{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,27]],"date-time":"2026-08-27T23:50:01Z","timestamp":1787874601973,"version":"build-2784847793"},"reference-count":75,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2018,9,13]],"date-time":"2018-09-13T00:00:00Z","timestamp":1536796800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100010661","name":"Horizon 2020 Framework Programme","doi-asserted-by":"publisher","award":["733381"],"award-info":[{"award-number":["733381"]}],"id":[{"id":"10.13039\/100010661","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Crit Care"],"published-print":{"date-parts":[[2018,12]]},"DOI":"10.1186\/s13054-018-2153-3","type":"journal-article","created":{"date-parts":[[2018,9,4]],"date-time":"2018-09-04T12:43:18Z","timestamp":1536064998000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":26,"title":["Ethical aspects of sudden cardiac arrest research using observational data: a narrative review"],"prefix":"10.1186","volume":"22","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0655-0743","authenticated-orcid":false,"given":"Marieke A. R.","family":"Bak","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marieke T.","family":"Blom","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hanno L.","family":"Tan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dick L.","family":"Willems","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2018,9,13]]},"reference":[{"key":"2153_CR1","doi-asserted-by":"publisher","first-page":"1479","DOI":"10.1016\/j.resuscitation.2010.08.006","volume":"81","author":"J Berdowski","year":"2010","unstructured":"Berdowski J, Berg RA, Tijssen JG, Koster RW. Global incidences of out-of-hospital cardiac arrest and survival rates: systematic review of 67 prospective studies. Resuscitation. 2010;81:1479\u201387.","journal-title":"Resuscitation"},{"key":"2153_CR2","doi-asserted-by":"publisher","first-page":"615","DOI":"10.1016\/S0749-0704(05)70075-0","volume":"15","author":"P Pronovost","year":"1999","unstructured":"Pronovost P, Angus DC. Using large-scale databases to measure outcomes in critical care. Crit Care Clin. 1999;15:615\u201331.","journal-title":"Crit Care Clin"},{"key":"2153_CR3","doi-asserted-by":"publisher","first-page":"A3","DOI":"10.1186\/1757-7241-22-S1-A3","volume":"22","author":"B McNally","year":"2014","unstructured":"McNally B. The importance of cardiac arrest registries. Scand J Trauma Resusc Emerg Med. 2014;22:A3.","journal-title":"Scand J Trauma Resusc Emerg Med"},{"key":"2153_CR4","doi-asserted-by":"publisher","first-page":"1887","DOI":"10.1056\/NEJM200006223422507","volume":"342","author":"J Concato","year":"2000","unstructured":"Concato J, Shah N, Horwitz RI. Randomized, controlled trials, observational studies, and the hierarchy of research designs. N Engl J Med. 2000;342:1887\u201392.","journal-title":"N Engl J Med"},{"key":"2153_CR5","doi-asserted-by":"publisher","first-page":"49","DOI":"10.2147\/POR.S137701","volume":"8","author":"MS Barnish","year":"2017","unstructured":"Barnish MS, Turner S. The value of pragmatic and observational studies in health care and public health. Pragmat Obs Res. 2017;8:49.","journal-title":"Pragmat Obs Res"},{"key":"2153_CR6","doi-asserted-by":"publisher","first-page":"S58","DOI":"10.1016\/j.ihj.2013.11.004","volume":"66","author":"SG Priori","year":"2014","unstructured":"Priori SG. Genetic testing to predict sudden cardiac death: current perspectives and future goals. Indian Heart J. 2014;66:S58\u201360.","journal-title":"Indian Heart J"},{"key":"2153_CR7","first-page":"1","volume":"60","author":"B McNally","year":"2011","unstructured":"McNally B, Robb R, Mehta M, Vellano K, Valderrama