IntroductionA new research project is underway to investigate public attitudes towards pre-natal testing
Recent advances in genetic technologies mean that it is becoming possible to screen for a limited variety of genetic conditions through normal blood testing, such as fetal sex for sex-dependent disorder, blood type, and chromosomal abnormalities such as Down’s and Edward syndrome. This avoids the need for risky or complex procedures such as amniocentesis. More expansive pre-natal tests, for example, testing for traits such as personality, intelligence or mental illness, are on the horizon.
However, it is not clear how members of the public understand these emerging testing procedures, and what their preferences are 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 views of the scientists who are developing these technologies and the health professionals who will use them have been widely represented in the media. There is also an expanding market of business interested in supplying pre-natal genetic testing. But what do members of the public think?
The new project at Egenis aims to find out. ‘Is easier always better?: What do the public think about non-invasive pre-natal testing?’ will investigate public perceptions of non-invasive pre-natal testing. This project aims to access the thinking of ordinary people about these new technological advances so that their views and perspectives are also represented.
This project uses Q-methodology, a type of factor analysis. Approximately 100 participants aged between 21-60 will be asked to sort a set of statements about non-invasive pre-natal testing to reflect their views. They will also be asked to comment on the statements, drawing on their personal experiences and beliefs about pre-natal testing in general. This process will tap the range of distinct 'viewpoints' on non-invasive pre-natal testing. The aim is to feed these views back to the policy-makers, scientists and clinicians currently engaged in making decisions about these emergent technologies.
The researchers leading this project at Egenis are Dr Hannah Farrimond, who specializes in family history approaches and genetic testing in common complex diseases (e.g. heart disease and diabetes) and Dr Susan Kelly, whose expertise is in research with families with children with genetic conditions.