Personalia
Simone van der Burg, born in Utrecht, the Netherlands, 1971. Ph.D. from VU University Amsterdam, the Netherlands. Assistant Professor of Philosophy of Health Care at Radboud University Medical Center.
L’Oréal-UNESCO For-Women-in-Science Fellow (1 September 2015 – 31 January 2016)
Towards a New Moral Framework for Newborn Screening
Research Question
What resources do relational perspectives to ethics offer to understand the ethical significance of Next Generation Sequencing technologies for newborn screening? And what perspective does this offer to how newborn screening programs can expand in the future?
Project Description
Newborn screening (NBS) involves taking the blood of a newborn infant in the first week of life and testing it for a list of disorders, in order to be able to start treatment early and improve the prognosis. While nowadays NBS is conducted with biochemical technologies, within ten years it is expected that technologies that are able to sequence the entire genome will be used for NBS.
This raises ethical questions. Present criteria for newborn screening are often criticized for not offering sufficient moral guidance. This project contributes to developing an alternative moral framework, which builds on a relational approach to ethics: appreciating that genes are shared, it aims to understand whether and how NBS can threaten but also foster connectedness between children and parents.
Selected Publications
1) Krabbenborg, L., Schieving, J., Kleefstra, T., Vissers, L. E., Willemsen, M. A., Veltman, J. A., & van der Burg, S. (2015). Evaluating a counselling strategy for diagnostic WES in paediatric neurology: an exploration of parents’ information and communication needs. Clinical genetics.
2) Burg, Simone van der and Tsjalling Swierstra (eds.) (2013). Ethics on the laboratory floor, Palgrave/MacMillan
3) Burg, Simone van der and Marcel Verweij (2012). Maintaining trust in newborn screening; compliance and informed consent in the Netherlands, Hastings Center Report, September-October, 1-7
More
Read Simone van der Burg’s report on her fellowship: “Time to reflect, alone and with fellow NIAS-Fellows”
Laten we de liefde dwarsbomen door DNA? (op-ed article by Van der Burg in NRC)