Cover Page The handle http://hdl.handle.net/25174 holds

Cover Page
The handle http://hdl.handle.net/1887/25174 holds various files of this Leiden University
dissertation.
Author: Hellemondt, Rachèl Evelien van
Title: Genomics and the Law
Issue Date: 2014-04-10
GENOMICS AND THE LAW
ISBN: 978-94-90858-24-7
Author: Rachèl van Hellemondt
Lay out and printing: Drukkerij Mostert, Leiden, the Netherlands
Cover: D. Ketting
This thesis is the result of the research project: ‘Large scale applications of genomics
in the field of predictive medicine in the Netherlands: ‘the role of the law’ of the
Centre for Society and the Life Sciences in The Netherlands, funded by the Netherlands
Genomics Initiative and The Centre for Medical Systems Biology
© R.E. van Hellemondt, The Netherlands
All rights reserved. No part of this publication may be reproduced in any form or by any
means without written prior permission of the author.
GENOMICS AND THE LAW
Proefschrift
ter verkrijging van
de graad van Doctor aan de Universiteit Leiden,
op gezag van Rector Magnificus prof. mr. C.J.J.M. Stolker,
volgens besluit van het College voor Promoties
te verdedigen op donderdag 10 april 2014
klokke 15.00 uur
door
Rachèl Evelien van Hellemondt
geboren te Voorburg
in 1971
PROMOTIECOMMISSIE
Promotores:
Prof. dr. A.C. Hendriks
Prof. dr. M.H. Breuning
Overige leden:
Prof. dr. R.C. Tobler
Prof. dr. M.C. Cornel (Vrije Universiteit, Amsterdam)
Dr. E.C.A. Asscher (Erasmus MC, Rotterdam)
Voor Joas en Freeke
CONTENTS
Chapter 1
Introduction
9
PART A PROTECTION VERSUS SELF-DETERMINATION
Chapter 2
Freedom, equals happiness? The regulation of DNA diagnostics in
health care from a human rights perspective
Chapter 3
Prenatal screening in the light of self-determination
Chapter 4
The restriction of freedom of expression for health service
from EU and constitutional perspective
PART B 19
39
53
EUROPEAN LEGAL FRAMEWORK
Chapter 5
Legislation on direct-to-consumer genetic testing in seven
European countries
Chapter 6
Dutch Act on population screening is at odds with EU law
75
93
Chapter 7
Regulating the use of genetic tests: Is the Dutch law an example
for other countries with regard to DTC genetic testing?
105
Chapter 8
Which lessons can we learn for the European Union legal framework
of medicines for the regulation of direct-to-consumer tests?
119
Chapter 9
Concluding remarks
137
Chapter 10
Summary
151
Addendum
References
Abbreviations
Samenvatting
Curriculum Vitae
Publications
158
182
183
188
190