Sitra’s research about genetic information completed

Press release 31 August 2004 The aim of the Finnish National Fund for Research and Development’s (Sitra) The Social Choices Facing the Biosociety project is to offer information on which to base public debate. The project has resulted in the publication of Geenitieto kuuluu kaikille (Gene Information for All), which describes how gene information can be used for future decision-making and which studies the social choices associated with biotechnology. Osmo Kuusi has written a debate publication, which is to continue the discussion that started with the report published in 2003 and commissioned by the Finnish Parliament’s Committee for the Future Ihmisen perimän ja kantasolujen tutkimuksen haasteet päätoksenteolle (The challenges facing decision-makers concerning our genome and stem cells). The book is published by Edita. Osmo Kuusi, Futures’ researcher: Genetic information for all Reason for the book On the initiative of the Committee for the Future of the Parliament of Finland an assessment was made of the challenges facing decision-makers concerning our genome and stem cells. A key question in the evaluation of technology was whether it was necessary and in what form to set up a Finnish Genome Information Centre that would collect information about Finnish genes. To promote public debate the Committee proposed that a book be written directed to the general public. Genetic Information for All is the answer to this. It was agreed between the author and Sitra when the book was about to be written that it might be of a provocative nature. The book opens up an entirely new perspective as to how gene information might be exploited in the light of international experiences and the debate that has already taken place. Rapidly increasing and changing gene information The sequencing process of human genome was finally completed in April 2003. The first full description of man’s DNA was made from some 3.2 billion nucleotide pairs This was possible because in ten years the ability to read a person’s DNA and the costs of doing so had fallen to only a hundredth of what they had been. Genetic information and the skills to interprete it are increasing all the time. Last spring (and still in the book) it was generally assumed that the number of a person’s genes was approximately 30,000. Today the generally accepted estimate is about 22,000 genes. It has become increasingly obvious that the individual’s experiences and his genetic make-up are closely interlinked. The complex interaction between genes and the environment make it an extremely difficult and complicated task to interprete genetic data. A simple explanation for inherited diseases and the idea that they are caused by a single genetic defect is exceptional. On the other hand, identifying the essential in a person’s genes it is probably not necessary to read more than a fraction of billions of nucleotide pairs. Taking into account the increasing efficiency in reading DNA and the growing understanding of what needs to be read, by the year 2015 it seems likely that it will be possible to read essential in a person’s genome at a cost of no more than a thousand euros. What kind of Biobank or Genome Information Centre? Estonia, Iceland, Britain and Sweden have already set up national biobanks, and the principles on which they operate are described in the book. When blood samples and genetic information have been collected for national tissue and databanks the aim has been, above all, to discover the causes of genetic diseases and to develop new medicines. Even though Finland does not yet have a single biobank with genetic information, the National Public Health Institute and universities have assembled a lot of information about the origins of Finnish genetic diseases. The principal national diseases and many types of cancer, heart and coronary disease, diabetes, schizophrenia as well as Alzheimer’s and Parkinson’s disease, however, are thought to be caused by the joint action of tens or hundreds of genes. To study the joint effect of many genes requires a large amount of demographic data. In the biobanks already existing in other countries the key aim has been to produce a mass of data that can be used for statistical analysis. By 2015, and probably even much earlier, it will be technically possible to produce and store in the Finnish Genome Information Centre not only genetic data related to disease and illness but also other data. Genes that cause lactose intolerance, the urge to seek excitement and neuroticism have already been identified. The extremely complex information about what is a suitable diet for a person or his or her natural character­istics differs from disease-related data in that the consequences of misinterpreting the data are not particularly serious. In particular, if information about the personal charac­ter­istics of a nine-year-old child, knowledge about his genes cannot, even by changing expectations, affect the relationship between the child and his parents or the child and his teacher. Will genetic data become an everyday thing? The book puts forward three future stories for the use of genetic data in Finland and the form that the Genome Information Centres should take. The scenarios are as follows: Scenario 1: Safety first Scenario 2: Economy first Scenario 3: Genetic information for all The first scenario stresses safety and action based on only reliable data. The second takes into account the economic benefits of gene technology. The aim of the third is to awaken in people an active interest in their genome. All three scenarios are regarded as correct from the perspective of the year 2015. This is possible insofar as different risks and possibilities are realised. The sympathies of the book lie clearly with the third scenario. Even in the face of a threat of the kind of catastrophe envisaged in the first scenario, the author is nevertheless of the opinion that the third scenario is justified in order to make genetic information an everyday thing and explode the genetic myth. The recommendations made at the end of the book are based on this view. What would the nature of the Genome Information Centre according to the three scenarios be? In the first scenario · Genetic information would not, for security reasons, be concentrated to a single database. There would simply be a separate register of databases and tissue banks. · Only information about twins, wide-scope informed consent, could be used. For others only narrow disease-based informed consent is used. This would permit its use for important research projects into the health of the nation. · A person’s own genome could be seen only together with a doctor unless the test is carried out outside the European Union. In the second scenario · There would be a Genome Information Centre from which the material could be used actively for research into common diseases and cancer especially by international molecular medicine research institutes. · The Genome Information Centre would also collect information about suitable diets and personal characteristics. A person can use his own genome and anonymous comparative data at a high price. According to the third scenario · The Genome Information Centre would be a public body similar to the present Statistics Finland. It would actively further not only research but also people’s own use of genetic data. · The Centre would collect information about suitable diets and personal characteristics. Use for personal and anonymous comparisons would be free or subject only to a nominal charge. Further details about the project can be obtained from Vesa-Matti Lahti, +358-9-6189 9446 Further details about the book are available from Osmo Kuusi, +358-50 372 0829 Publication details: Geenitieto kuuluu kaikille, Osmo Kuusi, Sitra 267, ISBN 951-37-4177-X, ISSN 07858388, Edita Publishing Oy. Helsinki 2004, price 28 euros. Sales: Edita Customer Service and bookstores.