AL, Yoon PW, et al. Out-of-hospital cardiac arrest surveillance\u2014cardiac arrest registry to enhance survival (CARES), United States, October 1, 2005\u2013December 31, 2010. MMWR Surveill Summ. 2011;60:1\u201319.","journal-title":"MMWR Surveill Summ"},{"key":"2153_CR8","doi-asserted-by":"publisher","first-page":"890","DOI":"10.1111\/j.1553-2712.2011.01132.x","volume":"18","author":"MEH Ong","year":"2011","unstructured":"Ong MEH, Shin SD, Tanaka H, Ma MHM, Khruekarnchana P, Hisamuddin N, et al. Pan-Asian resuscitation outcomes study (PAROS): rationale, methodology, and implementation. Acad Emerg Med. 2011;18:890\u20137.","journal-title":"Acad Emerg Med"},{"key":"2153_CR9","doi-asserted-by":"publisher","first-page":"e011027","DOI":"10.1136\/bmjopen-2016-011027","volume":"6","author":"B Beck","year":"2016","unstructured":"Beck B, Bray J, Smith K, Walker T, Grantham H, Hein C, et al. Establishing the Aus-ROC Australian and New Zealand out-of-hospital cardiac arrest Epistry. BMJ Open. 2016;6:e011027.","journal-title":"BMJ Open"},{"key":"2153_CR10","doi-asserted-by":"publisher","first-page":"7","DOI":"10.1016\/j.resuscitation.2017.12.011","volume":"124","author":"JP Empana","year":"2018","unstructured":"Empana JP, Blom MT, B\u04e7ttiger BW, Dagres N, Dekker JM, Gislason G, et al. Determinants of occurrence and survival after sudden cardiac arrest\u2013a European perspective: the ESCAPE-NET project. Resuscitation. 2018;124:7\u201313.","journal-title":"Resuscitation"},{"key":"2153_CR11","doi-asserted-by":"publisher","first-page":"e000112","DOI":"10.1136\/openhrt-2014-000112","volume":"1","author":"MT Blom","year":"2014","unstructured":"Blom MT, Van Hoeijen DA, Bardai A, Berdowski J, Souverein PC, De Bruin ML, et al. Genetic, clinical and pharmacological determinants of out-of-hospital cardiac arrest: rationale and outline of the AmsteRdam resuscitation studies (ARREST) registry. Open Heart. 2014;1:e000112.","journal-title":"Open Heart"},{"key":"2153_CR12","doi-asserted-by":"publisher","first-page":"1087","DOI":"10.1111\/j.1553-2712.1997.tb03684.x","volume":"4","author":"SA Waien","year":"1997","unstructured":"Waien SA. Linking large administrative databases: a method for conducting emergency medical services cohort studies using existing data. Acad Emerg Med. 1997;4:1087\u201395.","journal-title":"Acad Emerg Med"},{"key":"2153_CR13","doi-asserted-by":"publisher","first-page":"350","DOI":"10.1038\/nrcardio.2016.42","volume":"13","author":"JS Rumsfeld","year":"2016","unstructured":"Rumsfeld JS, Joynt KE, Maddox TM. Big data analytics to improve cardiovascular care: promise and challenges. Nat Rev Cardiol. 2016;13:350.","journal-title":"Nat Rev Cardiol"},{"key":"2153_CR14","doi-asserted-by":"publisher","first-page":"2167","DOI":"10.4172\/2167-1168.1000393","volume":"6","author":"CA Alexander","year":"2017","unstructured":"Alexander CA, Wang L. Big data analytics in heart attack prediction. J Nurs Care. 2017;6:2167\u20131168.","journal-title":"J Nurs Care"},{"key":"2153_CR15","doi-asserted-by":"publisher","first-page":"303","DOI":"10.1007\/s11948-015-9652-2","volume":"22","author":"BD Mittelstadt","year":"2016","unstructured":"Mittelstadt BD, Floridi L. The ethics of big data: current and foreseeable issues in biomedical contexts. Sci Eng Ethics. 