Human Genetic Databases: Ethical, Legal and Social Issues: Preface to the Special Issue of Trames

By Sutrop, Margit | Trames, March-June 2004 | Go to article overview

Human Genetic Databases: Ethical, Legal and Social Issues: Preface to the Special Issue of Trames


Sutrop, Margit, Trames


1. The boom of DNA banking

The last few years have witnessed an important expansion of DNA banking all over the world. The collections of DNA samples vary in design and purpose (Cambon-Thomsen et al; 2003 Palmour 2003), occurring in a variety of circumstances from research to diagnostic and therapeutic activities, as well as in forensic services in identifying individuals through DNA. Most of these DNA banks are of small size, mostly set up in order to enable research in the context of disease studies. The very recent tendency to build up extensive population-based databases is related to the success of the Human Genome Project that has energized large-scale genetics and genomics research.

While the mapping of the human genome has been a major scientific achievement, there still exists a large gap between gene discovery and our ability to utilize genetic information to improve health and prevent disease. The interest in human genetic variation and genetic epidemiology provide the basis for the construction of genetic databases. One hopes that the large-scale genetic databases enable us to understand the combined effects of genetic, lifestyle and environmental risk factors in the development of a disease.

Also emerging areas of research, such as pharmacogenetics, also require access to large pools of genetic data. Pharmacogenetics, as the study of genetic variation that affects response to medical drugs, has the potential to improve the safety and efficacy of treatments, mostly by supporting the development of genetic tests that would allow to judge how likely a specific medicine is to help or harm a particular patient. People vary in their response to the same medicine due to the differences in their genetic make-up. The hope is that pharmacogenetics will enable to find the right medicine to the right patient in the right dosis.

2. What is a population-based genetic database?

The population-based genetic databases rely on a large number of research subjects contributing their DNA samples in the form of blood or tissue that will be linked with medical, genealogical and lifestyle information.

Iceland has been a pioneer in proposing a database complex consisting of Health Sector Database, genealogical database ("Book of Icelanders") and Genetic Database. This was followed by the Estonian Genome Project (Estonia), UK BioBank (United Kingdom), CARTaGENE (Quebec, Canada), UmanGenomics (Vasterbotten, Sweden), Genome Database of the Latvian Population (Latvia), Genome Institute of Singapore (Singapore), Autogen Limited (Kingdom of Tonga). Also in USA and China projects are currently under way. The best overview of the planned genetic database projects can be found in Austin, Harding, McElroy 2003 and Cardinal, Deschenes 2003. It seems that all currently proposed population--based genetic database projects have the same goal--they intend to identify susceptibility genes for common diseases and attempt to improve the medical care and health of the populations involved. In some cases, like Iceland, Estonia and Latvia, the initiators of the projects also hope to boost the country's economy through expanding the biotechnology sector and creating new jobs. Although the database projects share the main objectives, they vary in size, subject participation, organization, as well as in the balance of government and commercial involvement. The planned projects have different consent procedures and only some (Estonia, Latvia) intend to give feedback to the participants.

Researchers, physicians, patients, biotechnology firms and pharmaceutical companies are excited about the scientific and therapeutic potential presented by genetic databases. They are all interested in the discovery of the genetic causes of diseases and in the development of better treatments and cures. But their interests and motives for participating in genetic research are, however, different or even competing. …

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 ...
Default project is now your active project.
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

Human Genetic Databases: Ethical, Legal and Social Issues: Preface to the Special Issue of Trames
Settings

Settings

Typeface
Text size Smaller Larger Reset View mode
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.