Is easier better? Public attitudes towards non-invasive pre-natal testing (2008-2010)
Susan Kelly and Hannah Farrimond
Funded byESRC (Egenis)
Non-invasive prenatal diagnosis, or NIPD, is an area of emerging genetic technology which aims to replace current invasive procedures for collecting fetal genetic material, such as amniocentesis or chorionic villus sampling, with blood tests from the pregnant woman. These have the potential to offer earlier, easier and less risky genetic diagnosis (e.g. for Down syndrome). They are already used in some clinical contexts to determine sex (for sex-linked disorder) and Rhesus diagnosis. In the future, they could be used to identify a range of genetic aspects of the fetus, from susceptibility to disease, to common phenotypic traits. In short, the ease with which genetic material from the fetus can be obtained for diagnosis with these technologies may introduce new questions into prenatal testing.
However, it is not clear how members of the public view these emerging testing procedures, and what public preferences might be regarding how tests should be used in clinical practice. Are they viewed as a quicker and easier way to identify genetic disorders before birth, or the thin end of the wedge in a culture that desires 'perfect' babies?
The project aimed to investigate the thinking of ordinary people about these new technological advances so that their views and perspectives could be represented alongside those of the scientists and clinicians who are well-represented in NIPD policy.
• What is the range of public ‘viewpoints’ on or relevant to NIPD in the UK?
bull; What do ordinary people think will be the social and ethical implications of the novel aspects of NIPD: earlier, and less risky diagnosis, done using a blood test and potentially available commercially/direct-to-consumer?
• Is Q-methodology useful as a method with which to investigate relatively unknown emerging technologies?
This project used Q-methodology, which combines factor analysis with qualitative interpretation, to identify a set of common ‘viewpoints’ amongst a purposive sample of 71 men and women aged 18-60 in the UK. Participants sorted 70 statements relevant to the topic into a fixed pattern of agreement/disagreement and commented on them.
The Q-methodology study results indicated four stable ‘viewpoints’ of NIPD in the public sample: ‘discrimination against the disabled’; ‘positive clinical application'; ‘for severe disorders only’; and ‘personal choice’. There was a consensus of concern about NIPD being offered directly to consumers and participants argued for the need for health professionals to act as gatekeepers to and interpreters of these testing technologies.
a) Q-methodology is a useful method with which to investigate public attitudes to emerging technologies
b) The disability critique which views prenatal testing as discrimination against the disabled is represented here. It may be that this view is less marginalized than previously supposed.
c) Health professionals are seen as a ‘buffer’ against commercialization of NIPD/prenatal testing. Public policy needs to consider the public’s desire for clinical control of technologies.
Several papers (on the Q-methodology results, first responses of participants, and using Q-methodology to investigate emerging technologies) are in preparation or under review.
The results of this project have been disseminated at: European Meeting on Psychosocial Aspects of Genetics (EMPAG) 2010; International Society for Prenatal Diagnosis (Sweden, 2010); Medical Humanities (Truro, 2010); Concepts of Health and Illness (Bristol, 2010). A public engagement event, based on the Moral Maze, was held in Exeter in 2009; presentations at the Café Scientifique public events have also been made.
The study researchers have also made a successful Brocher Foundation bid for an International Symposium on the ethical, legal and social implications of non-invasive prenatal diagnosis. It will be held in Nov 2011. It is intended that an edited book will be developed from the Symposium.
More research into the public’s attitude towards regulating NIPD is planned, as is a comparative clinician/regulator interview study, comparing clinical and policy responses to NIPD across European countries/US.