{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T15:36:26Z","timestamp":1780328186782,"version":"3.54.1"},"reference-count":18,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2004,5,1]],"date-time":"2004-05-01T00:00:00Z","timestamp":1083369600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Scand J Public Health"],"published-print":{"date-parts":[[2004,5]]},"abstract":"<jats:p>Aims: The procurement and usage of tissue samples has begun receiving increasing legal and ethical attention. The authors' aim was to develop an empirically based understanding of public attitudes to the use of tissue for research. Method: A questionnaire was distributed to a randomized sample (n=1,000) of the population in the age group 18 - 85 in V\u00e4sterbotten County, Sweden. Results: The response rate was approximately 60%. There was a general acceptance of genetic research based on biobank material (71%) but, though it is often a prerequisite for tissue-based research, a majority (62%) would not allow researchers to examine their healthcare records without specific consent. A majority (66.8%) accepted surrogate decisions by research ethical committees; 48% of the respondents estimated that they would feel respected if they were notified each time a sample was used. When compared and ranked with other issues, informed consent was a principal concern to a minority (4%) only. Should research efforts generate information on future health risks, a majority (55%) would want to be told only if treatment was available. Conclusion: Though genetic research in bioethical debate is often viewed as a potential threat to the integrity of the donor, the confidentiality of medical records still seems to concern donors more. Research ethical committees have support in the majority of the population for some surrogate decisions. The current emphasis on the question of informed consent in policy making for biobank-based research does not seem to be reflected unambiguously in the concerns of the general public.<\/jats:p>","DOI":"10.1080\/14034940310019506","type":"journal-article","created":{"date-parts":[[2004,4,30]],"date-time":"2004-04-30T00:21:42Z","timestamp":1083284502000},"page":"224-229","source":"Crossref","is-referenced-by-count":147,"title":["Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research"],"prefix":"10.1177","volume":"32","author":[{"given":"Klaus","family":"Hoeyer","sequence":"first","affiliation":[{"name":"Medical Ethics, Department of Health Services Research, University of Copenhagen, Denmark,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bert-Ove","family":"Olofsson","sequence":"additional","affiliation":[{"name":"Medicine, Department of Public Health and Clinical Medicine, Ume\u00e5 University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tom","family":"Mj\u00f6rndal","sequence":"additional","affiliation":[{"name":"Department of Pharmacology and Clinical Neuroscience, Ume\u00e5 University, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Niels","family":"Lyn\u00f6e","sequence":"additional","affiliation":[{"name":"Medical Ethics, Department of Health Services Research, University of Copenhagen, Denmark, LIME, Karolinska Institute, Stockholm, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2004,5,1]]},"reference":[{"key":"atypb1","volume-title":"A story of biotechnology","author":"Rabinow P.","year":"1996"},{"key":"atypb2","unstructured":"Hansson MG, Levin M, editors. Biobanks as resources for health. Uppsala: Research Program Ethics in Biomedicine, 2003."},{"key":"atypb3","unstructured":"Indenrigs- og Sundhedsministeriet. Redeg\u00f8relse om Biobanker [Report on Biobanks]. Bet\u00e6nkning 1414, 1 - 286. Copenhagen, Inden- og Sundhedsministeriet, 2002."},{"key":"atypb4","unstructured":"Norges Offentlige Utredninger . Biobanker. Innhenting, oppbevaring, bruk og destruksjon av humant biologisk materiale [Biobanks. Procurement, Storage, Usage and Destruction of Human Biological Material]. NOU 2001: 19."},{"key":"atypb5","volume-title":"Declaration of Helsinki","author":"World Medical Association.","year":"2002"},{"key":"atypb6","first-page":"297","year":"2002","journal-title":"Lag"},{"key":"atypb7","unstructured":"Swedish Medical Research Council. Guidelines for ethical evaluation of medical research involving human subjects: the policy and organization of research ethics in Sweden. MRC Reports 2, 1 - 90. Stockholm: Swedish Medical Research Council , 1999."},{"key":"atypb8","unstructured":"Ring L., Lindblad \u00c5K Public and patient perception of biobanks and informed consent. In: Hansson MG, Levin M, editors. Biobanks as resources for health. Uppsala : Research Program Ethics in Biomedicine, 2003: 197 - 206."},{"key":"atypb9","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.325.7365.634"},{"key":"atypb10","doi-asserted-by":"publisher","DOI":"10.1080\/1463677032000147199"},{"key":"atypb11","first-page":"171","volume":"11","author":"Lynoe N.","year":"1997","journal-title":"Int J Pharmaceut Med"},{"key":"atypb12","doi-asserted-by":"publisher","DOI":"10.1111\/1467-8322.00129"},{"key":"atypb13","unstructured":"Merz JF, Sankar P. DNA banking: An empirical study of a proposed consent form. In: Weir RF, editor. Stored tissue samples: ethical, legal, and public policy implications. Iowa City : University of Iowa Press, 1998 : 198 - 225."},{"key":"atypb14","unstructured":"Chadwick R. Informed consent and genetic research. In: Doyal L, Tobias J, editors. Informed consent in medical research. London: BMJ Books, 2001: 203 - 10."},{"key":"atypb15","first-page":"1908","volume":"100","author":"Werk\u00f6 L.","year":"2003","journal-title":"L\u00e4kartidningen"},{"key":"atypb16","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.325.7365.648"},{"key":"atypb17","volume-title":"Ambiguous gifts: public anxiety, informed consent and commercial genetic biobank research","author":"Hoeyer K.","year":"2004"},{"key":"atypb18","author":"Merz JF","year":"2003","journal-title":"Soc Sci Med"}],"container-title":["Scandinavian Journal of Public Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1080\/14034940310019506","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1080\/14034940310019506","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T09:13:45Z","timestamp":1777626825000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1080\/14034940310019506"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2004,5]]},"references-count":18,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2004,5]]}},"alternative-id":["10.1080\/14034940310019506"],"URL":"https:\/\/doi.org\/10.1080\/14034940310019506","relation":{},"ISSN":["1403-4948","1651-1905"],"issn-type":[{"value":"1403-4948","type":"print"},{"value":"1651-1905","type":"electronic"}],"subject":[],"published":{"date-parts":[[2004,5]]}}}