‘A world without Down’s syndrome’ – an evaluation of foetal diagnosis in light of the ethos of medicine

Abstract

This article is an ethical evaluation of two familiar views in the debate on foetal diagnosis; one being the mainstream view in medical texts emphasizing early detection of foetuses with Down´s syndrome so they may be aborted, and the other coming from Down´s syndrome activists claiming that such screening is never acceptable. The core question asked is: What ethical weaknesses in modern medical practice does this discussion reveal? I argue that the marketization of noninvasive prenatal testing (NIPT) and the mainstream discussion in the health sector on its application shows two trends undermining the traditional ethos of medicine. Firstly, that doctors are, in their work, concentrating on diseases as isolated entities, whereas the patient and her life remains in the shadow. Secondly, the emphasis has been on the scientific foundation of medicine where the clinical evaluation of these scientific facts has not received due attention.

Points of interest

• This article is about how we can evaluate ethically two different views on tests done on foetuses.

• It describes how some medical texts talk about tests done on foetuses to see if they have Down’s syndrome; and secondly, how some people with Down´s syndrome and their families talk about such tests.

• The medical view is criticized for failing to understand the importance of the lives of people with Down´s syndrome and for not taking their views of the value of their lives seriously.

• The medical texts focus on diseases instead of patients. Thus they tend to ignore the life and value of the person having the disease.

• The medical view is mainly about science and facts. It ignores the question of whether and how these facts matter for the patient.

• People with Down´s syndrome and their families have criticized this medical approach. Their criticism is very important.

Keywords:

• NIPT
• Down’s syndrome
• medicine
• ethics
• foetal diagnosis

Acknowledgements

This paper has benefited much from the critical comments and suggestions of anonymous reviewers as well as from my Ph.D. supervisor, Dr Vilhjalmur Arnason, and from the members of my PhD committee, Dr Bjorn Hofmann and Dr Stefan Hjorleifsson. I also want to thank my colleagues Dr Gudrun Stefansdottir, Dr Kristin Bjornsdóttir, Dr Dora S. Bjarnason, Dr Hanna Bjorg Sigurjonsdottir and Dr Snaefridur Egilsson for their valuable insights and advice.

Disclosure statement

No potential conflict of interest was reported by the author.