Private lives

Directorate for Science, Technology and Industry
Page 21 

The right to privacy and medical confidentiality is taken as read in OECD countries. Yet with new genetic technologies, information about a patient can give clues to the health and physical attributes of the patient¡¦s whole family, and even future children. There are calls to improve data performance in healthcare, but are existing data protection systems strong enough to cover these new realities?

The use of information technology in the healthcare sector has spurred rapid growth in health-related databases. Genomics, bioinformatics and technologies for genetic testing are adding to this growth. In most OECD countries, health data and genetic data are currently treated in the same way as other personal or sensitive data in terms of protection. But how can we effectively protect privacy in these new types of data and in the electronic ways of processing and storing it at the global level? Right now, international debate suggests, we could do better.

Genetic data is generally covered by confidentiality and personal data protection laws, combined in most countries with recourse to over-arching constitutional protection, or human rights legislation. But even this arsenal may not be enough to cover the very specific and detailed information contained in genetic and genomic data. A person¡¦s ¡§genetic fingerprint¡¨ may reveal important information not only about the individual being tested, but also about family members such as a hereditary predisposition to develop breast cancer or Huntington¡¦s disease, which may ultimately have a great impact upon his or her life, including reproductive choices and even life insurance. So privacy and data protection in this area are an important policy issue.

In considering personal data arising from genetic testing there are several elements that could be clarified, notably the definition of personal data in relation to genomics and the distinction between genetic/genomic data and other health data. Other examples would be to clarify the settings, purpose and modalities of collection of genetic/genomic personal data (medical context, specific research, criminal, etc.), as well as the circumstances under which such data could be transferred, shared and passed on for secondary purposes. If a person has consented to donate DNA for a study on obesity, can the same DNA be used subsequently for research on asthma? And then can the information be used for commercial purposes?

Clearly, we have to ensure that data about a person¡¦s genetic make-up remains private. The question is, how? Is ¡§knowing and voluntary¡¨ consent the general condition to have such data collected, stored and used? There is an issue of whether the same consent requirements apply to public health use of the data, public security use of the data or commercial use of the data. And the circumstances, if any, under which one family member has the right to access the genetic information of another family member have to be cleared up too. There is also the whole question of what rights the individual, or even a community, has over data arising from genetic testing once it has been gathered and stored for a particular purpose.

Many research centres and private laboratories are setting up DNA banks of entire populations. There seems to be no agreement as to how long this DNA can be stored and little uniformity as to what type of information should be given to those who donate their DNA. Another critical issue is privacy protection when linking databases and biological samples.

International bodies and professional organisations overwhelmingly agree that protecting the identity of an individual in data collection and storage is a key concern. People may avoid tests or treatment if they fear the results will not be totally confidential. All current guidelines cite the need for ¡§appropriate technical measures¡¨ to protect data, yet little progress has been made in clarifying what the term ¡§appropriate¡¨ should signify and how this goal can be achieved in practice. And there has been little discussion of the possible consequences of making key health data irreversibly anonymous and whether this is truly desirable.

There may be cases where it would be important to identify individuals, for example, if a gene mutation reveals that some individuals might be at risk of life-threatening side effects from a particular drug. We also need clear definitions of what constitutes anonymous data, where the subjects are, in theory at least, permanently unidentifiable; coded data where only those with the key to the code can access information to identify a particular person; and de-identified data where the identity is easier to re-establish.

A 1997 report to the US secretary of health and human services on privacy and health research provides a compelling review of security issues. As this document highlights: ¡§security has many dimensions; the special challenge (in the health sector) is to keep data sequestered and protect its integrity, but at the same time to keep it accessible for authorised users who have legitimate need to use it¡¨.

Over the past decade the OECD has built expertise in privacy and confidentiality issues using a science and rules-based approach. Benchmark principles on data protection were developed by the OECD in 1980 and have been integrated into laws and regulations in many countries.

The OECD also developed in 1992 and 1997 guidelines on security of information systems and cryptography policy, which identifies the basic principles that governments should take into consideration when developing policies on security or cryptography.

But we need to know how the OECD¡¦s ¡§Guidelines governing the Protection of Privacy and Transborder Flows of Personal Data¡¨, ¡§Guidelines for the Security of Information Systems¡¨ and ¡§Guidelines on Cryptography Policy¡¨ could apply in the context of genetic testing.

This would involve exchanging information to identify practices currently available for protecting privacy and ensuring adequate security, and issuing practical guidance (on the basis of this exchange of information) on how to implement the OECD guidelines on privacy, security and cryptography in the context of data arising from genetic testing. All of this has an economic impact, as it may affect the use of informatics for analysing genomic data, the globalisation and commercialisation of research in genomics and subsequent improvements in health.

