Tight genes

Creation and Governance of Human Genetic Research Databases
The Icelandic Health Sector Database was started in 1998 to develop improved methods of achieving better health, and prediction, diagnosis and treatment of disease. Worthwhile goals, yet it was stalled by controversy over the issue of consent. The CARTaGENE project, a proposed 50-year genetic profile of the Quebec population, got started in 1999, and is still awaiting ethics and privacy approval from the government.
The ever-expanding content of genetic and biological data, the increasing facility to share them, and the importance of genetics in understanding human health have created a brave new world of issues and concerns. Who owns the data, information and biological samples contained in a genetic database project? What criteria should be used to determine whether a bio-bank should be a public or private undertaking? Should participants be remunerated? What constitutes informed consent? Should children be included in genetic studies, and if so, what safeguards should be considered?This report, Creation and Governance of Human Genetic Research, kick-starts the process of considering international policy challenges associated with the establishment, management and governance of human genetic research databases.One of the most consistent themes that emerges is the importance of gaining and respecting the public’s trust. Losing this, as seen with the controversy over genetically modified organisms, can have a profound impact on research and the acceptance of new technologies. Furthermore, commercial use raises tensions between free access to data and the desire for commercial benefits.Certainly not all efforts at developing genetic banks are being held back. The GenomEUtwin project, supported by the European Commission, is focusing on twin and other population cohorts to pull out the genetic, environmental and lifestyle components indicated in health problems such as obesity, migraine, stature, heart disease, stroke and longevity. It has collected data from all across Europe, including Danish, Dutch, Finnish and Italian twins, among many other sources. Tens of thousands of DNA samples have been collected and stored since 2002, and the information is accessible to investigators worldwide.Large-scale studies of populations like this may contribute to science’s understanding of the complex diseases and improvements in prevention and cure, but as Creation and Governance of Human Genetic Research Databases shows, the policy implications have to be dealt with seriously. ISBN 9264028528©OECD Observer No 258/259, December 2006

Economic data

GDP growth: +0.6% Q3 2017 year-on-year
Consumer price inflation: 2.3% Dec 2017 annual
Trade: +4.3% exp, +4.3% imp, Q3 2017
Unemployment: 5.5% Dec 2017
Last update: 12 Feb 2018


Stay up-to-date with the latest news from the OECD by signing up for our e-newsletter :

Twitter feed

Suscribe now

<b>Subscribe now!</b>

To receive your exclusive paper editions delivered to you directly

Online edition
Previous editions

Don't miss

  • Ambassador Aleksander Surdej, Permanent Representative of Poland to the OECD, was a guest on France 24’s English-language show “The Debate”, where he discussed French President Emmanuel Macron’s speech at the World Economic Forum in Davos.
  • The fight against tax evasion is gaining further momentum as Barbados, Côte d’Ivoire, Jamaica, Malaysia, Panama and Tunisia signed the BEPS Multilateral Convention on 24 January, bringing the total number of signatories to 78. The Convention strengthens existing tax treaties and reduces opportunities for tax avoidance by multinational enterprises.
  • Rousseau
  • Do you trust your government? The OECD’s How's life 2017 report finds that only 38% of people in OECD countries trust their government. How can we improve our old "Social contract?" Read more.
  • Papers show “past coming back to haunt us”: OECD Secretary-General Angel Gurria tells Sky News that the so-called "Paradise Papers" show a past coming back to haunt us, but one which is now being dismantled. Please watch the video.
  • When someone asks me to describe an ideal girl, in my head, she is a person who is physically and mentally independent, brave to speak her mind, treated with respect just like she treats others, and inspiring to herself and others. But I know that the reality is still so much different. By Alda, 18, on International Day of the Girl. Read more.
  • Globalisation’s many benefits have been unequally shared, and public policy has struggled to keep up with a rapidly-shifting world. The OECD is working alongside governments and international organisations to help improve and harness the gains while tackling the root causes of inequality, and ensuring a level playing field globally. Please watch.
  • Read some of the insightful remarks made at OECD Forum 2017, held on 6-7 June. OECD Forum kick-started events with a focus on inclusive growth, digitalisation, and trust, under the overall theme of Bridging Divides.
  • Checking out the job situation with the OECD scoreboard of labour market performances: do you want to know how your country compares with neighbours and competitors on income levels or employment?
  • Trade is an important point of focus in today’s international economy. This video presents facts and statistics from OECD’s most recent publications on this topic.
  • The OECD Gender Initiative examines existing barriers to gender equality in education, employment, and entrepreneurship. The gender portal monitors the progress made by governments to promote gender equality in both OECD and non-OECD countries and provides good practices based on analytical tools and reliable data.
  • Interested in a career in Paris at the OECD? The OECD is a major international organisation, with a mission to build better policies for better lives. With our hub based in one of the world's global cities and offices across continents, find out more at www.oecd.org/careers .
  • Visit the OECD Gender Data Portal. Selected indicators shedding light on gender inequalities in education, employment and entrepreneurship.

Most Popular Articles

OECD Insights Blog

NOTE: All signed articles in the OECD Observer express the opinions of the authors
and do not necessarily represent the official views of OECD member countries.

All rights reserved. OECD 2018