Ethical, legal and social issues publications on biobanks 2011-2018. A scoping review

被引:0
作者
Argudo-Portal, Violeta [1 ]
Domenech, Miquel [1 ]
机构
[1] Univ Autonoma Barcelona, Dept Psicol Social, Campus UAB Edificio B Despacho B5-048, Barcelona 08193, Cerdanyola Del, Spain
来源
REVISTA ESPANOLA DE SALUD PUBLICA | 2020年 / 94卷
关键词
Biobank; Scoping review; ELSI; Social science; Translational medicine; Public engagement; Gift giving; Tissue donors; Informed consent; Data curation; BROAD CONSENT; BIOLOGICAL SAMPLES; ATTITUDES; HEALTH; GOVERNANCE; PARTICIPATION; COMMUNITY; TRUST; COMMERCIALIZATION; INFRASTRUCTURE;
D O I
暂无
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
Background: Human-based biobanks have been presented as intermediary agents between donors/participants, the scientific community, the healthcare system, and patients. The objective of this systematic review was to contribute with an updated thematic synthesis in Spanish of the international literature (2011-2018) regarding ethical, legal. and social issues on contemporary biobanks. Methods: A scoping review and thematic analysis were carried out on biobanks' ethical, legal, and social issues. The following databases were searched: Web of Science, SciELO. and Dialnet. The review included 2011-2018 publications with the term "biobank"or"biobanco" in English, Spanish. Portuguese. and French. Results: A total of 153 publications were analyzed. The most published themes were: informed consent, biobanks as a scientific tool, other ethical issues, public engagement, and regulation. While documents published in English provide studies with a broader anthropologic approach and display the participatory turn, in Spanish a technical approach is more common. Conclusions: Publications confirm and support biobanks' relevance in current and future biomedical research, but also illustrate the entanglement of a diverse range of healthcare institutions and relations. Biobanks" techno-scientific issues cannot be split from the ethical, legal, and social ones or place them as secondary; all of them are co-produced. This review points to current topics and challenges which need to be addressed to establish transparent. accountable, dynamic, and trust-worthy biobanks.
引用
收藏
页数:18
相关论文
共 170 条
[21]   Biobanking research on oncological residual material: a framework between the rights of the individual and the interest of society [J].
Caenazzo, Luciana ;
Tozzo, Pamela ;
Pegoraro, Renzo .
BMC MEDICAL ETHICS, 2013, 14
[22]   Start-up of a clinical sample processing, storage and management platform: organisation and development of the REDinREN Biobank [J].
Calleros, Laura ;
Cortes, Maria A. ;
Luengo, Alicia ;
Mora, Ines ;
Guijarro, Brenda ;
Martin, Paloma ;
Ortiz-Arduan, Alberto ;
Selgas, Rafael ;
Rodriguez-Puyol, Diego ;
Rodriguez-Puyol, Manuel .
NEFROLOGIA, 2012, 32 (01) :28-34
[23]   Implementing Unique Device Identification in Electronic Health Record Systems Organizational, Workflow, and Technological Challenges [J].
Campion, Thomas R. ;
Johnson, Stephen B. ;
Paxton, Elizabeth W. ;
Mushlin, Alvin I. ;
Sedrakyan, Art .
MEDICAL CARE, 2014, 52 (01) :26-31
[24]   Beyond and within public engagement: a broadened approach to engagement in biobanking [J].
Canada, Jose A. ;
Tupasela, Aaro ;
Snell, Karoliina .
NEW GENETICS AND SOCIETY, 2015, 34 (04) :355-376
[25]   One Health and paradigms of public biobanking [J].
Capps, Benjamin ;
Lederman, Zohar .
JOURNAL OF MEDICAL ETHICS, 2015, 41 (03) :258-262
[26]  
Casado da Rocha A, 2012, ESPANOLA INFORMATICA, P38
[27]   A review of the key issues associated with the commercialization of biobanks [J].
Caulfield, Timothy ;
Burningham, Sarah ;
Joly, Yann ;
Master, Zubin ;
Shabani, Mahsa ;
Borry, Pascal ;
Becker, Allan ;
Burgess, Michael ;
Calder, Kathryn ;
Critchley, Christine ;
Edwards, Kelly ;
Fullerton, Stephanie M. ;
Gottweis, Herbert ;
Hyde-Lay, Robyn ;
Illes, Judy ;
Isasi, Rosario ;
Kato, Kazuto ;
Kaye, Jane ;
Knoppers, Bartha ;
Lynch, John ;
McGuire, Amy ;
Meslin, Eric ;
Nicol, Dianne ;
O'Doherty, Kieran ;
Ogbogu, Ubaka ;
Otlowski, Margaret ;
Pullman, Daryl ;
Ries, Nola ;
Scott, Chris ;
Sears, Malcolm ;
Wallace, Helen ;
Zawati, Ma'n H. .
JOURNAL OF LAW AND THE BIOSCIENCES, 2014, 1 (01) :94-110
[28]   An effective multisource informed consent procedure for research and clinical practice: an observational study of patient understanding and awareness of their roles as research stakeholders in a cancer biobank [J].
Cervo, Silvia ;
Rovina, Jane ;
Talamini, Renato ;
Perin, Tiziana ;
Canzonieri, Vincenzo ;
De Paoli, Paolo ;
Steffan, Agostino .
BMC MEDICAL ETHICS, 2013, 14
[29]   Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era [J].
Chalmers, Don ;
Nicol, Dianne ;
Kaye, Jane ;
Bell, Jessica ;
Campbell, Alastair V. ;
Ho, Calvin W. L. ;
Kato, Kazuto ;
Minari, Jusaku ;
Ho, Chih-hsing ;
Mitchell, Colin ;
Molnar-Gabor, Fruzsina ;
Otlowski, Margaret ;
Thiel, Daniel ;
Fullerton, Stephanie M. ;
Whitton, Tess .
BMC MEDICAL ETHICS, 2016, 17
[30]   A Role for Research Ethics Committees in Exchanges of Human Biospecimens Through Material Transfer Agreements [J].
Chalmers, Donald ;
Nicol, Dianne ;
Nicolas, Pilar ;
Zeps, Nikolajs .
JOURNAL OF BIOETHICAL INQUIRY, 2014, 11 (03) :301-306