, Jonathan, Allin, Kristine H., Caiazzo, Robert, Cederberg, Henna, De Masi, Federico, Elders, Petra J.M., Giordano, Giuseppe N., Haid, Mark, Hansen, Torben, Hansen, Tue H., Hattersley, Andrew T., Heggie, Alison J., Howald, Cédric, Jones, Angus G., Kokkola, Tarja, Laakso, Markku, Mahajan, Anubha, Mari, Andrea, McDonald, Timothy J., McEvoy, Donna, Mourby, Miranda, Musholt, Petra B., Nilsson, Birgitte, Pattou, Francois, Penet, Deborah, Raverdy, Violeta, Ridderstråle, Martin, Romano, Luciana, Rutters, Femke, Sharma, Sapna, Teare, Harriet, ‘t Hart, Leen, Tsirigos, Konstantinos D., Vangipurapu, Jagadish, Vestergaard, Henrik, Brunak, Søren, Franks, Paul W., Frost, Gary, Grallert, Harald, Jablonka, Bernd, McCarthy, Mark I., Pavo, Imre, Pedersen, Oluf, Ruetten, Hartmut, Walker, Mark, Adragni, Kofi, Allesøe, Rosa Lundbye L., Artati, Anna A., Arumugam, Manimozhiyan, Atabaki-Pasdar, Naeimeh, Baltauss, Tania, Banasik, Karina, Barnett, Anna L., Baum, Patrick, Bell, Jimmy D., Beulens, Joline W., Bianzano, Susanna B., Bizzotto, Roberto, Bonnefond, Amelie, Cabrelli, Louise, Dale, Matilda, Dawed, Adem Y., de Preville, Nathalie, Dekkers, Koen F., Deshmukh, Harshal A., Dings, Christiane, Donnelly, Louise, Dutta, Avirup, Ehrhardt, Beate, Engelbrechtsen, Line, Eriksen, Rebeca, Fan, Yong, Ferrer, Jorge, Fitipaldi, Hugo, Forman, Annemette, Fritsche, Andreas, Froguel, Philippe, Gassenhuber, Johann, Gough, Stephen, Graefe-Mody, Ulrike, Grempler, Rolf, Groeneveld, Lenka, Groop, Leif, Gudmundsdóttir, Valborg, Gupta, Ramneek, Hennige, Anita M.H., Hill, Anita V., Holl, Reinhard W., Hudson, Michelle, Jacobsen, Ulrik Plesner, Jennison, Christopher, Johansen, Joachim, Jonsson, Anna, Karaderi, Tugce, Kaye, Jane, Kennedy, Gwen, Klintenberg, Maria, Kuulasmaa, Teemu, Lehr, Thorsten, Loftus, Heather, Lundgaard, Agnete Troen T., Mazzoni, Gianluca, McRobert, Nicky, McVittie, Ian, Nice, Rachel, Nicolay, Claudia, Nijpels, Giel, Palmer, Colin N., Pedersen, Helle K., Perry, Mandy H., Pomares-Millan, Hugo, Prehn, Cornelia P., Ramisch, Anna, Rasmussen, Simon, Robertson, Neil, Rodriquez, Marianne, Sackett, Peter, Scherer, Nina, Shah, Nisha, Sihinevich, Iryna, Slieker, Roderick C., Sondertoft, Nadja B., Steckel-Hamann, Birgit, Thomas, Melissa K., Thomas, Cecilia Engel E., Thomas, Elizabeth Louise L., Thorand, Barbara, Thorne, Claire E., Tillner, Joachim, Tura, Andrea, Uhlen, Mathias, van Leeuwen, Nienke, van Oort, Sabine, Verkindt, Helene, Vogt, Josef, Wad Sackett, Peter W., Wesolowska-Andersen, Agata, Whitcher, Brandon, White, Margaret W., Adamski, Jerzy, Schwenk, Jochen M., Pearson, Ewan R., Dermitzakis, Emmanouil T., Viñuela, Ana, Brown, Andrew A., Fernandez-Tajes, Juan J., Hong, Mun gwan, Brorsson, Caroline A., Koivula, Robert