Publications by authors named "Erik Aarden"

6 Publications

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Translating genetics beyond bench and bedside: A comparative perspective on health care infrastructures for 'familial' breast cancer.

Authors:
Erik Aarden

Appl Transl Genom 2016 Dec 29;11:48-54. Epub 2016 Sep 29.

Department of Science and Technology Studies, University of Vienna, Universit├Ątsstra├če 7/II/6, 1010 Vienna, Austria.

Developments in genomics research are considered to have great potential for improving health care - making genomics an urgent site for translational efforts. Yet while much emphasis is put on the technical challenges of translation, there is less scholarly attention for the social infrastructures through which novel medical interventions may be delivered to patient populations. Reflecting the idea that cancer is at the frontier of genomic applications in health care, this paper explores how the assessment of familial breast cancer risks was 'translated' into routine health care in Germany, the Netherlands and the United Kingdom. The paper identifies regulation, institutionalization and standardization as key mechanisms of translation that find distinct expression in particular sociocultural contexts and shape both the social and technical making of genomics into routine clinical practice. Translation is therefore an area of social as well as technical concern, and therefore requires collective decision-making.
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http://dx.doi.org/10.1016/j.atg.2016.09.001DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5167368PMC
December 2016

L'Aquila: governance flaws exposed.

Authors:
Erik Aarden

Nature 2012 Nov;491(7423):192

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http://dx.doi.org/10.1038/491192aDOI Listing
November 2012

The paradox of public health genomics: definition and diagnosis of familial hypercholesterolaemia in three European countries.

Scand J Public Health 2011 Aug 5;39(6):634-9. Epub 2011 Jul 5.

RWTH Aachen University, Futures Studies, Institute of Political Science, Aachen, Germany.

Aims: Considerable progress in public health is expected to occur from the application of genomic knowledge and technologies. This is the subject of a newly emerging field of public health genomics. In this paper we analyze differences in how public health genomics is developing in the Netherlands, the UK and Germany through the definition and diagnosis of familial hypercholesterolaemia (FH), an inherited predisposition for coronary heart disease.

Methods: We analyzed the emergence of public health genomics within the framework of a project on the incorporation of genetics in western European healthcare schemes. Our analysis is based on document analysis and in-depth interviews.

Results: In the Netherlands, public health genomics takes shape through a genetic screening programme for FH, looking for mutations on two specific genes; in the UK it emerges through a strategy of ''mainstreaming'' genetics in health care that aims to identify hereditary predispositions by means of phenotypic diagnosis; and in Germany public health genomics is elaborated at a conceptual level, leaving a diagnosis of FH to individual physicians who occasionally prescribe genetic testing.

Conclusions: Our analysis shows how public health genomics gets constituted differently in different countries and, moreover, produces particular patterns of inclusion and exclusion from care. These patterns indicate a paradox in public health genomics, which consists of an inverse relationship between the use of advanced molecular genetic testing technologies and the number and variety of individuals at risk included in the target population. This paradox presents a challenge for professionals and policy makers in public health genomics.
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http://dx.doi.org/10.1177/1403494811414241DOI Listing
August 2011

Constructing access in predictive medicine. Comparing classification for hereditary breast cancer risks in England, Germany and the Netherlands.

Soc Sci Med 2011 Feb 15;72(4):553-9. Epub 2010 Dec 15.

Maastricht University, Maastricht, Netherlands.

In the first decade of the twenty-first century, predictive forms of medicine, largely associated with genetics, have become increasingly prominent. This has given rise to questions about the social consequences of this development, for example with regard to the distribution of health care access. Drawing on qualitative interviews with clinic staff and public officials and on document analyses, we analyse how access to risk assessment and monitoring for hereditary breast cancer predispositions in Germany, the Netherlands and England is produced through the interaction of risk classification and health care organisation. For each of the three countries, we show how particular combinations of genetic testing and family history data, classification of risks and allocation of monitoring services in practice contribute to specific forms of inclusion and exclusion. Thus, we show how risk assessment and monitoring in Germany attributes a large role to genetic testing; how family history information plays a large role in the Netherlands; and how regional differences in health care have a significant influence in England. On the basis of our case study, we argue that health care organisation is an important facet of the allocation of health care access, as it plays an important role in mediating the influence of risk assessment technologies and risk categories in health care access. We conclude that the allocation of risk assessment and monitoring in predictive medicine deserve more extensive political attention.
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http://dx.doi.org/10.1016/j.socscimed.2010.11.033DOI Listing
February 2011

Providing preimplantation genetic diagnosis in the United Kingdom, The Netherlands and Germany: a comparative in-depth analysis of health-care access.

Hum Reprod 2009 Jul 11;24(7):1542-7. Epub 2009 Mar 11.

Department of Health, Ethics, and Society, Maastricht University, PO Box 616, Maastricht 6200 MD, The Netherlands.

In recent years, preimplantation genetic diagnosis (PGD) has developed into a routine diagnostic procedure in health care. Although during this process, several initiatives have been employed to regulate the procedure, access to PGD may be hampered by the diversity in health-care arrangements or therapeutic cultures in different countries. This article demonstrates how PGD provision practices depend on much more than regulation alone, by providing an in-depth comparative analysis of the provision of PGD in Britain, the Netherlands and Germany. In analysing regulation, organization, selection of indications, and mechanisms and criteria for reimbursement, differences between these countries can be identified. This is important, since differences in PGD provision can have enormous consequences for the access of individual patients in different countries. Somewhat paradoxically, this article concludes that even though differences in access do have serious consequences, they also serve the establishment of PGD. Developing access to PGD in national 'therapeutic cultures' can contribute to making PGD routine health care in a way that may not be achievable by harmonizing regulation.
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http://dx.doi.org/10.1093/humrep/dep054DOI Listing
July 2009
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