Skip to main content Accessibility help
×
Hostname: page-component-78c5997874-v9fdk Total loading time: 0 Render date: 2024-11-03T01:47:53.973Z Has data issue: false hasContentIssue false

12 - Consent and population genetic databases: a comparative analysis of the law in Iceland, Sweden, Estonia and the UK

from Part III - Legal issues

Published online by Cambridge University Press:  05 August 2012

Matti Häyry
Affiliation:
University of Manchester
Vilhjálmur Árnason
Affiliation:
University of Iceland, Reykjavik
Gardar Árnason
Affiliation:
University of Central Lancashire, Preston
Hördur Helgi Helgason
Affiliation:
Lecturer, University of Iceland
Get access

Summary

Introduction

Ever since the birth of the idea of human rights, it has been generally accepted that human beings should generally be free to make their own decisions, at least in their personal matters. Mill famously proclaimed that ‘the individual is not accountable to society for his actions, insofar as these concern the interests of no person but himself’. Similarly, it has become generally recognized that there exists a private sphere in the life of every person, and that the privacy of this sphere should be observed by others. The details of these concepts, of self-determination and privacy, are in many respects vague, for a variety of reasons. Their substance varies from state to state, for example as to what extent an individual can make decisions that are harmful to him or her. The boundaries of these concepts are also in constant, albeit limited, flux, for example as to what personal matters are to be considered ‘private’. In addition, a consensus on these issues has hardly been reached anywhere, even within a single state, and they therefore remain a source of continuing debate.

Although the particulars of these rights have not achieved universal recognition, and will perhaps never do so, the fact that the fundamental concepts of self-determination and privacy are generally acknowledged has wide-reaching consequences. An example of an activity affected by this is the processing of personal data.

Type
Chapter
Information
The Ethics and Governance of Human Genetic Databases
European Perspectives
, pp. 97 - 107
Publisher: Cambridge University Press
Print publication year: 2007

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Save book to Kindle

To save this book to your Kindle, first ensure [email protected] is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×