Preconception care and genetic risk: ethical issues

Department of Health, Ethics & Society, Faculty of Health, Medicine & Life Sciences, Research Schools CAPHRI and GROW, Maastricht University, Maastricht, The Netherlands.
Journal of community genetics 12/2011; 3(3):221-8. DOI: 10.1007/s12687-011-0074-9
Source: PubMed

ABSTRACT Preconception care to address genetic risks in reproduction may be offered either individually to couples with a known or suspected increased risk of having a child with a genetic disorder, or systematically to couples or individuals of reproductive age. The identification of couples at risk of transmitting a (serious) genetic disorder allows those couples to refrain from having children or to adapt their reproductive plans (using prenatal or preimplantation diagnosis, donor gametes, or adoption). Ethical issues concern the possible objectives of providing these options through preconception genetic counseling or screening, objections to abortion and embryo-selection, concerns about eugenics and medicalization, and issues arising in the professional-client relationship and/or in the light of the normative framework for population screening. Although enhancing reproductive autonomy rather than prevention should be regarded as the primary aim of preconception care for genetic risks, directive counseling may well be acceptable in exceptional cases, and prevention in the sense of avoiding serious suffering may be an appropriate objective of specific community-based preconception screening programmes. The seemingly unavoidable prospect of comprehensive preconception screening raises further ethical issues.

  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: The preventative paradigm of preconception care is receiving increasing attention, yet its boundaries remain vague in three respects: temporally; agentially; and instrumentally. Crucially, it remains unclear just who is to be considered a 'potential parent', how soon they should take up preconception responsibilities, and how weighty their responsibilities should be. In this paper, we argue that a normal potential parent of reasonable prudence has a moral duty to adequately optimize the conditions under which she or his reproductive partner will conceive, though a proportionality calculus calls for toleration of several forms of preconception behaviour that are non-ideal from the perspective of reproductive risk. We distinguish between five categories of potential parents to which different duties of preconception care should be ascribed. This framework is advanced to assign preconception care responsibilities with more precision than is often done in the current debate on preconception care. We conclude by applying our theoretical framework to three types of preconception care interventions: consumption of folic acid; keeping one's weight under control; and engaging in preconception genetic screening. Our analysis shows that the literature on preconception care often glosses over crucial distinctions between different types of potential parents and uses a notion of preconception beneficence that may be overly demanding. Nevertheless, preconception moral duties will often be weighty and reluctance to accept such duties on account of the burden they impose do not warrant preconception insouciance. To avoid misplaced responsibility ascriptions in the growing field of preconception care, distinctions must be made between different types of potential parents to whom different degrees of preconception responsibility apply. We present such a preliminary framework and bring it to bear on the cases of folic acid consumption, obesity and genetic testing.
    BMC Medical Ethics 01/2014; 15(1):5. DOI:10.1186/1472-6939-15-5 · 1.60 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Heart disease complicates 1–2% of pregnancies, and in preparation for pregnancy, these women should receive comprehensive preconception counseling. Risks to the mother and potential risks to the offspring secondary to the type and severity of maternal cardiac disease, its inheritance pattern, required medical therapy, and palliative or corrective procedures that may be needed must be considered. Life expectancy and the ability to care for a child are somber issues that must be addressed when serious cardiac conditions exist. Pregnancy is still contraindicated in women with pulmonary hypertension, severe systemic ventricular dysfunction, dilated aortopathy, and severe left-sided obstructive lesions, but advances in medical and surgical management have resulted in an increasing number of patients with cardiac disorders who are interested in pursuing pregnancy. A multidisciplinary approach can best determine whether acceptable outcomes can be expected and what management strategies may improve the prognosis for women with heart disease and their offspring.
    Seminars in Perinatology 08/2014; DOI:10.1053/j.semperi.2014.04.011 · 2.42 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Prenatal screening pathways, as nowadays offered in most Western countries consist of similar tests. First, a risk-assessment test for major aneuploides is offered to pregnant women. In case of an increased risk, invasive diagnostic tests, entailing a miscarriage risk, are offered. For decades, only conventional karyotyping was used for final diagnosis. Moreover, several foetal ultrasound scans are offered to detect major congenital anomalies, but the same scans also provide relevant information for optimal support of the pregnancy and the delivery. Recent developments in prenatal screening include the application of microarrays that allow for identifying a much broader range of abnomalities than karyotyping, and non-invasive prenatal testing (NIPT) that enables reducing the number of invasive tests for aneuploidies considerably. In the future, broad NIPT may become possible and affordable. This article will briefly address the ethical issues raised by these technological developments. First, a safe NIPT may lead to routinisation and as such challenge the central issue of informed consent and the aim of prenatal screening: to offer opportunity for autonomous reproductive choice. Widening the scope of prenatal screening also raises the question to what extent 'reproductive autonomy' is meant to expand. Finally, if the same test is used for two different aims, namely detection of foetal anomalies and pregnancy-related problems, non-directive counselling can no longer be taken as a standard. Our broad outline of the ethical issues is meant as an introduction into the more detailed ethical discussions about prenatal screening in the other articles of this special issue. © 2014 John Wiley & Sons Ltd.
    Bioethics 01/2015; 29(1):1-8. DOI:10.1111/bioe.12123 · 1.36 Impact Factor

Preview (2 Sources)

Available from