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


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.

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Available from: Bartha Maria Knoppers, Oct 27, 2015
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    • "The use of donor gametes, adoption or remaining childless should also be offered to allow a couple to make fully informed reproductive choices. Preconception counselling raises important ethical challenges which are clearly elaborated in the paper by De Wert et al. (2012) "

    Journal of community genetics 06/2012; 3(3):155-7. DOI:10.1007/s12687-012-0106-0
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    ABSTRACT: STUDY QUESTION: What do scientists in the field of preimplantation genetic diagnosis (PGD) and preimplantation genetic screening (PGS) consider to be the future direction of comprehensive embryo testing? SUMMARY ANSWER: Although there are many biological and technical limitations, as well as uncertainties regarding the meaning of genetic variation, comprehensive embryo testing will impact the IVF/PGD practice and a timely ethical reflection is needed. WHAT IS KNOWN ALREADY: Comprehensive testing using microarrays is currently being introduced in the context of PGD and PGS, and it is to be expected that whole-genome sequencing will also follow. Current ethical and empirical sociological research on embryo testing focuses on PGD as it is practiced now. However, empirical research and systematic reflection regarding the impact of comprehensive techniques for embryo testing is missing. STUDY DESIGN, SIZE AND DURATION: In order to understand the potential of this technology and to be able to adequately foresee its implications, we held an expert panel with seven pioneers in PGD. PARTICIPANTS/MATERIALS, SETTING, METHODS: We conducted an expert panel in October 2011 with seven PGD pioneers from Belgium, The Netherlands, Germany and the UK. MAIN RESULTS AND THE ROLE OF CHANCE: Participants expected the use of comprehensive techniques in the context of PGD. However, the introduction of these techniques in embryo testing requires timely ethical reflection as it involves a shift from choosing an embryo without a particular genetic disease (i.e. PGD) or most likely to result in a successful pregnancy (i.e. PGS) to choosing the best embryo based on a much wider set of criteria. Such ethical reflection should take account of current technical and biological limitations and also of current uncertainties with regard to the meaning of genetic variance. However, ethicists should also not be afraid to look into the future. There was a general agreement that embryo testing will be increasingly preceded by comprehensive preconception screening, thus enabling smart combinations of genetic testing. LIMITATIONS, REASONS FOR CAUTION: The group was composed of seven participants from four Western Europe countries. As willingness to participate in this study may be connected with expectations regarding the pace and direction of future developments, selection bias cannot be excluded. WIDER IMPLICATIONS OF THE FINDINGS: The introduction of comprehensive screening techniques in embryo testing calls for further ethical reflection that is grounded in empirical work. Specifically, there is a need for studies querying the opinions of infertile couples undergoing IVF/PGS regarding the desirability of embryo screening beyond aneuploidy. STUDY FUNDING/COMPETING INTEREST(S): This research was supported by the CSG, Centre for Society and Life Sciences (project number: 70.1.074). The authors declare no conflict of interest. TRIAL REGISTRATION NUMBER: N/A.
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