From health protection to data protection

Thanks to advances using information technology, we now know far more about our bodies, how they function, and how they are built. But there are challenges, not least in safeguarding personal data.

In 2003, Affymetrix, a genetics company, put all the protein coding regions of the human genome on a computer chip, about 6,500 genes in total. This remarkable step shows how far genetics and informatics have come since the human genome was mapped in 2000. And there is more to come. Advances in informatics enable the storage and analysis of ever larger collections of biomedical information. In the future, cheap, storable “genes on a chip” may become available that will allow rapid analysis of the genetic make-up of each individual. Meanwhile, information on the genetic variations that exist among people and that might allow better, more focused medical interventions are being brought together in large-scale databases.

Human genetic databases are evolving rapidly and are becoming such an important dimension of the information society, not to mention their potential for healthcare. The real treasure trove as far as health researchers are concerned is the possibility of combining genetic data for thousands of individuals with information about their health and lifestyle habits over time. Several projects to link genetic and other personal data are well under way. In Iceland, Decode Genetics, a private company, has created a biobank of genetic samples from 100,000 Icelandic volunteers. Decode is linking these data with information from the Icelandic Health Sector Database and from public genealogical records. Already, it has mapped genes involved in 25 common diseases and identified 15 specific disease-causing genes, including ones behind schizophrenia, stroke and osteoporosis.

In Europe, the UK Biobank hopes to collect genetic samples from 500,000 volunteers aged 45-69 and link the genetic data to medical information updated regularly by their doctors. The aim is to investigate the effects of genetic and environmental factors on the risk of contracting the common diseases of adult life. Other such large-scale projects in the pipeline include the Estonian Genome Project and CARTaGENE in Canada. But, on a smaller scale, there are thousands of collections of human samples, in hospitals and laboratories, which are stored indefinitely and could, in theory, be converted into genomic databases and linked with other sources of information.

Biobanks will help researchers identify the genetic basis of specific inherited disorders, as well as those diseases that do not have clear patterns of inheritance. And they will cast light on environmental links to the risk of developing specific diseases. Perhaps most exciting for the health researchers is that these databases could help explain why individuals vary in their responses to the same drug. Such knowledge could open the way for tailor-made drugs which are more suited to the needs of patients.

Private genes

Some people find the emergence of biobanks quite disturbing, seeing use of such information as an invasion of personal space. Might that information be manipulated in ways reminiscent of Aldous Huxley’s Brave New World or the Hollywood movie, Gattaca?

These fears may be exaggerated, but one cannot belittle their legitimacy, nor the lessons of history. Public vigilance is required. One reason is that genetic data is, to a degree, different from other personal data in that it is relatively immutable over a lifetime and it is perceived as having a predictive value. That is why some fear that in the hands of, say, insurance companies or employers (private or public), genetic information could lead to negative discrimination. Or in the hands of the unscrupulous, the data could be exploited to market products and services. No one can be perfectly certain about how secure this information could be, but if the security and confidentiality of genetic research databases cannot be adequately ensured, public support (and that means funding too) for this promising technology will weaken.

There is another compelling reason to pay more attention to security. Genes are heritable; they hold information not only about the donor but also about other members of a family. So communicating results to an individual – which in the case of research databases is frequently not done – may raise questions about how and whether others need to be involved. For instance, do children have a right to know or a right not to know if a parent is found to have a serious genetic disorder? In many countries it is not fully clear what the obligations of the clinical researcher or database developer are to the families and how these might conflict with the confidentiality promised.

A third issue is that the creation of large-scale human genetic research databases is being done with the intention of creating research resources for the future. The uses of genetic data are not a priori identified. Broadly, the database developer may seek to study the interaction of genes and the environment, but the specific projects will vary. When seeking consent from individuals for the collection, storage and use of their genetic data, many databases ask that consent be granted for future unspecified uses. But in some countries, such broad consent is neither legal nor ethical, the view being that individuals should be contacted for each new use of data. This is a costly and impractical proposition that can undermine research.

There is also a question about the commercialisation of genetic data and what returns to individuals and society are appropriate. Most of the genetic samples, and linked information, have been provided on a voluntary basis for the advancement of science. There is no doubt that the information can be commercially valuable, as private companies are themselves building their own databases. If the databases are created using public funds, with voluntary contributions, what is an appropriate strategy for maintaining broad research access, given the fact that the functioning of the databases entails costs?

In other words, building biobanks is a balancing act between enabling research, protecting information and winning public support. It is possible to imagine a future culture where each human being considers their genetic information as a public good for intergenerational use. But even then, risks of commercial and public abuse will remain. So developing safeguards will always be essential. What kinds of safeguards are being put in place now?

The large-scale databanks are new and we are still learning. Some countries, like Iceland and Estonia, have put in place legislation to regulate their functioning. Most others are relying on existing privacy and human research regulations and legislation. At an international level, a number of draft guidelines for the ethical treatment of genetic data are in the making. The UNESCO International Bioethics Committee adopted the International Declaration on Human Genetic Data in October 2003, and the WHO is reconsidering its Guidelines on Ethical Issues in Medical Genetics and Genetic Services. But to date there is no agreement internationally on the regulation of genetic research databases and even less practical advice on how to manage them.

The OECD’s own biotechnology experts from around the world are holding a meeting in Tokyo in 2004 to help us make progress in the management of genetic databases and the security of genetic information. Whether there is a need for agreement, perhaps in the form of international guidelines on best practices, will be among the discussions. The question on people’s minds is, what will be enough to achieve the necessary balance between the creation of new knowledge and the protection of the very nature of our being? That is a challenge for governments.


OECD (2002), “Licensing Life”, in OECD Observer No 230, January; also available online at


The UK Biobank site:

CARTaGENE Project in Canada:

Estonian Genome Foundation:


A good overview of genomics policy is at Duke University (The Institute for Genome Sciences and Policy):

©OECD Observer No 240/241, December 2003

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