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Consenting to donation: an examination of current practices in informed consent for tissue donation in the US
Informed consent is the primary moral principle guiding the donation of human tissue for transplant purposes. When patients’ donation wishes are not known, family members making the decision about tissue donation should be provided with requisite information needed to make informed donation decision...
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Published in: | Cell and tissue banking 2013-03, Vol.14 (1), p.85-95 |
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description | Informed consent is the primary moral principle guiding the donation of human tissue for transplant purposes. When patients’ donation wishes are not known, family members making the decision about tissue donation should be provided with requisite information needed to make informed donation decisions. Using a unique dataset of 1,016 audiotaped requests for tissue obtained from 15 US tissue banking organizations, we examined whether the information provided to families considering tissue donation met current standards for informed consent. The results indicated that many elements of informed consent were missing from the donation discussions, including the timeframe for procurement, autopsy issues, the involvement of both for-profit and nonprofit organizations, and the processing, storage and distribution of donated tissue. A multiple linear regression analysis also revealed that nonwhites and family members of increased age received less information regarding tissue donation than did younger, white decision makers. Recommendations for improving the practice of obtaining consent to tissue donation are provided. |
doi_str_mv | 10.1007/s10561-012-9303-7 |
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When patients’ donation wishes are not known, family members making the decision about tissue donation should be provided with requisite information needed to make informed donation decisions. Using a unique dataset of 1,016 audiotaped requests for tissue obtained from 15 US tissue banking organizations, we examined whether the information provided to families considering tissue donation met current standards for informed consent. The results indicated that many elements of informed consent were missing from the donation discussions, including the timeframe for procurement, autopsy issues, the involvement of both for-profit and nonprofit organizations, and the processing, storage and distribution of donated tissue. A multiple linear regression analysis also revealed that nonwhites and family members of increased age received less information regarding tissue donation than did younger, white decision makers. 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When patients’ donation wishes are not known, family members making the decision about tissue donation should be provided with requisite information needed to make informed donation decisions. Using a unique dataset of 1,016 audiotaped requests for tissue obtained from 15 US tissue banking organizations, we examined whether the information provided to families considering tissue donation met current standards for informed consent. The results indicated that many elements of informed consent were missing from the donation discussions, including the timeframe for procurement, autopsy issues, the involvement of both for-profit and nonprofit organizations, and the processing, storage and distribution of donated tissue. A multiple linear regression analysis also revealed that nonwhites and family members of increased age received less information regarding tissue donation than did younger, white decision makers. Recommendations for improving the practice of obtaining consent to tissue donation are provided.</description><subject>Adult</subject><subject>Age</subject><subject>Autopsy</subject><subject>Biomedical and Life Sciences</subject><subject>Biomedicine</subject><subject>Blood & organ donations</subject><subject>Cell Biology</subject><subject>Decision making</subject><subject>Demography</subject><subject>Ethics</subject><subject>Female</subject><subject>Humans</subject><subject>Informed consent</subject><subject>Informed Consent - legislation & jurisprudence</subject><subject>Life Sciences</subject><subject>Male</subject><subject>Regression Analysis</subject><subject>Tissue and Organ Procurement - legislation & jurisprudence</subject><subject>Tissues</subject><subject>Transplant Surgery</subject><subject>United States</subject><subject>United States Office of Research Integrity</subject><issn>1389-9333</issn><issn>1573-6814</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2013</creationdate><recordtype>article</recordtype><recordid>eNqNkV9rFDEUxYMotlY_gC8S8MWXsTfJJJP4IMhS_0DBh7bPIZu5s03ZSdZkpui3b9apSxUKQiC53N89Ockh5DWD9wygOy0MpGINMN4YAaLpnpBjJjvRKM3ap_UstKkdIY7Ii1JuADh0XDwnR5wLUzl1TMZVigXjFOKGTon2KboppPiBukjxpxvDUtM0UD_nXEm6y85PwWOhIdY1pDxiT_2iQ2tJp1DKjAexPTddI726eEmeDW5b8NX9fkKuPp9drr4259-_fFt9Om-8BDE13HC_ZlICc8y3nUHdSgZ60F5p6GDdCuwl826N2ItBMdcNSmvsW256dFKJE_Jx0d3N62rOV2PZbe0uh9HlXza5YP_uxHBtN-nWCqk0B14F3t0L5PRjxjLZMRSP262LmOZiGTdMgTGt-Q9Uy1ZJqUVF3_6D3qQ5x_oTvyloWyn25tlC-ZxKyTgcfDOw-9ztkrutudt97rarM28ePvgw8SfoCvAFKLUVN5gfXP2o6h1rurl4</recordid><startdate>20130301</startdate><enddate>20130301</enddate><creator>Siminoff, Laura A.