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Preconception Care: Concepts and Perceptions an Ethical Perspective

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Preconception Care: Concepts and Perceptions an Ethical Perspective Preconception Care: Concepts and Perceptions An ethical perspective Boukje van der Zee ISBN 978-90-820215-0-9 Copyright © 2013 Boukje van der Zee All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or trans- mitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the author or the copyright-owning journals for previously published chapters. Cover image: Van Look KJW, Dzyuba B, Cliffe A, Koldewey HJ, Holt WV, Dimorphic sperm and the unlikely route to fertilisation in the yellow seahorse, The Journal of Experimental Biology 2007;210:432- 437. Image used with permission of the authors. Printed by Optima Grafische Communicatie BV (www.ocg.nl) The work presented in this thesis was funded by the Netherlands Organisation of Health Research and Development (ZonMw, Grant No. 63300024) This thesis was printed with financial support of the Department of Medical Ethics and Philosophy of Medicine Erasmus MC, the Department of Obstetrics and Gynaecology Erasmus MC and Erasmus University Rotterdam. Preconception Care: Concepts and Perceptions An ethical perspective Preconceptiezorg: concepten en percepties Een ethisch perspectief Proefschrift ter verkrijging van de graad van doctor aan de Erasmus Universiteit Rotterdam op gezag van de rector magnificus Prof.dr. H.G. Schmidt en volgens besluit van het College voor Promoties. De openbare verdediging zal plaatsvinden op Vrijdag 15 februari 2013 om 13.30 uur door Boukje van der Zee geboren te Nijmegen Promotiecommissie Promotoren: Prof. dr. I.D. de Beaufort Prof. dr. E.A.P. Steegers Prof. dr. G.M.R. de Wert Overige leden: Prof. dr. D.D.M. Braat Prof. dr. H.J. de Koning Prof. dr. M.H.N. Schermer Een verhaal begint De wereld is nooit klaar voor de geboorte van een kind. (Wislawa Szymborska, ‘Een verhaal begint’, Einde en Begin, 1998) Contents Chapter 1 General introduction 9 Part I Concepts Chapter 2 Preconception care: an essential preventive strategy to improve 23 children’s and women’s health Chapter 3 Preconception care: a Parenting Protocol. A moral inquiry into the 35 responsibilities of future parents towards their future children Chapter 4 Responsible fatherhood. The role of evidence in the ethics of paternal 49 preconception lifestyle adjustments Chapter 5 Preconception care and medicalisation 63 Part II Perceptions Chapter 6 Associations between women’s intention to seek preconception 77 counseling, their risk profile and personal motives: a cross-sectional study using a web-based instrument Chapter 7 Perceptions of preconception counseling among women planning a 91 pregnancy: a qualitative study Chapter 8 Informing on prenatal screening for Down syndrome prior to 105 conception. An empirical and ethical perspective Chapter 9 General discussion 133 Summary 151 Samenvatting 159 Dankwoord 167 About the author 173 C hapter 1 General Introduction General introduction To say that having a baby is one of life’s richest, most rewarding experiences is a cliché that is nevertheless true. There is just nothing else quite like bringing new life into the world- the wait- ing, the wonder, the magic of creating enduring bonds of intimacy and sharing love. … For such an overwhelmingly important area of our lives, pregnancy, across the board, is stumbled and bumbled into. … There is, thankfully, a much better, safer, saner way to go to about this. We call it Prepregnancy Medicine.1 Please notice: preconception care is not directed at prospective parents expecting a baby, but at prospective parents wishing to become pregnant. The time that one could become pregnant eas- ily, pleasantly and happily is over. All that currently matters is getting a healthy baby.2 Preconception care at a glance General individual preconception care is a new strategy to improve the health of future children and their mothers –and to a lesser extent the prospective fathers’ health- through primary intervention.3 Improving their health through preconception care comprises two component actions. The first is to impart relevant information to prospective parents, thereby improving knowledge. The second is to modify individual behaviour based on the knowledge gained.4 General individual preconception care anticipates on both these components and entails risk assessment, health promotion, counselling, and interventions. Risk assessment is the systematic identification and evaluation of risk factors for so-called adverse ‘pregnancy outcomes’. Risk factors vary widely and include not taking folic acid supplements, using medication that can cause malformations or functional damage to an embryo, overweight, smoking, diabetes or having an inheritable disease. Health