Do people have an ethical obligation to share their health information? Comparing narratives of altruism and health information sharing in a nationally representative sample
With the emergence of new health information technologies, health information can be shared across networks, with or without patients' awareness and/or their consent. It is often argued that there can be an ethical obligation to participate in biomedical research, motivated by altruism, particu...
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| Veröffentlicht in: | PloS one 2020-12, Vol.15 (12), p.e0244767-e0244767 |
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| creator | Raj, Minakshi De Vries, Raymond Nong, Paige Kardia, Sharon L R Platt, Jodyn E |
| description | With the emergence of new health information technologies, health information can be shared across networks, with or without patients' awareness and/or their consent. It is often argued that there can be an ethical obligation to participate in biomedical research, motivated by altruism, particularly when risks are low. In this study, we explore whether altruism contributes to the belief that there is an ethical obligation to share information about one's health as well as how other health care experiences, perceptions, and concerns might be related to belief in such an obligation.
We conducted an online survey using the National Opinion Research Center's (NORC) probability-based, nationally representative sample of U.S. adults. Our final analytic sample included complete responses from 2069 participants. We used multivariable logistic regression to examine how altruism, together with other knowledge, attitudes, and experiences contribute to the belief in an ethical obligation to allow health information to be used for research.
We find in multivariable regression that general altruism is associated with a higher likelihood of belief in an ethical obligation to allow one's health information to be used for research (OR = 1.22, SE = 0.14, p = 0.078). Trust in the health system and in care providers are both associated with a significantly higher likelihood of believing there is an ethical obligation to allow health information to be used (OR = 1.48, SE = 0.76, p |
| doi_str_mv | 10.1371/journal.pone.0244767 |
| format | Article |
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We conducted an online survey using the National Opinion Research Center's (NORC) probability-based, nationally representative sample of U.S. adults. Our final analytic sample included complete responses from 2069 participants. We used multivariable logistic regression to examine how altruism, together with other knowledge, attitudes, and experiences contribute to the belief in an ethical obligation to allow health information to be used for research.
We find in multivariable regression that general altruism is associated with a higher likelihood of belief in an ethical obligation to allow one's health information to be used for research (OR = 1.22, SE = 0.14, p = 0.078). Trust in the health system and in care providers are both associated with a significantly higher likelihood of believing there is an ethical obligation to allow health information to be used (OR = 1.48, SE = 0.76, p<0.001; OR = 1.58, SE = 0.26, p<0.01, respectively).
Belief that there is an ethical obligation to allow one's health information to be used for research is shaped by altruism and by one's experience with, and perceptions of, health care and by general concerns about the use of personal information. Altruism cannot be assumed and researchers must recognize the ways encounters with the health care system influence (un)willingness to share one's health information.</description><identifier>ISSN: 1932-6203</identifier><identifier>EISSN: 1932-6203</identifier><identifier>DOI: 10.1371/journal.pone.0244767</identifier><identifier>PMID: 33382835</identifier><language>eng</language><publisher>United States: Public Library of Science</publisher><subject>Adult ; Aged ; Altruism ; Attitude ; Beliefs, opinions and attitudes ; Biology and Life Sciences ; Consent ; Disclosure of information ; Ethical aspects ; Ethics ; Female ; Health care ; Health care policy ; Health risks ; Human subjects ; Humans ; Information Dissemination - ethics ; Information sharing ; Information technology ; Knowledge ; Male ; Medical records ; Medical research ; Medicine and Health Sciences ; Middle Aged ; Moral Obligations ; Motivation ; Participation ; Patients ; Personal information ; Public good ; Public health ; Records and correspondence ; Regression analysis ; Research ethics ; Research facilities ; Science Policy ; Social Sciences ; Society ; Statistical analysis ; Surveys and Questionnaires ; Truth Disclosure - ethics</subject><ispartof>PloS one, 2020-12, Vol.15 (12), p.e0244767-e0244767</ispartof><rights>COPYRIGHT 2020 Public Library of Science</rights><rights>2020 Raj et al. This is an open access article distributed under the terms of the Creative Commons Attribution License: http://creativecommons.org/licenses/by/4.0/ (the “License”), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>2020 Raj et al 2020 Raj et al</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c692t-cefc2717bbf948ec7c28c1346440f8d3c185de47158a206efe2251e17eadb7ed3</citedby><cites>FETCH-LOGICAL-c692t-cefc2717bbf948ec7c28c1346440f8d3c185de47158a206efe2251e17eadb7ed3</cites><orcidid>0000-0002-2849-9005 ; 0000-0002-1457-7850</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC7774955/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC7774955/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,727,780,784,864,885,2102,2928,23866,27924,27925,53791,53793,79600,79601</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/33382835$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><contributor>Bhargava, Madhavi</contributor><creatorcontrib>Raj, Minakshi</creatorcontrib><creatorcontrib>De Vries, Raymond</creatorcontrib><creatorcontrib>Nong, Paige</creatorcontrib><creatorcontrib>Kardia, Sharon L R</creatorcontrib><creatorcontrib>Platt, Jodyn E</creatorcontrib><title>Do people have an ethical obligation to share their health information? Comparing narratives of altruism and health information sharing in a nationally representative sample</title><title>PloS one</title><addtitle>PLoS One</addtitle><description>With the emergence of new health information technologies, health information can be shared across networks, with or without patients' awareness and/or their consent. It is often argued that there can be an ethical obligation to participate in biomedical research, motivated by altruism, particularly when risks are low. In this study, we explore whether altruism contributes to the belief that there is an ethical obligation to share information about one's health as well as how other health care experiences, perceptions, and concerns might be related to belief in such an obligation.