W., Davtian, David, Dupuis, Théo, Sartori, Ambra, Michalettou, Theodora Dafni, Forgie, Ian M., Adam, Jonathan, Allin, Kristine H., Caiazzo, Robert, Cederberg, Henna, De Masi, Federico, Elders, Petra J.M., Giordano, Giuseppe N., Haid, Mark, Hansen, Torben, Hansen, Tue H., Hattersley, Andrew T., Heggie, Alison J., Howald, Cédric, Jones, Angus G., Kokkola, Tarja, Laakso, Markku, Mahajan, Anubha, Mari, Andrea, McDonald, Timothy J., McEvoy, Donna, Mourby, Miranda, Musholt, Petra B., Nilsson, Birgitte, Pattou, Francois, Penet, Deborah, Raverdy, Violeta, Ridderstråle, Martin, Romano, Luciana, Rutters, Femke, Sharma, Sapna, Teare, Harriet, ‘t Hart, Leen, Tsirigos, Konstantinos D., Vangipurapu, Jagadish, Vestergaard, Henrik, Brunak, Søren, Franks, Paul W., Frost, Gary, Grallert, Harald, Jablonka, Bernd, McCarthy, Mark I., Pavo, Imre, Pedersen, Oluf, Ruetten, Hartmut, Walker, Mark, Adragni, Kofi, Allesøe, Rosa Lundbye L., Artati, Anna A., Arumugam, Manimozhiyan, Atabaki-Pasdar, Naeimeh, Baltauss, Tania, Banasik, Karina, Barnett, Anna L., Baum, Patrick, Bell, Jimmy D., Beulens, Joline W., Bianzano, Susanna B., Bizzotto, Roberto, Bonnefond, Amelie, Cabrelli, Louise, Dale, Matilda, Dawed, Adem Y., de Preville, Nathalie, Dekkers, Koen F., Deshmukh, Harshal A., Dings, Christiane, Donnelly, Louise, Dutta, Avirup, Ehrhardt, Beate, Engelbrechtsen, Line, Eriksen, Rebeca, Fan, Yong, Ferrer, Jorge, Fitipaldi, Hugo, Forman, Annemette, Fritsche, Andreas, Froguel, Philippe, Gassenhuber, Johann, Gough, Stephen, Graefe-Mody, Ulrike, Grempler, Rolf, Groeneveld, Lenka, Groop, Leif, Gudmundsdóttir, Valborg, Gupta, Ramneek, Hennige, Anita M.H., Hill, Anita V., Holl, Reinhard W., Hudson, Michelle, Jacobsen, Ulrik Plesner, Jennison, Christopher, Johansen, Joachim, Jonsson, Anna, Karaderi, Tugce, Kaye, Jane, Kennedy, Gwen, Klintenberg, Maria, Kuulasmaa, Teemu, Lehr, Thorsten, Loftus, Heather, Lundgaard, Agnete Troen T., Mazzoni, Gianluca, McRobert, Nicky, McVittie, Ian, Nice, Rachel, Nicolay, Claudia, Nijpels, Giel, Palmer, Colin N., Pedersen, Helle K., Perry, Mandy H., Pomares-Millan, Hugo, Prehn, Cornelia P., Ramisch, Anna, Rasmussen, Simon, Robertson, Neil, Rodriquez, Marianne, Sackett, Peter, Scherer, Nina, Shah, Nisha, Sihinevich, Iryna, Slieker, Roderick C., Sondertoft, Nadja B., Steckel-Hamann, Birgit, Thomas, Melissa K., Thomas, Cecilia Engel E., Thomas, Elizabeth Louise L., Thorand, Barbara, Thorne, Claire E., Tillner, Joachim, Tura, Andrea, Uhlen, Mathias, van Leeuwen, Nienke, van Oort, Sabine, Verkindt, Helene, Vogt, Josef, Wad Sackett, Peter W., Wesolowska-Andersen, Agata, Whitcher, Brandon, White, Margaret W., Adamski, Jerzy, Schwenk, Jochen M., Pearson, Ewan R., Dermitzakis, Emmanouil T., and Viñuela, Ana