2016;22:303\u201341.","journal-title":"Sci Eng Ethics"},{"key":"2153_CR16","doi-asserted-by":"publisher","first-page":"118","DOI":"10.1016\/S0196-0644(05)80264-1","volume":"22","author":"BL Miller","year":"1993","unstructured":"Miller BL. The ethics of cardiac arrest research. Ann Emerg Med. 1993;22:118\u201324.","journal-title":"Ann Emerg Med"},{"key":"2153_CR17","doi-asserted-by":"publisher","first-page":"120","DOI":"10.1007\/s00134-014-3557-4","volume":"41","author":"AO Petri\u015f","year":"2015","unstructured":"Petri\u015f AO, Cimpoe\u015fu DC, Ungureanu D. What\u2019s new in ethics of cardio-pulmonary resuscitation research: too little time and too many rules? Intensive Care Med. 2015;41:120\u20132.","journal-title":"Intensive Care Med"},{"key":"2153_CR18","doi-asserted-by":"publisher","first-page":"S3","DOI":"10.1097\/TA.0b013e31828fa3a0","volume":"75","author":"EE Fox","year":"2013","unstructured":"Fox EE, Bulger EM, Dickerson AS, Del Junco DJ, Klotz P, Podbielski J, et al. Waiver of consent in non-interventional, observational emergency research: the PROMMTT experience. J Trauma Acute Care Surg. 2013;75:S3.","journal-title":"J Trauma Acute Care Surg"},{"key":"2153_CR19","first-page":"391","volume":"522","author":"Anonymous","year":"2015","unstructured":"Anonymous. Data overprotection. Nature. 2015;522:391\u20132.","journal-title":"Nature"},{"key":"2153_CR20","doi-asserted-by":"publisher","first-page":"709","DOI":"10.3332\/ecancer.2017.709","volume":"11","author":"G Chassang","year":"2017","unstructured":"Chassang G. The impact of the EU general data protection regulation on scientific research. Ecancermedicalscience. 2017;11:709.","journal-title":"Ecancermedicalscience"},{"key":"2153_CR21","doi-asserted-by":"publisher","first-page":"272","DOI":"10.1080\/10903120701348123","volume":"11","author":"MC Morris","year":"2007","unstructured":"Morris MC, Mechem CC, Berg RA, Bobrow BJ, Burns S, Clark L, et al. Impact of the privacy rule on the study of out-of-hospital pediatric cardiac arrest. Prehosp Emerg Care. 2007;11:272\u20137.","journal-title":"Prehosp Emerg Care"},{"key":"2153_CR22","doi-asserted-by":"publisher","first-page":"871","DOI":"10.1503\/cmaj.061353","volume":"178","author":"AS Gershon","year":"2008","unstructured":"Gershon AS, Tu JV. The effect of privacy legislation on observational research. CMAJ. 2008;178:871\u20133.","journal-title":"CMAJ"},{"key":"2153_CR23","doi-asserted-by":"publisher","first-page":"43","DOI":"10.1163\/15718093-12460346","volume":"25","author":"M Mostert","year":"2017","unstructured":"Mostert M, Bredenoord AL, van der Sloot B, van Delden JJ. From privacy to data protection in the EU: implications for big data Health Research. Eur J Health Law. 2017;25:43\u201355.","journal-title":"Eur J Health Law"},{"key":"2153_CR24","first-page":"323","volume":"4","author":"J Rachels","year":"1975","unstructured":"Rachels J. Why privacy is important. Philos Public Aff. 1975;4:323\u201333.","journal-title":"Philos Public Aff"},{"key":"2153_CR25","first-page":"2","volume-title":"Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research","author":"Institute of Medicine (US) Committee on Health Research and the Privacy of Health Information","year":"2009","unstructured":"Institute of Medicine (US) Committee on Health Research and the Privacy of Health Information. The value and importance of health information privacy. In: Nass SJ, Levit LA, Gostin LO, editors. Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research. Washington (DC): National Academies Press (US); 2009. p. 2."},{"key":"2153_CR26","doi-asserted-by":"publisher","first-page":"129","DOI":"10.1007\/s10676-017-9421-9","volume":"19","author":"JC Buitelaar","year":"2017","unstructured":"Buitelaar JC. Post-mortem privacy and informational self-determination. Ethics Inf Technol. 2017;19:129\u201342.","journal-title":"Ethics Inf Technol"},{"key":"2153_CR27","unstructured":"Laurie G, Jones KH, Stevens L, Dobbs C. A review of evidence relating to harm resulting from uses of health and biomedical data. London: Nuffield Council on Bioethics; 2015."