Legal limitations on genetic research and the commercialisation of its results

    Research output: Chapter in Book/Report/Conference proceedingChapterScientific


    Developments in genetics hold a strong promise for future possibilities in the cure of diseases and the prevention of health hazards. Research by Groningen University has e.g. brought to light that presently unknown mutations of alleles on the fifth chromosome make children susceptible to the adverse effects of passive smoking. Further research is done to identify the specific alleles and to find out how to influence the processes set in motion by the mutation. This kind of research and its results give rise to many legal and ethical questions. The example described above seems rather innocent in this respect but even here moral issues can rise. Should parents that smoke have their children tested on the presence of the mutation? Should they only test the children if there are more concrete indications for doing so? Should they stop smoking if their child carries the defect? Are these only ethical questions or can they also become legal questions and if so, under what conditions? These are difficult questions that are not always easy to answer, drawing from existing laws and regulation. This report deals with the legal limitations to genetic research. The emphasis in this report is mainly on human genetics. Within this subject, three themes will be addressed. The first theme addressed is transparency. More than with any other technology, in biotechnology it is difficult to imagine what the positive or negative effects of research will be. Also the choices in what to research are very great. In such circumstances, transparency with respect to (intended) research requires explicit attention. Transparency can take away unnecessary fears and renders decisionmaking more democratic. Transparency does however not come by automatically. It may be burdensome and might place research in a less favourable light than would have been the case if other choices with respect to transparency had been made. In short, there is ample reason to address transparency in this report. As a second theme, this report will address the limits to freedom of research. Freedom of research finds its limits in other values and interests at stake in genetics. We will see that the Dutch government has devised a framework for describing the relevant values, interests and norms in genetics. This framework will prove useable in dealing with the limits to freedom of research. Finally, in order to influence (research) behaviour regulation is necessary. The existing regulatory instruments are however not always as effective as may be desired. Genetic research does not neatly fit in regulatory pigeon holes. Genetic research does also not stop at the state frontier. Regulation of genetic research at the national level has therefore definite shortcomings. At the international level, a national government is only one of many players. It is difficult to influence international regulation in such a way that it sufficiently reflects an individual country¿s moral preferences. In short, the rela
    Original languageEnglish
    Title of host publicationNetherlands Reports to the Seventeenth International Congress of Comparative Law
    EditorsJ.H.M. van van Erp, L.P.W. van van Vliet
    Place of PublicationAntwerpen/Oxford
    Number of pages16
    ISBN (Print)109050955797
    Publication statusPublished - 2006


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