Healthcare refused due to wrong genes?
4 February 2010
Not the quantity but the type of solidarity is important
Besides die hard smokers and the seriously overweight, do people with an unfavourable set of genes also need to be concerned about their access to healthcare? Not for the time being, concludes Dutch researcher Erik Aarden. Yet with an ever-increasing number of advanced disease-predicting techniques becoming available, the level of Dutch solidarity needs to be determined now: who may participate in our healthcare system?
Can you exclude people with a high risk of developing breast cancer or cardiovascular diseases from the healthcare system? Or can you instead refuse people outside certain risk groups access to specific facilities? And who takes such decisions? Technological developments which make it easier to screen for genetic abnormalities are increasing the urgency of such questions. Cultural scientist Erik Aarden compared how Germany, the United Kingdom and the Netherlands are trying to solve this puzzle.
Aarden investigated whether healthcare systems include new technologies in the basic health insurance package and whether people gain access to new technologies. He limited his research to three striking genetic technologies: preimplantation genetic diagnosis in which in-vitro fertilisation is combined with genetic research; monitoring for heritable breast cancer; diagnosis and treatment of familial hypercholesterolaemia, a condition that significantly increases the risk of cardiovascular diseases. Erik Aarden concluded that the three countries differed considerably in their approach.
Room for adjustment
In the United Kingdom, the embryo legislation means that only a few clinics may use preimplantation genetic diagnosis. Yet whether or not this is remunerated depends on the location of this clinic. In some parts of the country the costs are reimbursed and in other parts not. In Germany, preimplantation genetic diagnosis is prohibited but the legislation for this only applies to embryos aged 24 hours or older. That provides loopholes for circumnavigating the law and allowing various types of reimbursement. In the Netherlands there is one clinic that is allowed to use preimplantation genetic diagnosis. A workgroup decides who may undergo the treatment. The rule for reimbursement is that the procedure must count as normal care, also from an international perspective.
Such large differences between the three countries were also seen with respect to breast cancer monitoring and the diagnosis and treatment of familial hypercholesterolemia.
Aarden’s unique comparison reveals just how large the diversity in solutions and approaches is. Germany has a conservative approach, partly due to the importance it attaches to cost effectiveness. The United Kingdom focuses on serving as large a proportion of the population as possible and tries to assimilate new technologies into the existing national health system. Finally, the Netherlands provides small-scale niches in which genetic technologies can develop and demonstrate their worth. Yet only certain risk groups have access to these niches.
Integrating gene technology into the existing healthcare system is not a one-way effort. Several parties play a role and the continuously changing technologies require flexibility on the part of policy makers. Aarden therefore calls for a ‘technology of modesty’: policy makers must realise that their knowledge is limited and they need to pay greater attention to the experiences of healthcare users. Healthcare will not become easier to distribute and neither will it become cheaper. Consequently solidarity will not be expressed in terms of quantity – how many people have the right to care – but in terms of type – who receives which care. And that is what future discussions need to focus on.
Erik Aarden carried out his research within the NWO programme The Societal Component of Genomics Research. This programme aims to stimulate ethical, legal and socio-scientific research into the societal component of genomics research. This covers more applied research into concrete problems as well as more fundamental research, and both empirical and normative studies and analyses.
About NWO
The Netherlands Organisation for Scientific Research (NWO) is the principal Dutch science funding body and its mission is to facilitate excellent scientific research in the Netherlands by means of national competition. Each year NWO spends more than 700 million euro on grants for top researchers, on innovative instruments and equipment, and on institutes where top research is performed. NWO funds the research of more than 5300 talented researchers at universities and institutes. Independent experts select proposals by means of a peer review system. NWO facilitates the transfer of knowledge to society.
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For further information please contact:
- Dr Erik Aarden (Maastricht University)
- +31 6 18 04 15 37
- e.aarden@hes.unimaas.nl
- The doctoral thesis was defended on 5 February 2010
- Supervisors: Prof. Klasien Horstman, Prof. Rein Vos