},{"key":"2153_CR28","doi-asserted-by":"publisher","first-page":"1553","DOI":"10.1038\/ejhg.2016.52","volume":"24","author":"C Molster","year":"2016","unstructured":"Molster C, Taruscio D, Schaefer F, Lochm\u00fcller H, Dawkins H, Posada M, et al. The risk of re-identification versus the need to identify individuals in rare disease research. Eur J Hum Genet. 2016;24:1553.","journal-title":"Eur J Hum Genet"},{"key":"2153_CR29","doi-asserted-by":"publisher","first-page":"433","DOI":"10.1146\/annurev-genom-090711-163800","volume":"13","author":"M Otlowski","year":"2012","unstructured":"Otlowski M, Taylor S, Bombard Y. Genetic discrimination: international perspectives. Annu Rev Genomics Hum Genet. 2012;13:433\u201354.","journal-title":"Annu Rev Genomics Hum Genet"},{"key":"2153_CR30","doi-asserted-by":"publisher","first-page":"1018","DOI":"10.1038\/ejhg.2012.53","volume":"20","author":"E Geelen","year":"2012","unstructured":"Geelen E, Horstman K, Marcelis CL, Doevendans PA, Van Hoyweghen I. Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts. Eur J Hum Genet. 2012;20:1018\u201323.","journal-title":"Eur J Hum Genet"},{"key":"2153_CR31","doi-asserted-by":"publisher","first-page":"e001442","DOI":"10.1161\/CIRCGENETICS.116.001442","volume":"10","author":"S Mohammed","year":"2017","unstructured":"Mohammed S, Lim Z, Dean PH, Potts JE, Tang JN, Etheridge SP, et al. Genetic insurance discrimination in sudden arrhythmia death syndromes. Circ Cardiovasc Genet. 2017;10:e001442.","journal-title":"Circ Cardiovasc Genet"},{"key":"2153_CR32","doi-asserted-by":"publisher","first-page":"1705","DOI":"10.1503\/cmaj.101512","volume":"183","author":"K Reinier","year":"2011","unstructured":"Reinier K, Thomas E, Andrusiek DL, Aufderheide TP, Brooks SC, Callaway CW, et al. Socioeconomic status and incidence of sudden cardiac arrest. Can Med Assoc J. 2011;183:1705\u201312.","journal-title":"Can Med Assoc J"},{"key":"2153_CR33","doi-asserted-by":"crossref","first-page":"255","DOI":"10.5694\/j.1326-5377.2009.tb02778.x","volume":"191","author":"LA Keogh","year":"2009","unstructured":"Keogh LA, van Vliet CM, Studdert DM, Maskiell JA, Macrae FA, St John DJ, et al. Is uptake of genetic testing for colorectal cancer influenced by knowledge of insurance implications? Med J Aust. 2009;191:255\u20138.","journal-title":"Med J Aust"},{"key":"2153_CR34","doi-asserted-by":"publisher","first-page":"1170","DOI":"10.1038\/sj.ejhg.5201690","volume":"14","author":"BM Knoppers","year":"2006","unstructured":"Knoppers BM, Joly Y, Simard J, Durocher F. The emergence of an ethical duty to disclose genetic research results: international perspectives. Eur J Hum Genet. 2006;14:1170\u20138.","journal-title":"Eur J Hum Genet"},{"key":"2153_CR35","doi-asserted-by":"publisher","first-page":"152","DOI":"10.1038\/nrg2302","volume":"9","author":"AL McGuire","year":"2008","unstructured":"McGuire AL, Caulfield T, Cho MK. Research ethics and the challenge of whole-genome sequencing. Nat Rev Genet. 2008;9:152\u20136.","journal-title":"Nat Rev Genet"},{"key":"2153_CR36","doi-asserted-by":"publisher","first-page":"199","DOI":"10.1111\/j.1399-0004.2006.00581.x","volume":"69","author":"D Pullman","year":"2006","unstructured":"Pullman D, Hodgkinson K. Genetic knowledge and moral responsibility: ambiguity at the interface of genetic research and clinical practice. Clin Genet. 