Individualized choice: a new approach to reproductive autonomy in prenatal screening

Preliminary program
Symposium “Individualized choice: a new approach to reproductive autonomy in
prenatal screening?” Brocher Foundation – 4 and 5 April 2013

Day One1
09.00 Welcome & Introduction by Prof dr G de Wert, Professor Biomedical Ethics, Maastricht University, Maastricht, The Netherlands
09.10 Session I: Prenatal screening practice now and in the future
1. Prof dr L Chitty, GOSHCC Professor of Genetic and Fetal Medicine
UCL Institute of Child Health, Great Ormond Street and UCLH NHS Foundation Trusts, London
Prof Chitty will give a general overview of the current state of the art of prenatal screening for foetal abnormalities, including developments of NIPT, genome-wide diagnostic testing by e.g. array-CGH, and foetal ultrasound testing. Expectations regarding future scenarios will be presented.
2. Dr I Maya, Rabin Medical Center, Petah Tikva Israel
Dr May will give an overview of the various ways in which array- or NGS-based diagnostic techniques are applied in pregnancy, both in her own country and worldwide. She will also address why professionals offer this type of testing to pregnant women, and the challenges and problems encountered in daily practice, such as the practical feasibility of informed consent and decision-making in this context.
10.30 COFFEE BREAK
10.50 Session II: Psychological and social implications of prenatal screening
3. Prof dr M Cornel, Professor in Community Genetics, VU Medical Centre,
Amsterdam, the Netherlands
Prof Cornel will give a general overview of current prenatal screening strategies and the reasons behind them. She will reflect on this from a community genetics point of view, and will also address the implications of the so-called ‘parallel universe’ of commercial DTC-prenatal test offers. What roles and responsibilities do states, professionals and individuals have in this context?
4. Prof dr J Hewison, Professor of the Psychology of Health Care, University of
Leeds, UK
Prof Hewison will give an overview of research into the psychological aspects of the dynamics of prenatal screening strategies. She will address the issues of what it means for women to be confronted with heterogeneous test offers, the feasibility of adequate informed consent and autonomous decision-making. Finally, she will reflect on the concept of ‘individualized choice‘.
12.10 LUNCH BREAK
1 Presentations # 1-6 will last 40 minutes, including some time for questions by the audience; presentation # 7 will be 30 minutes.
13.15 Session III: Ethical aspects of prenatal screening and individualized choice
5. Prof dr C Munthe, Professor of Practical Philosophy, University of Gothenburg,
Gothenburg, Sweden
Prof Munthe will reflect on current developments in prenatal screening against the
background of the possible tension between the paradigms if serving the interests of society and serving the interests of pregnant women. In this connection, he will also address them concept of ‘individualized choice’.
6. Prof dr S Wilkinson, Professor of Bioethics, Lancaster University, UK
Prof Wilkinson will discuss the ethical principle of respect for reproductive autonomy. This not only refers to informed consent as an ethical condition for responsible testing, but also to an ideal of the good life that such testing may contribute to. He will also address the concept of ‘individualized choice’.
14.35 TEA BREAK
14.55 Session IV: Discussion
7. Antina de Jong MA LLM, Bioethics, Maastricht University, The Netherlands
A brief presentation will be given of the main outcomes of the Dutch CSG2-project on ‘Individualized choice in prenatal screening’. The main points emerging from the previous presentations will be summarized and challenges that require further discussion identified.
15.25 First Round of Group Discussions
Speakers and audience will be divided in 4 subgroups each of which will be asked to discuss relevant theme’s. Statements prepared by the organizing committee together with the speakers beforehand will be provided in order to get these discussions off the ground.
17.00 Plenary conclusion, in which a representative from each of the groups reports their provisional conclusions.
17.30 Closing of the first day

Day TWO
09.00 Opening of the second day by dr W Dondorp, Ethicist, University Maastricht, The Netherlands,
Dondorp will briefly summarize the main issues that emerged from the first day and identify topics that require further discussion.
09.15 Second Round of Group Discussions
Each of the four groups will be asked to reflect on a specific topic and think about possible recommendations for public policy, professional guidelines, further research or societal debate.
10.40 COFFEE BREAK
11.00 Final plenary session
In this final session, the findings from the subgroups will be reported back as a starting point for formulating recommendations from the workshop. These will address policy makers, professionals and users.
12.45 Closing of the conference
13.00 Lunch and farewell