The complexities of ethical evaluation of genomics research.
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Computer Security↗
Biomedical subjects
R Hoedemaekers
Publications and source records attributed to R Hoedemaekers.
Human gene patents: core issues in a multi-layered debate.
After ten years of debate Directive 98/44/EG on the legal protection of biotechnological inventions was adopted in 1998. This directive takes decisions on some controversial bioethical and legal issues and offers the European biotech industries more space to develop their inventions, but leaves a number of philosophical and moral issues unresolved. This paper distinguishes between different layers in the debate and maps its modes of argumentation. Major philosophical, ethical and conceptual issues are located. It is argued that further analysis of these issues can help resolve further ethical and legal difficulties as regards patenting of human DNA. As the allegedly special status of genetic material remains unclear, the status of (human) DNA and its relation to the human body and personal identity should be further explored.
Bioethics↗
Euroscreen 2: towards community policy on insurance, commercialization and public awareness.
The project Euroscreen 2 has examined genetic screening and testing with particular reference to implications for insurance, commercialization through marketing of genetic tests direct to the public, and issues surrounding raising public awareness of these and other developments in genetics, including the practical experiment of a Gene Shop. This paper provides a snapshot of the three year project. The study group's work included monitoring developments in different European countries and exploring possibilities for regulation in insurance and commercialization together with public attitudes to regulation. The success or failure of different strategies is not independent of public awareness. Exploration of policy, however, also requires examination of fundamental concepts such as solidarity and geneticization.
Attitude to Health↗
Commercialization, patents and moral assessment of biotechnology products.
The biotechnology patent debates have revealed deep moral concerns about basic genetics research, R&D and specific biotechnological products, concerns that are seldom taken into consideration in Technology Assessment. In this paper important moral concerns are examined which appear at the various stages of development of a specific genetic product: a predictive genetic test. The purpose is to illustrate the need for a more contextual approach in technology assessment, which integrates the various forms of interaction between bio-technology and society or societal segments. Such an approach will generate greater insight in the moral issues at all stages of a product's life-cycle and this will facilitate decision-making on the 'morality' of a specific biotechnological product.
Biotechnology↗
Is there a unique moral status of human DNA that prevents patenting?
The gene patenting debate, which proved to be a focal point for divergent moral concerns about recent developments in genome research and biotechnology, has revealed that the moral status of DNA is not clear. One of the arguments used to stop undesirable developments was that DNA possesses a unique status, which renders it unfit for patenting. This paper investigates the allegedly unique (moral) status of genetic material and the information it holds from different perspectives. Several properties of DNA prove to be unique. We examine the relevance of these for patentability of genes and conclude that only the unique symbolic meaning of DNA is a relevant factor, which should be taken into account but weighed against other interests involved.
DNA↗
Commercial predictive testing: the desirability of one overseeing body.
In Europe a process of harmonisation of standards and regulations on genetic testing has started. Public discussion and consultation are recommended, but it is not clear in every European country how the decision making process as regards the further introduction of genetic testing services should be formed. In this paper the usefulness and importance of an overseeing body for genetic screening and testing is founded on four lines of reasoning: (1) analysis of the role of value judgments in the use of the concept of (genetic) abnormality; (2) a balancing of potential benefits for all parties involved; (3) a balancing of potential disadvantages, and (4) the greater availability of commercial genetic tests in the future. It is further argued that such an overseeing body has advantages for all the interested parties.
Advisory Committees↗
The concept of abnormality in medical genetics.
This paper explores usage of the concept of abnormality in medical genetics and proposes directives for more careful usage of this concept. The conceptual difficulties are first explored, then a model is developed to assess actual usage, followed by analysis of a sample of genetic textbooks and genetics literature. It appears that fact and valuation are often intermingled, that reference standards used to define 'genetic abnormalities' are often not clear and that the concept of abnormality is often used independent of the degree of certainty with which the altered genetype develops into a (seriously) harmful phenotype. On the basis of these findings it is argued that more restraint and more careful use of the concept of genetic abnormality of medical genetics is appropriate as well as more agreement on the use of reference standards.
Congenital Abnormalities↗
Commercialisation of genetic diagnostic services.
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Commerce↗
Geneticization: the Cyprus paradigm.
Geneticization is a broad term referring to several related processes such as a spreading tendency to use a genetic model of disease explanation, a growing influence of genetics in medical practice, and the slow changing of individual and societal attitudes towards reproduction, prevention and control of disease. These processes can be demonstrated in medical literature on preventive genetic screening and counselling programs for beta-thalassaemia in Cyprus, the United Kingdom and Canada. The preventive possibilities of the new genetic and diagnostic technologies have been quickly understood and advocated by health professionals, and their educational strategies have created a web of social control, in marked contrast to the alleged voluntary decision-making process and free choice. Genetic diagnostic technologies have led to considerable changes in control and management of beta-thalassaemia, and have generated a number of unresolved incongruities.
Abortion, Induced↗
Genetic screening: a comparative analysis of three recent reports.
Three recent reports on genetic screening published in the United Kingdom, Denmark and the Netherlands are discussed. Comparison of the Dutch report with the Danish and the Nuffield reports reveals that the Dutch report focuses on the aim of enlarging the scope for action, emphasising protection of autonomy and self-determination of the screenee more than the other two reports. The three reports have in common that the main concern is with concrete issue such as stigmatisation, discrimination, protection of the private sphere and issues linked with labour and insurance. Some potential long term consequences, however, tend to be neglected or underestimated. These omissions are pointed out.
Advisory Committees↗