2006;69:199\u2013203.","journal-title":"Clin Genet"},{"key":"2153_CR37","doi-asserted-by":"publisher","first-page":"2701","DOI":"10.1001\/jama.283.20.2701","volume":"283","author":"EJ Emanuel","year":"2000","unstructured":"Emanuel EJ, Wendler D, Grady C. What makes clinical research ethical? JAMA. 2000;283:2701\u201311.","journal-title":"JAMA"},{"key":"2153_CR38","doi-asserted-by":"publisher","first-page":"444","DOI":"10.1016\/j.annemergmed.2004.11.011","volume":"45","author":"D Badcock","year":"2005","unstructured":"Badcock D, Kelly AM, Kerr D, Reade T. The quality of medical record review studies in the international emergency medicine literature. Ann Emerg Med. 2005;45:444\u20137.","journal-title":"Ann Emerg Med"},{"key":"2153_CR39","doi-asserted-by":"publisher","first-page":"292","DOI":"10.1016\/j.annemergmed.2014.03.025","volume":"64","author":"AH Kaji","year":"2014","unstructured":"Kaji AH, Schriger D, Green S. Looking through the retrospectoscope: reducing bias in emergency medicine chart review studies. Ann Emerg Med. 2014;64:292\u20138.","journal-title":"Ann Emerg Med"},{"key":"2153_CR40","doi-asserted-by":"publisher","first-page":"1599","DOI":"10.1016\/j.resuscitation.2014.06.031","volume":"85","author":"C Nishiyama","year":"2014","unstructured":"Nishiyama C, Brown SP, May S, Iwami T, Koster RW, Beesems SG, et al. Apples to apples or apples to oranges? International variation in reporting of process and outcome of care for out-of-hospital cardiac arrest. Resuscitation. 2014;85:1599\u2013609.","journal-title":"Resuscitation"},{"key":"2153_CR41","doi-asserted-by":"publisher","first-page":"467","DOI":"10.1097\/MCC.0000000000000228","volume":"21","author":"AB Docherty","year":"2015","unstructured":"Docherty AB, Lone NI. Exploiting big data for critical care research. Curr Opin Crit Care. 2015;21:467\u201372.","journal-title":"Curr Opin Crit Care"},{"key":"2153_CR42","doi-asserted-by":"publisher","first-page":"1289","DOI":"10.1111\/acem.12270","volume":"20","author":"TP Aufderheide","year":"2013","unstructured":"Aufderheide TP, Nolan JP, Jacobs IG, Belle G, Bobrow BJ, Marshall J, et al. Global health and emergency care: a resuscitation research agenda\u2014part 1. Acad Emerg Med. 2013;20:1289\u201396.","journal-title":"Acad Emerg Med"},{"key":"2153_CR43","doi-asserted-by":"publisher","first-page":"55","DOI":"10.3389\/fgene.2015.00055","volume":"6","author":"E Morini","year":"2015","unstructured":"Morini E, Sangiuolo F, Caporossi D, Novelli G, Amati F. Application of next generation sequencing for personalized medicine for sudden cardiac death. Front Genet. 2015;6:55.","journal-title":"Front Genet"},{"key":"2153_CR44","doi-asserted-by":"publisher","first-page":"689","DOI":"10.1001\/jamacardio.2017.0266","volume":"2","author":"RJ Myerburg","year":"2017","unstructured":"Myerburg RJ, Goldberger JJ. Sudden cardiac arrest risk assessment: population science and the individual risk mandate. JAMA Cardiol. 2017;2:689\u201394.","journal-title":"JAMA Cardiol"},{"key":"2153_CR45","first-page":"77","volume-title":"The ethics of biomedical big data","author":"K Hoeyer","year":"2016","unstructured":"Hoeyer K. Denmark at a crossroad? Intensified data sourcing in a research radical country. In: Mittelstadt BD, Floridi L, editors. The ethics of biomedical big data. Cham: Springer International Publishing; 2016. p. 77\u201393."},{"key":"2153_CR46","doi-asserted-by":"publisher","first-page":"655","DOI":"10.1056\/NEJMsa1507092","volume":"375","author":"AK Manrai","year":"2016","unstructured":"Manrai AK, Funke BH, Rehm HL, Olesen MS, Maron BA, Szolovits P, et al. Genetic misdiagnoses and the potential for health disparities. N Engl J Med. 2016;375:655\u201365.","journal-title":"N Engl J Med"},{"key":"2153_CR47","doi-asserted-by":"publisher","first-page":"318","DOI":"10.1186\/1471-2458-7-318","volume":"7","author":"KM Boyd","year":"2007","unstructured":"Boyd KM. Ethnicity and the ethics of data linkage. BMC Public Health. 