We conducted an online survey using the National Opinion Research Center's (NORC) probability-based, nationally representative sample of U.S. adults. Our final analytic sample included complete responses from 2069 participants. We used multivariable logistic regression to examine how altruism, together with other knowledge, attitudes, and experiences contribute to the belief in an ethical obligation to allow health information to be used for research.
We find in multivariable regression that general altruism is associated with a higher likelihood of belief in an ethical obligation to allow one's health information to be used for research (OR = 1.22, SE = 0.14, p = 0.078). Trust in the health system and in care providers are both associated with a significantly higher likelihood of believing there is an ethical obligation to allow health information to be used (OR = 1.48, SE = 0.76, p<0.001; OR = 1.58, SE = 0.26, p<0.01, respectively).
Belief that there is an ethical obligation to allow one's health information to be used for research is shaped by altruism and by one's experience with, and perceptions of, health care and by general concerns about the use of personal information. Altruism cannot be assumed and researchers must recognize the ways encounters with the health care system influence (un)willingness to share one's health information.</description><subject>Adult</subject><subject>Aged</subject><subject>Altruism</subject><subject>Attitude</subject><subject>Beliefs, opinions and attitudes</subject><subject>Biology and Life Sciences</subject><subject>Consent</subject><subject>Disclosure of information</subject><subject>Ethical aspects</subject><subject>Ethics</subject><subject>Female</subject><subject>Health care</subject><subject>Health care policy</subject><subject>Health risks</subject><subject>Human subjects</subject><subject>Humans</subject><subject>Information Dissemination - ethics</subject><subject>Information sharing</subject><subject>Information technology</subject><subject>Knowledge</subject><subject>Male</subject><subject>Medical records</subject><subject>Medical research</subject><subject>Medicine and Health Sciences</subject><subject>Middle Aged</subject><subject>Moral Obligations</subject><subject>Motivation</subject><subject>Participation</subject><subject>Patients</subject><subject>Personal information</subject><subject>Public good</subject><subject>Public health</subject><subject>Records and correspondence</subject><subject>Regression analysis</subject><subject>Research ethics</subject><subject>Research facilities</subject><subject>Science Policy</subject><subject>Social Sciences</subject><subject>Society</subject><subject>Statistical analysis</subject><subject>Surveys and Questionnaires</subject><subject>Truth Disclosure - ethics</subject><issn>1932-6203</issn><issn>1932-6203</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><sourceid>DOA</sourceid><recordid>eNqNk9tq3DAQhk1padK0b1BaQaG0F7u1Drbsm5aQngKBQE-3YiyP1wqy5Uh2aB6q71h5dxN2y14UX9iMv_8fzWgmSZ7TdEm5pO-u3OR7sMvB9bhMmRAylw-SY1pytshZyh_ufB8lT0K4StOMF3n-ODninBes4Nlx8uejIwO6wSJp4QYJ9ATH1miwxFXWrGA0riejI6EFj2Rs0XjSItixJaZvnO_WxAdy5roBvOlXpAfvY_AGA3ENiaSfTOiic31AuPadVaYnEKVzDKy9JR4HjwH7cW1FAnTxjE-TRw3YgM-275Pk5-dPP86-Li4uv5yfnV4sdF6ycaGx0UxSWVVNKQrUUrNCUy5yIdKmqLmmRVajkDQrgKU5NshYRpFKhLqSWPOT5OXGd7AuqG2ng2JCCpFHyzIS5xuidnClBm868LfKgVHrgPMrBX402qLKWcN4RiuosBDYpKUELEpWQbyAGjWLXu-32aaqw1rHoj3YPdP9P71p1crdKCmlKLMsGrzZGnh3PWEYVWeCRmuhRzdtzp2llNE516t_0MPVbakVxALm64p59WyqTvO5b5LFETpJlgeo-NTYGR3HsjExvid4uyeIzIi_xxVMIajz79_-n738tc--3mE3QxacneZhCvug2IDauxA8NvdNpqmat-quG2reKrXdqih7sXtB96K7NeJ_AYTzIbg</recordid><startdate>20201231</startdate><enddate>20201231</enddate><creator>Raj, Minakshi</creator><creator>De Vries, Raymond</creator><creator>Nong, Paige</creator><creator>Kardia, Sharon L R</creator><creator>Platt, Jodyn E</creator><general>Public Library of Science</general><general>Public Library of Science (PLoS)</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>IOV</scope><scope>ISR</scope><scope>3V.