Abstract

We evaluate the shared genetic regulation of mRNA molecules, proteins and metabolites derived from whole blood from 3029 human donors. We find abundant allelic heterogeneity, where multiple variants regulate a particular molecular phenotype, and pleiotropy, where a single variant associates with multiple molecular phenotypes over multiple genomic regions. The highest proportion of share genetic regulation is detected between gene expression and proteins (66.6%), with a further median shared genetic associations across 49 different tissues of 78.3% and 62.4% between plasma proteins and gene expression. We represent the genetic and molecular associations in networks including 2828 known GWAS variants, showing that GWAS variants are more often connected to gene expression in trans than other molecular phenotypes in the network. Our work provides a roadmap to understanding molecular networks and deriving the underlying mechanism of action of GWAS variants using different molecular phenotypes in an accessible tissue.

Published
2023

34. New technologies for DNA analysis – a review of the READNA Project

Author

McGinn, Steven, Bauer, David, Brefort, Thomas, Dong, Liqin, El-Sagheer, Afaf, Elsharawy, Abdou, Evans, Geraint, Falk-Sörqvist, Elin, Forster, Michael, Fredriksson, Simon, Freeman, Peter, Freitag, Camilla, Fritzsche, Joachim, Gibson, Spencer, Gullberg, Mats, Gut, Marta, Heath, Simon, Heath-Brun, Isabelle, Heron, Andrew J., Hohlbein, Johannes, Ke, Rongqin, Lancaster, Owen, Le Reste, Ludovic, Maglia, Giovanni, Marie, Rodolphe, Mauger, Florence, Mertes, Florian, Mignardi, Marco, Moens, Lotte, Oostmeijer, Jelle, Out, Ruud, Pedersen, Jonas Nyvold, Persson, Fredrik, Picaud, Vincent, Rotem, Dvir, Schracke, Nadine, Sengenes, Jennifer, Stähler, Peer F., Stade, Björn, Stoddart, David, Teng, Xia, Veal, Colin D., Zahra, Nathalie, Bayley, Hagan, Beier, Markus, Brown, Tom, Dekker, Cees, Ekström, Björn, Flyvbjerg, Henrik, Franke, Andre, Guenther, Simone, Kapanidis, Achillefs N., Kaye, Jane, Kristensen, Anders, Lehrach, Hans, Mangion, Jonathan, Sauer, Sascha, Schyns, Emile, Tost, Jörg, van Helvoort, Joop M.L.M., van der Zaag, Pieter J., Tegenfeldt, Jonas O., Brookes, Anthony J., Mir, Kalim, Nilsson, Mats, Willcocks, James P., and Gut, Ivo G.

Published
2016
Full Text
View/download PDF

38. Report from the 'Governing Biomodification' (BioGov) End of Project workshop July 2022

Author

Morrison, Michael, Mourby, Miranda, Bicudo, Edison, Li, Phoebe, Faulkner, Alex, and Kaye, Jane

Subjects
Governance, Regenerative medicine, Bioprinting, Access to medicines, Stem cells, Gene editing, Innovation, Responsible innovation, Regulation, ATMP
Abstract

The aim of the project “Governing biomodification in the life sciences” (‘BioGOV’) was to assess the regulatory framework for three emerging ‘biomodifying’ technologies: gene editing, induced pluripotent stem cells and 3D bioprinting. Each is an emerging technology with significant scientific, economic and medical potential. The project utilised a combination of legal and regulatory analysis, and empirical social science to understand the formal regulatory frameworks and the incentives, concepts and institutional factors shaping the translation of these technologies from laboratory tools into new potential healthcare products and services. BioGOV was a collaboration between researchers at the Universities of Oxford, Sussex and York and ran from September 2018 to August 2022. The project was funded by the Leverhulme Trust through project grant RPG2017-330. The BioGOV end of project meeting took place online on 18 July 2022. The aim of the workshop was two-fold: i) to disseminate key findings from the BioGOV project and, ii) to explore new directions for research, especially with regards to the potential for citizen-centric governance of biomodifying technologies. The structure of this report echoes those core aims. Section 2 presents the background to the BioGOV project (2.1), summarises its core research goals (2.2), methods (2.3) and findings (2.4). Section 3 then reviews the end of project workshop itself, covering the purpose and scope of the meeting, reports the content of the two core presentations on the empirical (3.1) and legal/theoretical (3.2) ramifications of the project and the workshop discussions which followed each presentation. Section 4 concludes this report by summarising the range of directions identified for future research on responsible, and citizen-centred governance of technological innovation., Funded by the Leverhulme Trust (UK) under grant number RPG-2017-330