2007;7:318.","journal-title":"BMC Public Health"},{"key":"2153_CR48","volume-title":"International ethical guidelines for epidemiological studies","author":"Council for International Organizations of Medical Sciences","year":"2009","unstructured":"Council for International Organizations of Medical Sciences. International ethical guidelines for epidemiological studies. Geneva: Council for International Organizations of Medical Sciences; 2009."},{"key":"2153_CR49","doi-asserted-by":"publisher","first-page":"198","DOI":"10.1136\/emj.18.3.198","volume":"18","author":"BA Fo\u00ebx","year":"2001","unstructured":"Fo\u00ebx BA. The problem of informed consent in emergency medicine research. Emerg Med J. 2001;18:198\u2013204.","journal-title":"Emerg Med J"},{"key":"2153_CR50","doi-asserted-by":"publisher","first-page":"3","DOI":"10.1016\/j.resuscitation.2004.02.013","volume":"62","author":"G Nichol","year":"2004","unstructured":"Nichol G, Huszti E, Rokosh J, Dumbrell A, McGowan J, Becker L. Impact of informed consent requirements on cardiac arrest research in the United States: exception from consent or from research? Resuscitation. 2004;62:3\u201323.","journal-title":"Resuscitation"},{"key":"2153_CR51","unstructured":"The Academy of Medical Sciences. Personal data for public good: using health information in medical research. London: The Academy of Medical Sciences; 2006."},{"key":"2153_CR52","doi-asserted-by":"publisher","first-page":"894","DOI":"10.1007\/s00134-007-0580-8","volume":"33","author":"TC Jansen","year":"2007","unstructured":"Jansen TC, Kompanje EJO, Druml C, Menon DK, Wiedermann CJ, Bakker J. Deferred consent in emergency intensive care research: what if the patient dies early? Use the data or not? Intensive Care Med. 2007;33:894\u2013900.","journal-title":"Intensive Care Med"},{"key":"2153_CR53","doi-asserted-by":"publisher","first-page":"1414","DOI":"10.1056\/NEJMsa031697","volume":"350","author":"JV Tu","year":"2004","unstructured":"Tu JV, Willison DJ, Silver FL, Fang J, Richards JA, Laupacis A, Kapral MK. Impracticability of informed consent in the registry of the Canadian stroke network. N Engl J Med. 2004;350:1414\u201321.","journal-title":"N Engl J Med"},{"key":"2153_CR54","first-page":"77","volume":"20","author":"J Fang","year":"2011","unstructured":"Fang J, Kapral MK, Richards J, Robertson A, Stamplecoski M, Silver FL. The registry of Canadian stroke network: an evolving methodology. Acta Neurol Taiwanica. 2011;20:77\u201384.","journal-title":"Acta Neurol Taiwanica"},{"key":"2153_CR55","doi-asserted-by":"publisher","first-page":"39","DOI":"10.1080\/23294515.2015.1039148","volume":"7","author":"BD Freeman","year":"2016","unstructured":"Freeman BD, Bolcic-Jankovic D, Kennedy CR, LeBlanc J, Eastman A, Barillas J, et al. Perspectives of decisional surrogates and patients regarding critical illness genetic research. AJOB Empir Bioeth. 2016;7:39\u201347.","journal-title":"AJOB Empir Bioeth"},{"key":"2153_CR56","doi-asserted-by":"publisher","first-page":"199","DOI":"10.1007\/978-3-319-33525-4_9","volume-title":"The ethics of biomedical big data","author":"M Christen","year":"2016","unstructured":"Christen M, Domingo-Ferrer J, Draganski B, Spranger T, Walter H. On the compatibility of big data driven research and informed consent: the example of the human brain project. In: Mittelstadt BD, Floridi L, editors. The ethics of biomedical big data. Cham: Springer International Publishing; 2016. p. 199\u2013218."