</creator><creator>Traino, Heather M.</creator><general>Springer Netherlands</general><general>Springer Nature B.V</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>3V.</scope><scope>7RV</scope><scope>7U9</scope><scope>7X7</scope><scope>7XB</scope><scope>88A</scope><scope>88E</scope><scope>8AO</scope><scope>8FE</scope><scope>8FH</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BHPHI</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>H94</scope><scope>HCIFZ</scope><scope>K9.</scope><scope>KB0</scope><scope>LK8</scope><scope>M0S</scope><scope>M1P</scope><scope>M7N</scope><scope>M7P</scope><scope>NAPCQ</scope><scope>PHGZM</scope><scope>PHGZT</scope><scope>PJZUB</scope><scope>PKEHL</scope><scope>PPXIY</scope><scope>PQEST</scope><scope>PQGLB</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>7X8</scope><scope>7QO</scope><scope>8FD</scope><scope>FR3</scope><scope>P64</scope><scope>5PM</scope></search><sort><creationdate>20130301</creationdate><title>Consenting to donation: an examination of current practices in informed consent for tissue donation in the US</title><author>Siminoff, Laura A. ; Traino, Heather M.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c503t-292cb15501a1c479e845108f8c68070b43ed51cabeed3f61a7f688ed429dea563</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2013</creationdate><topic>Adult</topic><topic>Age</topic><topic>Autopsy</topic><topic>Biomedical and Life Sciences</topic><topic>Biomedicine</topic><topic>Blood & organ donations</topic><topic>Cell Biology</topic><topic>Decision making</topic><topic>Demography</topic><topic>Ethics</topic><topic>Female</topic><topic>Humans</topic><topic>Informed consent</topic><topic>Informed Consent - legislation & jurisprudence</topic><topic>Life Sciences</topic><topic>Male</topic><topic>Regression Analysis</topic><topic>Tissue and Organ Procurement - legislation & jurisprudence</topic><topic>Tissues</topic><topic>Transplant Surgery</topic><topic>United States</topic><topic>United States Office of Research Integrity</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Siminoff, Laura A.</creatorcontrib><creatorcontrib>Traino, Heather M.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>ProQuest Nursing and Allied Health Journals</collection><collection>Virology and AIDS Abstracts</collection><collection>Health & Medical Collection (Proquest)</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Biology Database (Alumni Edition)</collection><collection>Medical Database (Alumni Edition)</collection><collection>ProQuest Pharma Collection</collection><collection>ProQuest SciTech Collection</collection><collection>ProQuest Natural Science Collection</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central Essentials</collection><collection>Biological Science Collection</collection><collection>ProQuest Central</collection><collection>ProQuest Natural Science Collection</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>SciTech Premium Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Biological Sciences</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>PML(ProQuest Medical Library)</collection><collection>Algology Mycology and Protozoology Abstracts (Microbiology C)</collection><collection>Biological Science Database</collection><collection>Nursing & Allied Health Premium</collection><collection>ProQuest Central (New)</collection><collection>ProQuest One Academic (New)</collection><collection>ProQuest Health & Medical Research Collection</collection><collection>ProQuest One Academic Middle East (New)</collection><collection>ProQuest One Health & Nursing</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Applied & Life Sciences</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>MEDLINE - 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When patients’ donation wishes are not known, family members making the decision about tissue donation should be provided with requisite information needed to make informed donation decisions. Using a unique dataset of 1,016 audiotaped requests for tissue obtained from 15 US tissue banking organizations, we examined whether the information provided to families considering tissue donation met current standards for informed consent. The results indicated that many elements of informed consent were missing from the donation discussions, including the timeframe for procurement, autopsy issues, the involvement of both for-profit and nonprofit organizations, and the processing, storage and distribution of donated tissue. A multiple linear regression analysis also revealed that nonwhites and family members of increased age received less information regarding tissue donation than did younger, white decision makers. 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subjects | Adult Age Autopsy Biomedical and Life Sciences Biomedicine Blood & organ donations Cell Biology Decision making Demography Ethics Female Humans Informed consent Informed Consent - legislation & jurisprudence Life Sciences Male Regression Analysis Tissue and Organ Procurement - legislation & jurisprudence Tissues Transplant Surgery United States United States Office of Research Integrity |
title | Consenting to donation: an examination of current practices in informed consent for tissue donation in the US |
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