Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data-Sharing Landscape
Scientific data-sharing and open science initiatives are increasingly important mechanisms for advancing the impact of genomic research. These mechanisms are being implemented as growing attention is paid to the need to improve the inclusion of research participants from marginalized and underrepres...
| VerfasserInnen: | ; |
|---|---|
| Medienart: | Elektronisch Aufsatz |
| Sprache: | Englisch |
| Verfügbarkeit prüfen: | HBZ Gateway |
| Fernleihe: | Fernleihe für die Fachinformationsdienste |
| Veröffentlicht: |
2024
|
| In: |
The Hastings Center report
Jahr: 2024, Band: 54, Seiten: S73-S83 |
| weitere Schlagwörter: | B
Genomics
B Health equity B relational ethics B research ethics B Open Science B data sharing |
| Online-Zugang: |
Volltext (kostenfrei) Volltext (kostenfrei) |
MARC
| LEADER | 00000naa a22000002c 4500 | ||
|---|---|---|---|
| 001 | 1914564936 | ||
| 003 | DE-627 | ||
| 005 | 20250114150624.0 | ||
| 007 | cr uuu---uuuuu | ||
| 008 | 250114s2024 xx |||||o 00| ||eng c | ||
| 024 | 7 | |a 10.1002/hast.4932 |2 doi | |
| 035 | |a (DE-627)1914564936 | ||
| 035 | |a (DE-599)KXP1914564936 | ||
| 040 | |a DE-627 |b ger |c DE-627 |e rda | ||
| 041 | |a eng | ||
| 084 | |a 1 |2 ssgn | ||
| 100 | 1 | |e VerfasserIn |0 (DE-588)133412485X |0 (DE-627)1892288974 |4 aut |a Kraft, Stephanie A. | |
| 109 | |a Kraft, Stephanie A. | ||
| 245 | 1 | 0 | |a Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data-Sharing Landscape |
| 264 | 1 | |c 2024 | |
| 336 | |a Text |b txt |2 rdacontent | ||
| 337 | |a Computermedien |b c |2 rdamedia | ||
| 338 | |a Online-Ressource |b cr |2 rdacarrier | ||
| 520 | |a Scientific data-sharing and open science initiatives are increasingly important mechanisms for advancing the impact of genomic research. These mechanisms are being implemented as growing attention is paid to the need to improve the inclusion of research participants from marginalized and underrepresented groups. Together, these efforts aim to promote equitable advancements in genomic medicine. However, if not guided by community-informed protections, these efforts may harm the very participants and communities they aim to benefit. This essay examines potential benefits and harms of open science and explores how to advance a more just vision of open science in genomics. Drawing on relational ethics frameworks, we argue that researchers should consider their obligations to participants as well as the broader communities that are impacted by their research. We propose eight strategies to provide a foundation of practical steps for researchers to reduce the possibility of harms stemming from open science and to work toward genomic justice. | ||
| 601 | |a Open Science | ||
| 650 | 4 | |a data sharing | |
| 650 | 4 | |a Genomics | |
| 650 | 4 | |a Health equity | |
| 650 | 4 | |a Open Science | |
| 650 | 4 | |a relational ethics | |
| 650 | 4 | |a research ethics | |
| 700 | 1 | |e VerfasserIn |0 (DE-588)1353366553 |0 (DE-627)1914577744 |4 aut |a Mittendorf, Kathleen F. | |
| 773 | 0 | 8 | |i Enthalten in |a Hastings Center |t The Hastings Center report |d Malden, Mass. : Wiley, 1971 |g 54(2024), S2, Seite S73-S83 |h Online-Ressource |w (DE-627)341346551 |w (DE-600)2067369-3 |w (DE-576)258761822 |x 1552-146X |7 nnas |
| 773 | 1 | 8 | |g volume:54 |g year:2024 |g supplement:S2 |g pages:S73-S83 |
| 856 | |u https://www.ncbi.nlm.nih.gov/pmc/articles/12320189 |x unpaywall |z Vermutlich kostenfreier Zugang |h repository [deprecated] | ||
| 856 | 4 | 0 | |u https://doi.org/10.1002/hast.4932 |x Resolving-System |z kostenfrei |3 Volltext |
| 856 | 4 | 0 | |u https://onlinelibrary.wiley.com/doi/abs/10.1002/hast.4932 |x Verlag |z kostenfrei |3 Volltext |
| 951 | |a AR | ||
| ELC | |a 1 | ||
| ITA | |a 1 |t 1 | ||
| LOK | |0 000 xxxxxcx a22 zn 4500 | ||
| LOK | |0 001 4651243460 | ||
| LOK | |0 003 DE-627 | ||
| LOK | |0 004 1914564936 | ||
| LOK | |0 005 20250114135123 | ||
| LOK | |0 008 250114||||||||||||||||ger||||||| | ||
| LOK | |0 040 |a DE-Tue135 |c DE-627 |d DE-Tue135 | ||
| LOK | |0 092 |o n | ||
| LOK | |0 852 |a DE-Tue135 | ||
| LOK | |0 852 1 |9 00 | ||
| LOK | |0 866 |x zotak: Nacherfasst, da in zota-Errors | ||
| LOK | |0 935 |a ixzs |a ixzo | ||
| OAS | |a 1 | ||
| ORI | |a SA-MARC-ixtheoa001.raw | ||
| STA | 0 | 0 | |a Open scholarship |
| STB | 0 | 0 | |a Science ouverte |
| STC | 0 | 0 | |a Ciencia abierta |
| STD | 0 | 0 | |a Open science |
| STF | 0 | 0 | |a 開放科學 |
| STG | 0 | 0 | |a Ciência aberta |
| STH | 0 | 0 | |a Открытая наука |
| SYE | 0 | 0 | |a Offene Wissenschaft,Öffentliche Wissenschaft,Open Research,Open Scholarship |
