Coding and Consent: Moral Challenges of the Database Project in Iceland.
A major moral problem in relation to the deCODE genetics database project in Iceland is that the heavy emphasis placed on technical security of healthcare information has precluded discussion about the issue of consent for participation in the database. On the other hand, critics who have emphasised...
| Publicado en: | Bioethics Vol. 18; no. 1; pp. 27 - 50 |
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| Autor principal: | |
| Formato: | research Journal Article |
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Wiley-Blackwell
Feb2004
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=106080778&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 106080778 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 02699702 6PJ jtl: Bioethics issn: 02699702 maglogo: Y pubinfo: dt: Feb2004 vid: 18 iid: 1 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 106080778 106080778 2009392173 10.1111/j.1467-8519.2004.00377.x NLM15168697 106080778 ppf: 27 ppct: 23 formats: fmt: @attributes: type: P tig: atl: Coding and Consent: Moral Challenges of the Database Project in Iceland. aug: au: Árnason V sug: subj: Consent Ethical Issues Consent Legislation and Jurisprudence Genetic Research Ethical Issues Resource Databases Consent Genetic Privacy Legislation and Jurisprudence Genetic Research Legislation and Jurisprudence Iceland Industry Medical Records Pedigree Human ab: A major moral problem in relation to the deCODE genetics database project in Iceland is that the heavy emphasis placed on technical security of healthcare information has precluded discussion about the issue of consent for participation in the database. On the other hand, critics who have emphasised the issue of consent have most often demanded that informed consent for participation in research be obtained. While I think that individual consent is of major significance, I argue that this demand for informed consent is neither suitable nor desirable in this case. I distinguish between three aspects of the database and show that different types of consent are appropriate for each. In particular, I describe the idea of a written authorisation based on general information about the database as an alternative to informed consent and presumed consent in database research. pubtype: Academic Journal doctype: research Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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