Abstract
Informed consent is a key condition for prenatal screening programmes to reach their aim of promoting reproductive autonomy. Reaching this aim is currently being challenged with the introduction of non‐invasive prenatal testing (NIPT) in first‐trimester prenatal screening programmes: amongst others its procedural ease—it only requires a blood draw and reaches high levels of reliability—might hinder women’s understanding that they should make a personal, informed decision about screening. We offer arguments for a renewed recognition and use of informed consent compared to informed choice, and for a focus on value‐consistent choices and personalized informational preferences. We argue for a three‐step counselling model in which three decision moments are distinguished and differently addressed: (1) professionals explore women’s values concerning whether and why they wish to know whether their baby has a genetic disorder; (2) women receive layered medical‐technical information and are asked to make a decision about screening; (3) during post‐test counselling, women are supported in decision‐making about the continuation or termination of their pregnancy. This model might also be applicable in other fields of genetic (pre‐test) counselling, where techniques for expanding genome analysis and burdensome test‐outcomes challenge counselling of patients.
Highlights
In many countries, when a pregnant woman first visits an obstetric care provider, she will be offered information about several prenatal screening tests
Some tests are offered to promote the health of mother or child, for example screening for Rhesus factor
Eline Bunnik, is an Assistant Professor at the Department of Medical Ethics, Philosophy and History of Medicine at Erasmus MC, who studies the ethical implications of technological innovations for the healthcare system, and is interested in genetic testing, prenatal screening, organ transplantation, research ethics, and access to new medical treatments
Summary
In many countries, when a pregnant woman first visits an obstetric care provider, she will be offered information about several prenatal screening tests. Women should be prompted to think about whether they want to have the options (termination or preparation in case of a genetic disorder) that prenatal screening provides them in order to plan their lives This is in line with the notion that informed consent includes a more active decision-making process than informed choice.. The three-step counselling model might fulfil women’s needs of support in making a decision according to their beliefs and help counsellors to facilitate reflection on women’s choices for or against prenatal screening It might protect those women who are less able to understand information and formulate their personal values and promote their reproductive autonomy, corresponding to what is stated by O’Neill: ‘Informed consent procedures protect choices that are timid, conventional and lacking in individual autonomy (variously conceived) just as much as the protect choices that are self-assertive’.54. This is established by counselling and by the broader societal context, in which provision of care and support should be in place for those who choose to continue a pregnancy when it is known that the child born will have a disability, as well as for those who choose to terminate the pregnancy
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