},{"key":"2153_CR57","doi-asserted-by":"publisher","first-page":"186","DOI":"10.1136\/ip.2003.004580","volume":"10","author":"DE Clark","year":"2004","unstructured":"Clark DE. Practical introduction to record linkage for injury research. Inj Prev. 2004;10:186\u201391.","journal-title":"Inj Prev"},{"key":"2153_CR58","doi-asserted-by":"publisher","first-page":"321","DOI":"10.1126\/science.1229566","volume":"339","author":"M Gymrek","year":"2013","unstructured":"Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y. Identifying personal genomes by surname inference. Science. 2013;339:321\u20134.","journal-title":"Science"},{"key":"2153_CR59","doi-asserted-by":"publisher","first-page":"5","DOI":"10.2307\/3564363","volume":"2","author":"N Fost","year":"1980","unstructured":"Fost N, Robertson JA. Deferring consent with incompetent patients in an intensive care unit. IRB. 1980;2:5.","journal-title":"IRB"},{"key":"2153_CR60","doi-asserted-by":"publisher","first-page":"403","DOI":"10.1111\/acem.12117","volume":"20","author":"SR Offerman","year":"2013","unstructured":"Offerman SR, Nishijima DK, Ballard DW, Chetipally UK, Vinson DR, Holmes JF. The use of delayed telephone informed consent for observational emergency medicine research is ethical and effective. Acad Emerg Med. 2013;20:403\u20137.","journal-title":"Acad Emerg Med"},{"key":"2153_CR61","doi-asserted-by":"publisher","first-page":"415","DOI":"10.1007\/s00439-011-1049-y","volume":"130","author":"AM Tass\u00e9","year":"2011","unstructured":"Tass\u00e9 AM. Biobanking and deceased persons. Hum Genet. 2011;130:415\u201323.","journal-title":"Hum Genet"},{"key":"2153_CR62","doi-asserted-by":"crossref","first-page":"173","DOI":"10.1159\/000082256","volume":"7","author":"JKM Gevers","year":"2004","unstructured":"Gevers JKM. Genetic databases and consent for use of medical records. Public Health Genomics. 2004;7:173\u20135.","journal-title":"Public Health Genomics"},{"key":"2153_CR63","doi-asserted-by":"publisher","first-page":"143","DOI":"10.1353\/ken.2004.0025","volume":"14","author":"MR Wicclair","year":"2004","unstructured":"Wicclair MR, DeVita MA. Oversight of research involving the dead. Kennedy Inst Ethics J. 2004;14:143\u201364.","journal-title":"Kennedy Inst Ethics J"},{"key":"2153_CR64","doi-asserted-by":"publisher","first-page":"501","DOI":"10.1007\/s11673-017-9809-6","volume":"14","author":"E Vayena","year":"2017","unstructured":"Vayena E, Blasimme A. Biomedical big data: new models of control over access. Use and Governance J Bioeth Inq. 2017;14:501\u201313.","journal-title":"Use and Governance J Bioeth Inq"},{"key":"2153_CR65","doi-asserted-by":"crossref","first-page":"690","DOI":"10.1111\/jlme.12312","volume":"43","author":"A Thorogood","year":"2015","unstructured":"Thorogood A, Zawati MNH. International guidelines for privacy in genomic biobanking (or the unexpected virtue of pluralism). J Law Med Ethics. 2015;43:690\u2013702.","journal-title":"J Law Med Ethics"},{"key":"2153_CR66","doi-asserted-by":"publisher","first-page":"71","DOI":"10.1186\/s13073-016-0323-y","volume":"8","author":"C Auffray","year":"2016","unstructured":"Auffray C, Balling R, Barroso I, Bencze L, Benson M, Bergeron J, et al. Making sense of big data in health research: towards an EU action plan. Genome Med. 2016;8:71.","journal-title":"Genome Med"},{"key":"2153_CR67","doi-asserted-by":"publisher","first-page":"1571","DOI":"10.1097\/CCM.0000000000002557","volume":"45","author":"MG Duvall","year":"2017","unstructured":"Duvall MG, Burns JP. Better late than never? Deferred consent for minimal risk research in the ICU. Crit Care Med. 2017;45:1571\u20132.","journal-title":"Crit Care Med"},{"key":"2153_CR68","first-page":"191","volume":"17","author":"Organisation for Economic Co-operation and Development","year":"2010","unstructured":"Organisation for Economic Co-operation and Development. OECD guidelines on human biobanks and genetic research databases. Eur J Health Law. 2010;17:191\u2013204.","journal-title":"Eur J Health Law"},{"key":"2153_CR69","doi-asserted-by":"publisher","first-page":"895","DOI":"10.1007\/s00439-014-1432-6","volume":"133","author":"BM Knoppers","year":"2014","unstructured":"Knoppers BM, Harris JR, Budin-Lj\u00f8sne I, Dove ES. A human rights approach to an international code of conduct for genomic and clinical data sharing. Hum Genet. 