“Another pandora’s box”: Stakeholders’ views on disclosing incidental findings detected through non-invasive prenatal testing
Molly Johnston1, Catherine Mills1, Monash University Clayton 1Monash University, Clayton, VIC, Australia
Abstract
Non-invasive prenatal testing (NIPT) is not only able to detect fetal chromosomal anomalies, but it may also reveal incidental findings (IFs) in the pregnant person, such as genetic conditions or neoplasia. Several professional societies recommend that IFs are discussed in pre-test counselling, however, they provide little guidance on what to do if one is detected.
In this paper, we examine the ethical values invoked by key stakeholders when considering the disclosure of IFs detected through NIPT. We draw upon empirical evidence collected through two national surveys with healthcare professionals (HCPs) working in antenatal healthcare (n=475) and women who recently conceived a pregnancy (n=677), in Australia.
The majority of women (84%) and HCPs (62%) thought the pregnant person should decide whether to receive IFs detected through NIPT. Participants shared similar reasons for preferencing the offer of results, for example, the right not to know, and promoting patient autonomy. However, not all agreed; 28% of HCPs thought it would be negligent not to convey all relevant health information, instead supporting mandatory disclosure of IFs. Concerns were also raised about conflating fetal and maternal screening, the chance of harm from additional medical investigations and patient anxiety, and the adequacy of pre-test counselling to obtain informed consent for disclosure preferences.
Opinions on the disclosure of IFs depend on the weightings assigned to competing values, particularly patient autonomy, non-maleficence, and professional responsibility. We argue that regardless of what disclosure model is implemented, pre-test counselling on the potential for IFs is necessary to support patient autonomy.
Biography
Dr Molly Johnston is a Postdoctoral Research Fellow and Assistant Lecturer at the Monash Bioethics Centre, Monash University. Molly has a background in reproductive science but her current research falls within the intersection between social science, bioethics, and regulation. Her research interests are the ethical and social issues raised by human reproductive technologies, in particular ART and prenatal genetic testing.