Genetic Databases and Public Attitudes: A Comparison of Iceland, Estonia and the UK

By Korts, Kulliki; Weldon, Sue et al. | Trames, March-June 2004 | Go to article overview

Genetic Databases and Public Attitudes: A Comparison of Iceland, Estonia and the UK


Korts, Kulliki, Weldon, Sue, Guomundsdottir, Margret Lilja, Trames


1. Introduction

This paper reports the initial findings, from three countries, of a comparative study of public attitudes to, and perceptions of population based genetic databases in those countries. Database projects are now being planned and set up in many countries throughout the world. These databases vary to the extent that they combine genetic information with medical information of large populations and, in some cases, genealogical records. The researchers from three countries currently involved in such projects--Iceland, Estonia and the United Kingdom--are partners in an EC funded research project to investigate the Ethical, Legal and Social Aspects of Genetic Databases (ELSAGEN). It is widely recognised that a key challenge posed by the operation of population based databases containing genetic information is to find ways of protecting the interests and concerns of individuals, whilst at the same time creating opportunities for more information to be made available to medical research. In this sense genetic information emerges as a key political issue, in discussions about its ethical, legal and social aspects, because it straddles the boundary between the individual concerns of the donor, or patient, and the wider social concerns of citizens. One of the research aims of the ELSAGEN project is to provide more information and a better understanding of these concerns.

In presenting our findings concerning public attitudes in the three countries, where database projects are prepared or already being implemented, we begin by comparing the very different political, economic and social context in which they are being set up and by considering what factors, in the presentation of these projects to the nation's public, might have affected their reception. We have also taken account of all the information available to us relating to people's general attitude to science and technology in each country. This article then begins to draw links between the particular social contexts of introducing the projects and the actual working principles of the data banks, with respect to the involvement of the public as donors and as beneficiaries. This, to some extent, could be seen as our baseline but in order to address the research aims referred to above we also drew on more detailed studies about public attitudes to genetic information, and we undertook our own empirical investigations based on surveys and focus groups.

The following comparative review discusses the public views on the nature of participation (voluntary or presumed), as well as the anonymity of data gathered (issues associated with privacy and the possibility for feedback). We also bring together comparative research that allows us to draw conclusions about how to interpret those results that refer to general levels of public trust in the ability of scientists and institutions to regulate the operation of the database projects.

2. Comparing the context

The database projects will be described in detail in section 3 but we begin by comparing and contrasting the national contexts in more general terms and by examining existing evidence relating to general attitudes to science and technology in each case.

Iceland is a small country with a very small population (280,000 people) even compared with Estonia (1,370,000), but Icelanders are proud to be seen as a rapidly developing technologically motivated society with exceptionally high levels of literacy and per capita income. Surveys have revealed that a relatively high proportion of the Icelandic people (84%) think that more emphasis on the development of technology would be good (Halman 2001). On the other hand, the UK public (a culturally diverse population in excess of 58,000,000) has a complex and chequered relationship with science, and with the technological development that has marked its progress into the twenty-first century. Repeated surveys and other evidence reveal a well-entrenched feeling of scepticism in the British public towards government regulation and scientific advice.

The rest of this article is only available to active members of Questia

Sign up now for a free, 1-day trial and receive full access to:

  • Questia's entire collection
  • Automatic bibliography creation
  • More helpful research tools like notes, citations, and highlights
  • Ad-free environment

Already a member? Log in now.

Notes for this article

Add a new note
If you are trying to select text to create highlights or citations, remember that you must now click or tap on the first word, and then click or tap on the last word.
One moment ...
Project items

Items saved from this article

This article has been saved
Highlights (0)
Some of your highlights are legacy items.

Highlights saved before July 30, 2012 will not be displayed on their respective source pages.

You can easily re-create the highlights by opening the book page or article, selecting the text, and clicking “Highlight.”

Citations (0)
Some of your citations are legacy items.

Any citation created before July 30, 2012 will labeled as a “Cited page.” New citations will be saved as cited passages, pages or articles.

We also added the ability to view new citations from your projects or the book or article where you created them.

Notes (0)
Bookmarks (0)

You have no saved items from this article

Project items include:
  • Saved book/article
  • Highlights
  • Quotes/citations
  • Notes
  • Bookmarks
Notes
Cite this article

Cited article

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

(Einhorn, 1992, p. 25)

(Einhorn 25)

1

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Cited article

Genetic Databases and Public Attitudes: A Comparison of Iceland, Estonia and the UK
Settings

Settings

Typeface
Text size Smaller Larger
Search within

Search within this article

Look up

Look up a word

  • Dictionary
  • Thesaurus
Please submit a word or phrase above.
Print this page

Print this page

Why can't I print more than one page at a time?

Full screen

matching results for page

Cited passage

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn, 1992, p. 25).

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn 25)

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences."1

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Cited passage

Welcome to the new Questia Reader

The Questia Reader has been updated to provide you with an even better online reading experience.  It is now 100% Responsive, which means you can read our books and articles on any sized device you wish.  All of your favorite tools like notes, highlights, and citations are still here, but the way you select text has been updated to be easier to use, especially on touchscreen devices.  Here's how:

1. Click or tap the first word you want to select.
2. Click or tap the last word you want to select.

OK, got it!

Thanks for trying Questia!

Please continue trying out our research tools, but please note, full functionality is available only to our active members.

Your work will be lost once you leave this Web page.

For full access in an ad-free environment, sign up now for a FREE, 1-day trial.

Already a member? Log in now.