Peter D. Young

Background Healthcare professionals have ethical duties to provide information according to conceptions of the doctor-patient relationship, and one way this responsibility is established in practice is by UK guidance on shared decision making. Non-invasive prenatal testing (NIPT) is a relatively new prenatal screening test offered by the UK National Health Service (NHS) since 2021. Since NIPT has different characteristics when compared to other prenatal screens and tests—such as the combined test and amniocentesis—it is not clear how information should be offered in a pre-test consultation. Key to answering this question is to understand more about the HCP-patient relational dynamics surrounding the offer of NIPT. Previous studies have focused on the woman’s role in this; the views and attitudes of pregnant women about decision making in the offer of NIPT has been interrogated elsewhere. However, little attention has been given to the views and attitudes of healthcare professionals (HCPs) and how those views might shape the dynamics of how NIPT is offered and how the decision-making process goes. Methods This study carried out qualitative interviews with 20 UK HCPs who offered NIPT and/or provided counselling for NIPT. Findings from the interviews were analysed and themes were developed about how HCPs reported they offered NIPT and their reasons for this. Results HCPs say they conveyed information about the nature of NIPT to women when offering the test. This includes how HCPs say they described the risks of NIPT, their views about clarifying the non-diagnostic nature of NIPT, how they explained NIPT accuracy to women, and how they stressed that decisions about test options were up to the patient. HCPs also reported how they distinguished NIPT from other screens and tests and described NIPT as a different category of screening test. Furthermore, many HCPs say they either provided predetermined information to patients or reported being patient-led in the offer. Conclusions This study explores how HCPs reported the offer of NIPT and also how they thought the offer should go, by giving their reasons for what they report. This indicates their normative sense of which information ought to be given (that is, what they believed was critical to provide for decision making). It also indicates which aspects within the offer they believed should be emphasised or played down. The accounts reported here of HCPs’ experiences raise questions about how information should be provided to women in the offer of NIPT. This might help us establish better practices of informing women who use NIPT. Results of this study have a number of implications for the ethics of prenatal testing in practice. Firstly, they indicate a need for better guidance and education about how to discuss certain informational aspects within the offer such as NIPT characteristics and statistics. Secondly, they show that aspects of the current offer may be value-laden, and the way HCPs counsel patients about NIPT may be insufficiently patient-led. More research in this area might tell us whether different guidance or educational opportunities ought to be developed to help HCPs discuss NIPT and its characteristics. Clinical trial number Not applicable.

The UK government has recently committed to adopting a new policy—dubbed ‘Martha’s Rule’—which has been characterised as providing patients the right to rapidly access a second clinical opinion in urgent or contested cases. Support for the rule emerged following the death of Martha Mills in 2021, after doctors failed to admit her to intensive care despite concerns raised by her parents. We argue that framing this issue in terms of patient rights is not productive, and should be avoided. Insofar as the ultimate goal of Martha’s Rule is the provision of a clinical service that protects patient safety, an approach that focuses on the obligations of the health system—rather than the individual rights of patients—will better serve this goal. We outline an alternative approach that situates rapid clinical review as part of a suite of services aimed at enhancing and protecting patient care. This approach would make greater progress towards addressing the difficult systemic issues that Martha’s Rule does not, while also better engaging with the constraints of clinical practice.

We suggest that in the particular context of medical education, ethics can be considered in a similar way to other kinds of knowledge that are categorised and shaped by academics in the context of wider society. Moreover, the study of medical ethics education is translational in a manner loosely analogous to the study of medical education as adjunct to translational medicine. Some have suggested there is merit in the idea that much as translational research attempts to connect the laboratory scientist's work to its implications for patient care, translational ethics focuses on bringing ethics scholarship into the sphere of personal and public action. We distinguish the term ‘translational ethics’ (the study of ethics being translated between academy, classroom and clinic) from other prominent definitions in the bioethics literature. To do this, we build off a notion of knowledge translation that focuses on the nonlinear movement of information that comes to professionals through multiple competing sources. We suggest that this knowledge, and particularly knowledge about ethics, becomes embodied by the individual. It is through a reflective practice that internally embedded ethics knowledge might be modified, and this work might be best carried out with a moral community that maintains a sense of practical wisdom. Applying this translational approach to the study of medical ethics education can be both academically relevant and practically useful. This view of translation can help bridge the evident, multidirectional relationships between research, education and performance. It might also create further opportunities to develop medical ethics education theory.

All healthcare professionals (HCPs) have responsibilities to provide information to patients according to the duties found within UK decision-making guidance and with regards to theory about the doctor-patient relationship. While routinisation can be understood in a number of different ways, this paper is concerned with how routines might negatively affect patients in the decision-making process. Therefore, in this manuscript, medical decision making is understood as problematically routine when a medical test or procedure is framed as a standard one and—given the way options are presented—it is implied that someone can decide to use that test or treatment without being given sufficient opportunities to think through their choices. Routinisation, when understood in this way, can affect the quality and amount of information provided to patients and the ways in which patients reflect upon their choices when making decisions. With the introduction of non-invasive prenatal testing (NIPT) into the UK healthcare system, bioethicists have questioned whether this new technology will be routinised and what the implications of routinisation on the decision-making process might be. While there have been numerous studies investigating the views and attitudes of pregnant women who use NIPT, there are fewer studies that look at the views and attitudes of healthcare professionals (HCPs). This study interviewed 20 UK-based HCPs who either offer NIPT or counselled pregnant women on the use of NIPT. One important finding was that many HCPs held the attitude that the NIPT decision-making process had become routine, however there was disagreement about whether routine NIPT was problematic or not. This study provides insights about the context that surrounds decision making for NIPT, and it raises important questions about how NIPT routinisation might be evaluated.