promotion means informing and educating couples on how to improve their health in order to improve the future child’s health, including avoiding alcohol and tobacco, and the importance of proper nutrition and exercise. Prospective parents are counselled about additional screening, diagnostic tests, and specialist consultations that may be necessary if risks are identified. Intervention refers to efforts to modify or eliminate risk factors.5 Forms of preconception care The recent development of general individual preconception care takes place in addition to other forms of preconception care, which have existed for some time: specialist individual preconception care and collective measures.3 The term ‘collective measures’ is used when actions are aimed at a group of people as a whole and not individually tailored. An example of a collective measure with an impact on preconception care is an education campaign con- cerning the use of folic acid. Some of these measures apply to all women (and often also to 11 Chapter 1 men), regardless of whether or not they wish to have children.3 Specialist individual pre- conception care may be offered to couples at increased risk of adverse effects on the child’s health, including couples with complicated medical, obstetrical, or family histories. General individual preconception care may be offered to all people of reproductive age or focused on couples planning to become pregnant.5 In this thesis, general individual preconception care is discussed, focused on couples planning to become pregnant. Goals and beneficiaries of preconception care Preconception care aims to improve the health of future children and their mothers and to a lesser extent the prospective fathers’ health. Furthermore, it aims to improve couples’ informed decision-making by providing information on reproductive options. It aims as well at improvements and cost savings at the public health level. Following these goals, three beneficiaries of preconception care can be distinguished. The primary beneficiary of preconception care is the child, as it optimises the conditions for intrauterine growth and development. In general, antenatal care starts after the 12th week of pregnancy, neglecting the first gestational weeks, during which key embryonic growth and development take place and may be associated with adverse effects on the child’s health.6-8 To improve prospective parents’ knowledge of these first weeks being crucial for the child’s health, it is important that prospective parents are informed about potential risks before pregnancy. Preconception care, therefore may be a good way to assure appropriate actions to avoid risks in early pregnancy. Additionally, preconception care can be seen as a window of opportunity to women’s health, as through preconception care the woman may optimally prepare her body for a pregnancy. In addition, the changes induced by preconception care are also usually beneficial to the prospective parents’ health. Furthermore, preconception care may increase awareness of possible health risks, contributing to a healthy lifestyle, also later in life.9,10 Also, receiving information through preconception care consultation increases the prospective parents’ options in the process of becoming pregnant, as it enables them to make informed choices: they will be informed if they choose to be informed; they can choose whether or not to live according to the lifestyle advice given; and in case of a severe inheritable disease, they may choose not to intervene at all, choose for medically assisted conception in combination with embryo selection, choose to forego parenthood, or they may choose to adopt a child. Another benefit of preconception care is the improvement of public health, which is a result of the improvement of the individual’s (prospective parents’ and future children’s) health. Furthermore, preconception care serves as an opportunity to screen for current and future health threats like malnutrition and obesity. As a public health strategy, preconception care may be a rewarding and cost-effective preventive strategy. The former Dutch Minister of 12 General introduction Health estimated the annual costs of implementing preconception care consultations, if all future pregnant women were interested, at €7 million.11 In light of the many preventable ad- verse outcomes and the potential for preconception care to prevent significant lifetime costs for affected children, preconception care is likely to be cost-effective in the Netherlands.12 Organisation of preconception care The organisation and content of preconception care depend on the national health-care infra- structure, insurance systems, and socio-economic factors. For example, in the United States, where only 50 percent of pregnancies are planned,13 preconception
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