</scope><scope>7QG</scope><scope>7QL</scope><scope>7QO</scope><scope>7RV</scope><scope>7SN</scope><scope>7SS</scope><scope>7T5</scope><scope>7TG</scope><scope>7TM</scope><scope>7U9</scope><scope>7X2</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8AO</scope><scope>8C1</scope><scope>8FD</scope><scope>8FE</scope><scope>8FG</scope><scope>8FH</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABJCF</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ARAPS</scope><scope>ATCPS</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BGLVJ</scope><scope>BHPHI</scope><scope>C1K</scope><scope>CCPQU</scope><scope>D1I</scope><scope>DWQXO</scope><scope>FR3</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>H94</scope><scope>HCIFZ</scope><scope>K9.</scope><scope>KB.</scope><scope>KB0</scope><scope>KL.</scope><scope>L6V</scope><scope>LK8</scope><scope>M0K</scope><scope>M0S</scope><scope>M1P</scope><scope>M7N</scope><scope>M7P</scope><scope>M7S</scope><scope>NAPCQ</scope><scope>P5Z</scope><scope>P62</scope><scope>P64</scope><scope>PATMY</scope><scope>PDBOC</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>PTHSS</scope><scope>PYCSY</scope><scope>RC3</scope><scope>7X8</scope><scope>5PM</scope><scope>DOA</scope><orcidid>https://orcid.org/0000-0002-2849-9005</orcidid><orcidid>https://orcid.org/0000-0002-1457-7850</orcidid></search><sort><creationdate>20201231</creationdate><title>Do people have an ethical obligation to share their health information? Comparing narratives of altruism and health information sharing in a nationally representative sample</title><author>Raj, Minakshi ; De Vries, Raymond ; Nong, Paige ; Kardia, Sharon L R ; Platt, Jodyn E</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c692t-cefc2717bbf948ec7c28c1346440f8d3c185de47158a206efe2251e17eadb7ed3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>Adult</topic><topic>Aged</topic><topic>Altruism</topic><topic>Attitude</topic><topic>Beliefs, opinions and attitudes</topic><topic>Biology and Life Sciences</topic><topic>Consent</topic><topic>Disclosure of information</topic><topic>Ethical aspects</topic><topic>Ethics</topic><topic>Female</topic><topic>Health care</topic><topic>Health care policy</topic><topic>Health risks</topic><topic>Human subjects</topic><topic>Humans</topic><topic>Information Dissemination - ethics</topic><topic>Information sharing</topic><topic>Information technology</topic><topic>Knowledge</topic><topic>Male</topic><topic>Medical records</topic><topic>Medical research</topic><topic>Medicine and Health Sciences</topic><topic>Middle Aged</topic><topic>Moral Obligations</topic><topic>Motivation</topic><topic>Participation</topic><topic>Patients</topic><topic>Personal information</topic><topic>Public good</topic><topic>Public health</topic><topic>Records and correspondence</topic><topic>Regression analysis</topic><topic>Research ethics</topic><topic>Research facilities</topic><topic>Science Policy</topic><topic>Social Sciences</topic><topic>Society</topic><topic>Statistical analysis</topic><topic>Surveys and Questionnaires</topic><topic>Truth Disclosure - 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Comparing narratives of altruism and health information sharing in a nationally representative sample</atitle><jtitle>PloS one</jtitle><addtitle>PLoS One</addtitle><date>2020-12-31</date><risdate>2020</risdate><volume>15</volume><issue>12</issue><spage>e0244767</spage><epage>e0244767</epage><pages>e0244767-e0244767</pages><issn>1932-6203</issn><eissn>1932-6203</eissn><abstract>With the emergence of new health information technologies, health information can be shared across networks, with or without patients' awareness and/or their consent. It is often argued that there can be an ethical obligation to participate in biomedical research, motivated by altruism, particularly when risks are low. In this study, we explore whether altruism contributes to the belief that there is an ethical obligation to share information about one's health as well as how other health care experiences, perceptions, and concerns might be related to belief in such an obligation.
