Literature DB >> 15168697

Coding and consent: moral challenges of the database project in Iceland.

Vilhjalmur Arnason1.   

Abstract

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.

Keywords:  Analytical Approach; Biomedical and Behavioral Research; Genetics and Reproduction; deCode Genetics

Mesh:

Year:  2004        PMID: 15168697     DOI: 10.1111/j.1467-8519.2004.00377.x

Source DB:  PubMed          Journal:  Bioethics        ISSN: 0269-9702            Impact factor:   1.898


  39 in total

Review 1.  The tension between data sharing and the protection of privacy in genomics research.

Authors:  Jane Kaye
Journal:  Annu Rev Genomics Hum Genet       Date:  2012-03-09       Impact factor: 8.929

2.  Can Broad Consent be Informed Consent?

Authors:  Mark Sheehan
Journal:  Public Health Ethics       Date:  2011-08-03       Impact factor: 1.940

3.  Broad consent and biorepositories for molecular epidemiology and genomics research.

Authors:  Steven S Coughlin
Journal:  Int J Mol Epidemiol Genet       Date:  2011-11-25

4.  Sharing the benefits of genetic research.

Authors:  Doris Schroeder; Miltos Ladikas; Udo Schuklenk; Carolina Lasén Lasén Diáz; Anita Kleinsmidt; Fatima Alvarez-Castillo; Dafna Feinholz
Journal:  BMJ       Date:  2005-12-10

5.  Motivating donors to genetic research? Anthropological reasons to rethink the role of informed consent.

Authors:  Klaus Hoeyer; Niels Lynöe
Journal:  Med Health Care Philos       Date:  2006

6.  The complexities of ethical evaluation of genomics research.

Authors:  R Hoedemaekers; B Gordijn; Y Hekster; F van Agt
Journal:  HEC Forum       Date:  2006-03

Review 7.  Research ethics and the challenge of whole-genome sequencing.

Authors:  Amy L McGuire; Timothy Caulfield; Mildred K Cho
Journal:  Nat Rev Genet       Date:  2008-02       Impact factor: 53.242

8.  The informed consent aftermath of the genetic revolution. An Italian example of implementation.

Authors:  Federica Artizzu
Journal:  Med Health Care Philos       Date:  2007-07-19

9.  Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results.

Authors:  Joanna Stjernschantz Forsberg; Mats G Hansson; Stefan Eriksson
Journal:  Eur J Hum Genet       Date:  2009-05-27       Impact factor: 4.246

10.  Health Research with Big Data: Time for Systemic Oversight.

Authors:  Effy Vayena; Alessandro Blasimme
Journal:  J Law Med Ethics       Date:  2018-03-27       Impact factor: 1.718

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