Ethical aspects of neonatal screening for sickle cell disease in Western European countries

Abstract

Sickle cell disease raises some important ethical questions regarding neonatal screening in Western European countries such as France, England or Belgium, which have already introduced either universal or selective screening. Such screening is aimed at benefiting children affected with major sickle cell syndrome. It also detects heterozygous babies and, in doing so, heterozygous parents. The latter information, which is ignored most of the time, risks making parents feel guilty and can raise fears of stigmatization. Whether it would change their future reproductive decisions requires further studies, for cultural and religious reasons may have a strong negative influence on the request for prenatal diagnosis. Disclosure of the child's illness may oblige the family to remain in the country they have emigrated to because it offers the best chance of treatment. As a result, links between the family and its original community are modified. Parents must more or less sever links with their family in Africa and try to trust and adapt to the public health services in Europe. Conclusion: Neonatal screening of sickle cell disease is highly ethical in facilitating the prevention of the early death of affected children. It also detects heterozygous parents and offers at‐risk couples the possibility to perform a prenatal diagnosis during the next pregnancy. Adequate counselling must consider the risk of stigmatization that carrier status represents, especially for women in many cultural beliefs, and the numerous cultural and religious reasons which limit parental uptake for prenatal diagnosis. Disclosure of their child's illness may oblige immigrant families to stay in Europe, where free and adapted healthcare is available.

Expanded newborn screening: social and ethical issues

“…It has been often stated that identification of healthy carrier infants is Principles and practice of screening for disease (Wilson andJungner 1968) 1979 Principles of Biomedical Ethics (Beauchamp andChildress 1979) 1979 The Belmont report ( The changing moral focus of newborn screening: an ethical analysis by the President's Council on Bioethics (2008) seen by some health professionals as undesirable because of its potential for unjustified anxiety about the health of the newborn (Lewis et al 2006). The information of a carrier status can also raise fears of stigmatization (misuse by insurers, employer), fears that are evident in many ethnic minorities (labeling a person or family as having undesirable characteristics) (Dhondt 2007b;De Montalembert et al 2005). In practice, not all NBS programs inform parents of carrier results.…”

Sickle cell disease as a paradigm of immigration hematology: new challenges for hematologists in Europe

“…Targeted screening is used in many European countries, restricting tests to mothers and neonates whose parents originate from high prevalence countries. 25,37 In low prevalence areas various types of Family Origin Questionnaire have now been validated as an accurate tool for the identification of women and their partners at risk of being carriers for HbS or other abnormal sickle hemoglobins (eg HbC and HbD).…”

“…Many countries have made the development of a comprehensive and reliable neonatal/antenatal screening programme a key strategy in their goal of delivering optimal health care to all patients with sickle cell disease, [25][26][27][28] www.screening.nhs.uk/sickleandthal. However, it is also clear that, despite the inherent practical, political and economic difficulties, progress is also being made in many endemic countries, including Nigeria, Ghana, Burkina Faso, Cameroon, Guinea-Bissau, Sudan, India and Brazil, 9,29-34 www.ghanaweb.com; www.scinfo.org.…”

National newborn screening for sickle cell disease and communication of carrier status

“…[1][2][3] Though, timely access to penicillin antibiotic therapy and pneumococcal vaccination significantly reduce the number of lifelong vaso-occlusive events. [4][5][6][7] This therapeutic benefit supports the implementation of newborn screening (NBS) for SCD in Western European countries. [1][2]4 In the 90s, Portugal tried to implement a screening program for SCD, carrying out a pilot study centred on a maternity hospital in Lisbon.…”

“…[4][5][6][7] This therapeutic benefit supports the implementation of newborn screening (NBS) for SCD in Western European countries. [1][2]4 In the 90s, Portugal tried to implement a screening program for SCD, carrying out a pilot study centred on a maternity hospital in Lisbon. 2,5 The low number of identified carriers at the time and the lack of identification of any patient affected with SCD hindered the expansion of screening to the rest of the country.…”