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Egenis · News

Volunteers needed for new study

09.06.2009

Introduction

Participants are being sought for a study on attitudes towards new pre-natal tests.

Story

Advances in genetic technologies could mean more readily available tests for genetic conditions quite early on in a pregnancy. The attitudes of scientists to such tests are quite well-documented, but what do members of the public think?

A new Egenis study, ‘Is easier better? Public attitudes towards non-invasive pre-natal testing’, aims to find out, and is looking for volunteers to take part.

“It is becoming possible to test for a limited variety of genetic conditions such as Down’s syndrome through normal blood testing,” explains senior researcher Dr Susan Kelly. “This avoids the need for risky or complex procedures such as amniocentesis. Testing would take place earlier in the pregnancy and be diagnostic, giving a definite yes or no. Although current work is focusing on replacing existing tests, it opens up the possibility of testing for a much wider range of genetic conditions, risks and traits in the future.

“But while the views of the scientists who are developing these technologies and the health professionals who will use them have been widely represented, it is not clear how members of the public understand these emerging testing procedures, and we certainly don’t know 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 project will investigate public perceptions of non-invasive pre-natal testing, aiming to access the thinking of ordinary people about these new technological advances so that their views and perspectives are represented alongside those of the scientists developing the technology and the clinicians who will be called upon to implement the tests.

“We hope that our research will tap the range of distinct 'viewpoints' on non-invasive pre-natal testing, with the intention of feeding these views back to the policy-makers, scientists and clinicians engaged in making decisions about these emergent technologies,” says research fellow Dr Hannah Farrimond. “What we need now is for volunteers between the ages of 18-60 to come forward to take part in the study so that we can start surveying attitudes.”

The study, which takes about an hour to complete, asks participants 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. Participants will be given a £15 Boots or WH Smith voucher as a token of appreciation.

"We are particularly interested in encouraging men to participate," said Dr Farrimond. "All too often, men’s views on topics such as pre-natal testing are overlooked. Of course we want women to take part as well, but it would be great if they could pass the invitation on to their partners or male colleagues too."

Anyone interested in taking part should email the project at newtests@exeter.ac.uk

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