We conducted an online survey using the National Opinion Research Center's (NORC) probability-based, nationally representative sample of U.S. adults. Our final analytic sample included complete responses from 2069 participants. We used multivariable logistic regression to examine how altruism, together with other knowledge, attitudes, and experiences contribute to the belief in an ethical obligation to allow health information to be used for research.
We find in multivariable regression that general altruism is associated with a higher likelihood of belief in an ethical obligation to allow one's health information to be used for research (OR = 1.22, SE = 0.14, p = 0.078). Trust in the health system and in care providers are both associated with a significantly higher likelihood of believing there is an ethical obligation to allow health information to be used (OR = 1.48, SE = 0.76, p<0.001; OR = 1.58, SE = 0.26, p<0.01, respectively).
Belief that there is an ethical obligation to allow one's health information to be used for research is shaped by altruism and by one's experience with, and perceptions of, health care and by general concerns about the use of personal information. Altruism cannot be assumed and researchers must recognize the ways encounters with the health care system influence (un)willingness to share one's health information.</abstract><cop>United States</cop><pub>Public Library of Science</pub><pmid>33382835</pmid><doi>10.1371/journal.pone.0244767</doi><tpages>e0244767</tpages><orcidid>https://orcid.org/0000-0002-2849-9005</orcidid><orcidid>https://orcid.org/0000-0002-1457-7850</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | PloS one, 2020-12, Vol.15 (12), p.e0244767-e0244767 |
| issn | 1932-6203 1932-6203 |
| language | eng |
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| source | MEDLINE; DOAJ Directory of Open Access Journals; Public Library of Science (PLoS); EZB-FREE-00999 freely available EZB journals; PubMed Central; Free Full-Text Journals in Chemistry |
| subjects | Adult Aged Altruism Attitude Beliefs, opinions and attitudes Biology and Life Sciences Consent Disclosure of information Ethical aspects Ethics Female Health care Health care policy Health risks Human subjects Humans Information Dissemination - ethics Information sharing Information technology Knowledge Male Medical records Medical research Medicine and Health Sciences Middle Aged Moral Obligations Motivation Participation Patients Personal information Public good Public health Records and correspondence Regression analysis Research ethics Research facilities Science Policy Social Sciences Society Statistical analysis Surveys and Questionnaires Truth Disclosure - ethics |
| title | Do people have an ethical obligation to share their health information? Comparing narratives of altruism and health information sharing in a nationally representative sample |
| url | https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-01-05T14%3A35%3A24IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-gale_plos_&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=Do%20people%20have%20an%20ethical%20obligation%20to%20share%20their%20health%20information?%20Comparing%20narratives%20of%20altruism%20and%20health%20information%20sharing%20in%20a%20nationally%20representative%20sample&rft.jtitle=PloS%20one&rft.au=Raj,%20Minakshi&rft.date=2020-12-31&rft.volume=15&rft.issue=12&rft.spage=e0244767&rft.epage=e0244767&rft.pages=e0244767-e0244767&rft.issn=1932-6203&rft.eissn=1932-6203&rft_id=info:doi/10.1371/journal.pone.0244767&rft_dat=%3Cgale_plos_%3EA647157233%3C/gale_plos_%3E%3Curl%3E%3C/url%3E&disable_directlink=true&sfx.directlink=off&sfx.report_link=0&rft_id=info:oai/&rft_pqid=2474469489&rft_id=info:pmid/33382835&rft_galeid=A647157233&rft_doaj_id=oai_doaj_org_article_62f2351babe84ef097ae892ba835dec2&rfr_iscdi=true |