2014;133:895\u2013903.","journal-title":"Hum Genet"},{"key":"2153_CR70","doi-asserted-by":"publisher","first-page":"1144","DOI":"10.1186\/1471-2458-14-1144","volume":"14","author":"WG van Panhuis","year":"2014","unstructured":"van Panhuis WG, Paul P, Emerson C, Grefenstette J, Wilder R, Herbst AJ, et al. A systematic review of barriers to data sharing in public health. BMC Public Health. 2014;14:1144.","journal-title":"BMC Public Health"},{"key":"2153_CR71","unstructured":"Davidson S, McLean C, Treanor S, Aitken M, Cunningham-Burley S, Laurie G, et al. Public acceptability of data sharing between the public, private and third sectors for research purposes. Edinburgh: Scottish Government Social Research; 2013."},{"key":"2153_CR72","unstructured":"The Washington Post. Henrietta Lacks\u2019s family wants compensation for her cells. 2017. https:\/\/www.washingtonpost.com\/local\/henrietta-lackss-family-wants-compensation-for-her-cells\/2017\/02\/14\/816481ba-f302-11e6-b9c9-e83fce42fb61_story.html?noredirect=on&utm_term=.fcaedb2b88b0 . Accessed 22 June 2018."},{"key":"2153_CR73","first-page":"205395171668849","volume":"4","author":"P Vezyridis","year":"2017","unstructured":"Vezyridis P, Timmons S. Understanding the care.data conundrum: New information flows for economic growth. BD&S. 2017;4:2053951716688490.","journal-title":"BD&S"},{"key":"2153_CR74","doi-asserted-by":"crossref","unstructured":"Nissenbaum H. Privacy in context: technology, policy, and the integrity of social life. Redwood City: Stanford University Press; 2009.","DOI":"10.1515\/9780804772891"},{"key":"2153_CR75","doi-asserted-by":"publisher","first-page":"71","DOI":"10.1093\/medlaw\/fws040","volume":"21","author":"B Prainsack","year":"2013","unstructured":"Prainsack B, Buyx A. A solidarity-based approach to the governance of research biobanks. Med Law Rev. 2013;21:71\u201391.","journal-title":"Med Law Rev"}],"container-title":["Critical Care"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s13054-018-2153-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/article\/10.1186\/s13054-018-2153-3\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s13054-018-2153-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,8,31]],"date-time":"2022-08-31T14:13:57Z","timestamp":1661955237000},"score":1,"resource":{"primary":{"URL":"https:\/\/ccforum.biomedcentral.com\/articles\/10.1186\/s13054-018-2153-3"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,9,13]]},"references-count":75,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2018,12]]}},"alternative-id":["2153"],"URL":"https:\/\/doi.org\/10.1186\/s13054-018-2153-3","relation":{},"ISSN":["1364-8535"],"issn-type":[{"value":"1364-8535","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,9,13]]},"assertion":[{"value":"20 April 2018","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"7 August 2018","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"13 September 2018","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Not applicable.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"All authors report grants from Horizon 2020 during the conduct of the study.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Publisher\u2019s Note"}}],"article-number":"212"}}