Bunnik and colleagues argued that financial barriers do not promote informed decision-making prior to prenatal screening and raise justice concerns. If public funding is provided, however, it would seem to be important to clarify its intentions and avoid any unwarranted appearance of a medical utility of the testing.
- genetic counselling/prenatal diagnosis
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Bunnik and colleagues made an important contribution to a highly topical debate concerning ethical aspects of funding policies for prenatal screening.1 However, their case for public funding of non-invasive prenatal testing (NIPT) is not completely convincing. They clearly spell out the flaws of the two major rationales in favour of financial barriers. But recognising that financial barriers will not bring the intended effects, is not a sufficient justification for implementing a reimbursement of costs. Nor is it enough to refer to concerns of justice and equal access as long as the primary causes for funding these procedures remain unclear and obviously distressing for some.
The current public discourse on the new NIPT procedures especially for trisomy 21, the cause for Down syndrome, in many countries seems to reflect a growing unease. Petitions are written against the ‘sorting out’, the ‘screening out’ and the ‘discrimination’ of people with Down syndrome.1 The Federal Joint Committee (G-BA), the joint self-government of physicians, dentists, hospitals and health insurance funds in Germany, recently decided about reimbursement for NIPT for the trisomies 13, 18 and 21 for high-risk pregnancies2 and declared this to be a question with a fundamental ethical relevance which needs a societal as well as a political debate on how to implement the new prenatal testing.2 The British Medical Association argued for a formal governmental consultation process on the views of the public and healthcare professionals on NIPT and an ethical review of the new practice.3 Wales as the first country in the UK which introduced NIPT on the National Health Service (NHS) has been accused for pushing women towards the termination of pregnancy with biassed information leaflets.3 At the same time, several states in the USA (eg, Utah and Arkansas) are considering or trying to enact a ban on abortions if a Down syndrome in the fetus is the only reason for it.4
Since screening and testing procedures for trisomy 21 in order to inform reproductive choices have been an accepted and frequently requested part of prenatal care for >30 years in many countries, the current shift in public perception is remarkable. I would like to argue that it is not exclusively the expected effects of a free availability of NIPT that cause concern, but also the expressed or implied reasons for a public funding of NIPT in healthcare.
The reasons for funding: medical utility and justice
Entitlements in healthcare are usually depending on pathology (deviations from normal functioning) and—according to the influential account of Norman Daniels—gain moral importance inasmuch as these deviations prevent patients from their normal range of opportunities in society.4 Funding then is used with the intention to protect fair equality of opportunity and ‘counter disadvantages induced by pathology’4 by—for example—prevention and treatment. Services in the context of prenatal screening, in contrast, are often triggered by the wishes and preferences of the pregnant woman, do not lead to preventive or therapeutic options and, thus, do not seem to fit into the typical categories of entitlements in healthcare. In the absence of maternal or fetal health goals, it, for example, has been held that prenatal screening and funding for prenatal screening in a healthcare system should be limited to serious congenital and childhood disorders.5 Munthe demanded a ‘drastic downscaling’ of prenatal testing in national health services ‘to target a much more narrowly selected range of particular severe conditions’.6 Stapelton and colleagues demonstrated how a public funding of prenatal screening for severe congenital and childhood disorders could be important to protect the pregnant woman’s (mental) health during parenthood and would therefore be justifiable in accordance with Daniel’s theory of ‘Just health’.7 The authors did not further specify which disorders would meet the claimed criteria. But they outlined the availability of parental support like paediatric care, specialist schooling or specified counselling as important factors which could help redressing health needs of parents of children with certain serious disorders and weaken entitlements to prenatal screening for these disorders.7 As a common motive, the current debate is increasingly questioning that there are indeed health goals which can be pursued by prenatal screening for Down syndrome and similar conditions. Any justification for public funding in healthcare, however, relies on the definition of health goals. Where no such goals can be identified, the public funding is rightfully questioned.
A second aspect might be worth noting in this context: because public funding in healthcare systems is regularly linked to the promotion of important health goals, it potentially is suggestive of such health goals as soon as it is implemented. Whenever a public funding for a certain procedure is provided, people might assume that this provision is justified by important health goals. In other words: if public funding for prenatal screening for trisomy 21 is implemented in a healthcare system, it might suggest a medical utility of the testing and, thus, promote acceptance on the basis of mistaken premises. That public funding in many countries is granted exclusively for so-called high-risk pregnancies (pregnancies with an individually increased probability of trisomy 21 (or other trisomies) in the fetus) further supports the appearance of a medical utility. An influenza vaccination, for example, is typically reimbursed for those who benefit most in terms of individual health goals (people with chronic diseases, elderly people) or for those whose vaccination is beneficial in a public health perspective (children). Individual or public health risks help define the respective categories. In prenatal screening for trisomy 21, individual health goals remain to be identified and public health goals are rejected as discriminatory. When the main justification for testing is autonomy-based, however, the benefit is not limited to the small group with a positive test result (higher probability of trisomy 21 in the fetus). It can be as beneficial in autonomy terms to receive a negative result. To distribute limited resources in a healthcare system in relation to individual risks and probabilities is a sound concept for treatable or preventable diseases, but it does not work for conditions that do not fulfil either of the two criteria.
Bunnik and colleagues concluded that financial barriers do not promote informed decision-making of pregnant women or couples and raise justice concerns. If public funding is provided, however, it would seem to be important to clarify its intentions and avoid any unwarranted appearance of a medical utility of the testing. In the absence of relevant maternal or fetal health goals, funding might not be a matter of healthcare which would mean that it should not be conditional on individual risks or probabilities. It instead could be understood as a matter of social justice. Providing reimbursement or social assistance for prenatal screening and NIPT for women with low income for a certain range of disorders (as also suggested by Bunnik and colleagues) would prevent unfair discrimination without pretending that important health goals are promoted by the procedure. Maybe that would be a way of appreciating the current concerns and fears expressed by a variety of stakeholders worldwide in relation to the public funding of NIPT.
Contributors DS is the sole author of this paper. She is a physician and clinical ethicist with a special interest in ethical aspects at the beginning of life. She also worked as a genetic counsellor and supported pregnant women and couples after prenatal testing. Since 2013, she is an appointed member of the Commission on Genetic Testing (GEKO) in Germany. This article reflects the personal opinion of the author exclusively.
Funding The author has not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; internally peer reviewed.
↵ https://www.change.org/p/menschen-mit-downsyndrom-sollen-nicht-aussortiert-werden-ich-will-nicht-dass-die-krankenkasse-den-bluttest-bezahlt-goeringeckardt-tonihofreiter-dietmarbartsch-swagenknecht-c-lindner-andreanahlesspd-rbrinkhaus (accessed 8/10/2019) http://stopdiscriminatingdown.com/ (accessed 8/10/2019) https://dontscreenusout.org/ (accessed 8/10/2019) https://www.endangeredsyndrome.com/ (accessed 8/10/2019).
↵ https://www.g-ba.de/presse/pressemitteilungen/635/ (accessed 8/10/2019).
↵ https://www.nytimes.com/2019/03/21/us/abortion-laws-states.html (accessed 8/10/2019).
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