Chapter 2: MEDICAL INFORMATION COMMONS: CONCEPTUAL, LEGAL AND ETHICAL CONSIDERATIONS FOR STAKEHOLDERS
The practice of medicine, the delivery of health care and public health services, and biomedical research have all become more data-intensive. The importance of managing information has become apparent, and with it attention to building knowledge commons. This chapter describes factors that influenc...
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| 格式: | Online |
| 語言: | 英语 |
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Edward Elgar Publishing
2023
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| 在線閱讀: | https://directory.doabooks.org/handle/20.500.12854/113186 |
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| author | Geary, Janis Majumder, Mary A. Robinson, Jill Oliver Guerrini, Christi Cook-Deegan, Robert |
| author_browse | Cook-Deegan, Robert Geary, Janis Guerrini, Christi Majumder, Mary A. Robinson, Jill Oliver |
| author_facet | Geary, Janis Majumder, Mary A. Robinson, Jill Oliver Guerrini, Christi Cook-Deegan, Robert |
| author_sort | Geary, Janis |
| collection | Directory of Open Access Books |
| description | The practice of medicine, the delivery of health care and public health services, and biomedical research have all become more data-intensive. The importance of managing information has become apparent, and with it attention to building knowledge commons. This chapter describes factors that influence the creation and use of diverse sets of data that enable biomedical advances. First, we characterize these resources as a Medical Information Commons (MIC). We describe commons scholarship generally and MICs more specifically, and describe approaches to commons governance. Next, we highlight specific issues around privacy and consent, and then discuss participant interests in the commons. We describe the negative history of marginalized and racialized populations, and finally we pull all of these concepts together and discuss challenges in building MICs that are trustworthy and inclusive, and meet the needs of marginalized and racialized populations. |
| format | Online |
| id | doab-20.500.12854ir-113186 |
| institution | Directory of Open Access Books |
| language | eng |
| publishDate | 2023 |
| publishDateRange | 2023 |
| publishDateSort | 2023 |
| publisher | Edward Elgar Publishing |
| publisherStr | Edward Elgar Publishing |
| record_format | ojs |
| spelling | doab-20.500.12854ir-1131862023-09-01T14:36:05Z Chapter 2: MEDICAL INFORMATION COMMONS: CONCEPTUAL, LEGAL AND ETHICAL CONSIDERATIONS FOR STAKEHOLDERS Geary, Janis Majumder, Mary A. Robinson, Jill Oliver Guerrini, Christi Cook-Deegan, Robert Commons, Data, Data sharing, Privacy, Ethics, Governance LNRD The practice of medicine, the delivery of health care and public health services, and biomedical research have all become more data-intensive. The importance of managing information has become apparent, and with it attention to building knowledge commons. This chapter describes factors that influence the creation and use of diverse sets of data that enable biomedical advances. First, we characterize these resources as a Medical Information Commons (MIC). We describe commons scholarship generally and MICs more specifically, and describe approaches to commons governance. Next, we highlight specific issues around privacy and consent, and then discuss participant interests in the commons. We describe the negative history of marginalized and racialized populations, and finally we pull all of these concepts together and discuss challenges in building MICs that are trustworthy and inclusive, and meet the needs of marginalized and racialized populations. Published 2023-09-01T14:36:03Z 2023-09-01T14:36:03Z 2022-01-11 chapter 9781839105951 https://directory.doabooks.org/handle/20.500.12854/113186 eng image/jpeg Attribution-NonCommercial-NoDerivatives 4.0 International https://www.e-elgar.com/shop/gbp/bioinformatics-medical-informatics-and-the-law-9781839105944.html https://www.elgaronline.com/edcollchap-oa/book/9781839105951/book-part-9781839105951-11.xml Edward Elgar Publishing Edward Elgar Publishing 10.4337/9781839105951.00011 10.4337/9781839105951.00011 01ceac28-75b4-492a-8eec-f9b98bc6b28c https://creativecommons.org/licenses/by-nc-nd/4.0/ 9781839105951 Edward Elgar Publishing Cheltenham, UK open access |
| spellingShingle | Commons, Data, Data sharing, Privacy, Ethics, Governance LNRD Geary, Janis Majumder, Mary A. Robinson, Jill Oliver Guerrini, Christi Cook-Deegan, Robert Chapter 2: MEDICAL INFORMATION COMMONS: CONCEPTUAL, LEGAL AND ETHICAL CONSIDERATIONS FOR STAKEHOLDERS |
| title | Chapter 2: MEDICAL INFORMATION COMMONS: CONCEPTUAL, LEGAL AND ETHICAL CONSIDERATIONS FOR STAKEHOLDERS |
| title_full | Chapter 2: MEDICAL INFORMATION COMMONS: CONCEPTUAL, LEGAL AND ETHICAL CONSIDERATIONS FOR STAKEHOLDERS |
| title_fullStr | Chapter 2: MEDICAL INFORMATION COMMONS: CONCEPTUAL, LEGAL AND ETHICAL CONSIDERATIONS FOR STAKEHOLDERS |
| title_full_unstemmed | Chapter 2: MEDICAL INFORMATION COMMONS: CONCEPTUAL, LEGAL AND ETHICAL CONSIDERATIONS FOR STAKEHOLDERS |
| title_short | Chapter 2: MEDICAL INFORMATION COMMONS: CONCEPTUAL, LEGAL AND ETHICAL CONSIDERATIONS FOR STAKEHOLDERS |
| title_sort | chapter 2 medical information commons conceptual legal and ethical considerations for stakeholders |
| topic | Commons, Data, Data sharing, Privacy, Ethics, Governance LNRD |
| topic_facet | Commons, Data, Data sharing, Privacy, Ethics, Governance LNRD |
| url | https://directory.doabooks.org/handle/20.500.12854/113186 |
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