Published
2022
Full Text
View/download PDF

42. Including all voices in international data-sharing governance

Author

Kaye, Jane, Terry, Sharon F., Juengst, Eric, Coy, Sarah, Harris, Jennifer R., Chalmers, Don, Dove, Edward S., Budin-Ljøsne, Isabelle, Adebamowo, Clement, Ogbe, Emilomo, Bezuidenhout, Louise, Morrison, Michael, Minion, Joel T., Murtagh, Madeleine J., Minari, Jusaku, Teare, Harriet, Isasi, Rosario, Kato, Kazuto, Rial-Sebbag, Emmanuelle, Marshall, Patricia, Koenig, Barbara, and Cambon-Thomsen, Anne

Published
2018
Full Text
View/download PDF

45. Patent power in biomedical innovation:Technology governance in biomodifying technologies

Author

Bicudo, Edison, Morrison, Michael, Li, Phoebe, Faulkner, Alex, Webster, Andrew, Mourby, Miranda, Kaye, Jane, Bicudo, Edison, Morrison, Michael, Li, Phoebe, Faulkner, Alex, Webster, Andrew, Mourby, Miranda, and Kaye, Jane

Abstract

Biomedical innovation is often rewarded by exclusive proprietary rights such as patents. In the case of gene editing, induced pluripotent stem cells, and three-dimensional (3D) bioprinting (here described as biomodifying technologies), the limitations of the patent system come into stark relief, generating both technical and political doubts. Generally, political and technological limitations are supposed to be solved with so-called good governance, based on some principles. We focus on three of such governance principles (participation, accountability, and transparency) to show how they have been weakened, instead of strengthened, by the current patent system. We demonstrate that although patent applications are submitted by both public and private players, the latter have imposed a growing dominance in gene editing, induced pluripotent stem cells, and 3D bioprinting, disseminating their aggressive and exclusive strategies. As a consequence, a logic of experimentality tends to prevail where the three fundamental governance principles fail to be enacted.

Published
2022

46. Biomodifying the 'natural':From Adaptive Regulation to Adaptive Societal Governance

Author

Mourby, Miranda, Bell, Jessica, Morrison, Michael, Faulkner, Alex, Li, Phoebe, Bicudo, Edison, Webster, Andrew, Kaye, Jane, Mourby, Miranda, Bell, Jessica, Morrison, Michael, Faulkner, Alex, Li, Phoebe, Bicudo, Edison, Webster, Andrew, and Kaye, Jane

Abstract

Biomodifying technologies-such as gene editing, induced pluripotent stem cells, and bioprinting-are being developed for a wide range of applications, from pest control to lab-grown meat. In medicine, regulators have responded to the challenge of evaluating modified 'natural' material as a therapeutic 'product' by introducing more flexible assessment schemes. Attempts have also been made to engage stakeholders across the globe on the acceptable parameters for these technologies, particularly in the case of gene editing. Regulatory flexibility and stakeholder engagement are important, but a broader perspective is also needed to respond to the potential disruption of biomodification. Our case-study technologies problematize basic ideas-such as 'nature', 'product', and 'donation'-that underpin the legal categories used to regulate biotechnology. Where such foundational concepts are rendered uncertain, a socially responsive and sustainable solution would involve exploring evolutions in these concepts across different societies. We suggest that the global observatory model is a good starting point for this 'Adaptive Societal Governance' approach, in which a self-organizing network of scholars and interested parties could carry out the multi-modal (meta)analyses needed to understand societal constructions of ideas inherent to our understanding of 'life'.

Published
2022

48. ELSI 2.0 for Genomics and Society

Author

Kaye, Jane, Meslin, Eric M., Knoppers, Bartha M., Juengst, Eric T., Deschênes, Mylène, Cambon-Thomsen, Anne, Chalmers, Donald, De Vries, Jantina, Edwards, Kelly, Hoppe, Nils, Kent, Alastair, Adebamowo, Clement, Marshall, Patricia, and Kato, Kazuto

Published
2012
Full Text
View/download PDF

Catalog

Books, media, physical & digital resources
See catalog results