But there are also social questions. There is growing public concern that in the absence of appropriate safeguards, data arising from genetic testing and related databases may negatively affect human rights and democratic freedom. Lack of public acceptance could impede progress in research and development, and potential improvements in the health of populations around the world.

Developments in genetic research offer the possibility of better prevention and treatment for a host of health problems, but policymakers need to address public concerns about the privacy problem to ensure that the benefits of the new technologies are realised.

References

 Genetic Testing: Policy Issues for the New Millennium, OECD, 2000.

 Biological Resource Centres: Underpinning the Future of Life Sciences and Biotechnology, OECD, forthcoming.

©OECD Observer No 229, November 2001 




Economic data

E-Newsletter

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 print editions delivered to you directly


Online edition
Previous editions

Don't miss

  • “Nizip” refugee camp visit
    July 2016: OECD Secretary-General Angel Gurría visits the “Nizip” refugee camp, situated between Gaziantep and the Turkish-Syrian border, accompanied by Turkey’s Deputy Prime Minister Mehmet Şimşek. The camp accommodates a small number of the 2.75 million Syrians currently registered in Turkey, mostly outside the camps. In his tour of the camp, Mr Gurría visits a school, speaks with refugees and gives a short interview.
  • OECD Observer i-Sheet Series: OECD Observer i-Sheets are smart contents pages on major issues and events. Use them to find current or recent articles, video, books and working papers. To browse on paper and read on line, or simply download.
  • Queen Maxima of the Netherlands gives a speech next to Mexico's President Enrique Pena Nieto (not pictured) during the International Forum of Financial Inclusion at the National Palace in Mexico City, Mexico June 21, 2016.
  • How sustainable is the ocean as a source of economic development? The Ocean Economy in 2030 examines the risks and uncertainties surrounding the future development of ocean industries, the innovations required in science and technology to support their progress, their potential contribution to green growth and some of the implications for ocean management.
  • OECD Environment Director Simon Upton presented a talk at Imperial College London on 21 April 2016. With the world awash in surplus oil and prices languishing around US$40 per barrel, how can governments step up efforts to transform the world’s energy systems in line with the Paris Agreement?
  • Happy 10th birthday to Twitter. This 2008 OECD Observer interview with Henry Copeland said you’d do well.
  • 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.
  • Once migrants reach Europe, countries face integration challenge: OECD's Thomas Liebig speaks to NPR's Audie Cornish.

  • Message from the International Space Station to COP21

  • COP21 Will Get Agreement With Teeth: OECD Secretary-General Angel Gurría on Bloomberg

  • The carbon clock is ticking: OECD’s Gurría on CNBC

  • If we want to reach zero net emissions by the end of the century, we must align our policies for a low-carbon economy, put a price on carbon everywhere, spend less subsidising fossil fuels and invest more in clean energy. OECD at #COP21 – OECD statement for #COP21
  • They are green and local --It’s a new generation of entrepreneurs in Kenya with big dreams of sustainable energy and the drive to see their innovative technologies throughout Africa. blogs.worldbank.org
  • Pole to Paris Project
  • In order to face global warming, Asia needs at least $40 billion per year, derived from both the public and private sector. Read how to bridge the climate financing gap on the Asian Bank of Development's website.
  • How can cities fight climate change?
    Discover projects in Denmark, Canada, Australia, Japan and Mexico.
  • Climate: What's changed, what hasn't, what we can do about it.
    Lecture by OECD Secretary-General Angel Gurría, hosted by the London School of Economics and Aviva Investors in association with ClimateWise, London, UK, 3 July 2015.

  • Climate change: “We should not disagree when scientists tell us we have a window of opportunity–10-15 years–to turn this thing around” argues Senator Bernie Sanders.

  • In the long-run, the EU benefits from migration, says OECD Head of International Migration Division Jean-Christophe Dumont.
  • Is technological progress slowing down? Is it speeding up? At the OECD, we believe the research from our Future of ‪Productivity‬ project helps to resolve this paradox.
  • Is inequality bad for growth? That redistribution boosts economies is not established by the evidence says FT economics editor Chris Giles. Read more on www.ft.com.
  • Catherine Mann, OECD Chief Economist, explains on Bloomberg why "too much bank lending can slow economic growth".
  • 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 .

Most Popular Articles

Poll

What issue are you most concerned about in 2016?

Unemployment
Euro crisis
International conflict
Global warming
Other

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 2016