Zobrazeno 1 - 10
of 509
pro vyhledávání: '"Bartha-Maria Knoppers"'
Autor:
Jean-Baptiste Poline, Samir Das, Tristan Glatard, Cécile Madjar, Erin W. Dickie, Xavier Lecours, Thomas Beaudry, Natacha Beck, Brendan Behan, Shawn T. Brown, David Bujold, Michael Beauvais, Bryan Caron, Candice Czech, Moyez Dharsee, Mathieu Dugré, Ken Evans, Tom Gee, Giulia Ippoliti, Gregory Kiar, Bartha Maria Knoppers, Tristan Kuehn, Diana Le, Derek Lo, Mandana Mazaheri, Dave MacFarlane, Naser Muja, Emmet A. O’Brien, Liam O’Callaghan, Santiago Paiva, Patrick Park, Darcy Quesnel, Henri Rabelais, Pierre Rioux, Mélanie Legault, Jennifer Tremblay-Mercier, David Rotenberg, Jessica Stone, Ted Strauss, Ksenia Zaytseva, Joey Zhou, Simon Duchesne, Ali R. Khan, Sean Hill, Alan C. Evans
Publikováno v:
Scientific Data, Vol 10, Iss 1, Pp 1-11 (2023)
Measurement(s) Digital Data Repository Technology Type(s) Digital Data Repository
Externí odkaz:
https://doaj.org/article/85468f9f3d9640d0a34ae84ffd997dae
Autor:
Fruzsina Molnár-Gábor, Michael J S Beauvais, Alexander Bernier, Maria Pilar Nicolas Jimenez, Mikel Recuero, Bartha Maria Knoppers
Publikováno v:
Journal of Medical Internet Research, Vol 24, Iss 10, p e37236 (2022)
In this viewpoint, we argue for the importance of creating data spaces for genomic research that are detached from contexts in which fundamental rights concerns related to surveillance measures override a purpose-specific balancing of fundamental rig
Externí odkaz:
https://doaj.org/article/dcec03e89f6f40bab02ae52f391721e7
Publikováno v:
BMC Medical Ethics, Vol 22, Iss 1, Pp 1-12 (2021)
Abstract Background The highly sensitive nature of genomic and associated clinical data, coupled with the consent-related vulnerabilities of children together accentuate ethical, legal and social issues (ELSI) concerning data sharing. The Key Implica
Externí odkaz:
https://doaj.org/article/26a4b20fbc834e37b25e2886e1f0dd0c
Publikováno v:
Nature Communications, Vol 12, Iss 1, Pp 1-3 (2021)
In this opinion piece, we discuss why computational tools to limit the identifiability of genomic data are a promising avenue for privacy-preservation and legal compliance. Even where these technologies do not eliminate all residual risk of individua
Externí odkaz:
https://doaj.org/article/042e5e2b86a747b5a4ba90e724c1b108
Publikováno v:
Frontiers in Genetics, Vol 13 (2022)
Data sharing is key to advancing our understanding of human health and well-being. While issues related to pediatric research warrant strong ethical protections, overly protectionist policies may serve to exclude minors from data sharing initiatives.
Externí odkaz:
https://doaj.org/article/253e66034a784b0c8021c32ee53c6fdf
Publikováno v:
Frontiers in Medicine, Vol 9 (2022)
IntroductionMaking bench to bedside advances in cystic fibrosis (CF) care requires the sustained engagement and trust of people living with CF. However, there is a scarcity of studies exploring their concerns and priorities regarding research and its
Externí odkaz:
https://doaj.org/article/c5c9ad59554146f99f14d0a54419b549
Autor:
Dimitri Patrinos, Bartha Maria Knoppers, Erika Kleiderman, Noriyeh Rahbari, David P. Laplante, Ashley Wazana
Publikováno v:
Canadian Journal of Bioethics, Vol 5, Iss 1 (2022)
Re-contacting minors enrolled in research upon their reaching the age of majority or maturity to seek their autonomous consent to continue their participation is considered an ethical requirement. This issue has generally been studied in the context
Externí odkaz:
https://doaj.org/article/826592ffbe904679a3431e248cf482a2
Publikováno v:
Genome Medicine, Vol 13, Iss 1, Pp 1-3 (2021)
Abstract The Global Alliance for Genomics and Health has approved a policy for the return of clinically actionable genomic research results, the first such policy approved by an international body. The policy acknowledges the potential medical benefi
Externí odkaz:
https://doaj.org/article/3dfdaa5212594e93bd47fa59ee6fffb7
Publikováno v:
NeuroImage, Vol 236, Iss , Pp 118041- (2021)
Open Science is calling for a radical re-thinking of existing scientific practices. Within the neuroimaging community, Open Science practices are taking the form of open data repositories and open lab notebooks. The broad sharing of data that accompa
Externí odkaz:
https://doaj.org/article/ae6e4a86c6cc4754b2add2a1ab36e652
Autor:
Michael J. S. Beauvais, Adrian M. Thorogood, Michael J. Szego, Karine Sénécal, Ma'n H. Zawati, Bartha Maria Knoppers
Publikováno v:
Frontiers in Genetics, Vol 12 (2021)
Externí odkaz:
https://doaj.org/article/50739b9ba9494cd58464a4d6330cde85