Difference and choice: exploring prenatal testing and the use of genetic information with people with learning difficulties

Abstract

Summary Developments in genetics have huge implications for disabled people (including people with learning difficulties) and their families. On the positive side, there is the potential for greater understanding of – and ultimately, perhaps, treatments for – serious conditions like cystic fibrosis and sickle cell anaemia, but there are also concerns about the negative implications, including the potential for discrimination in insurance, employment and even life itself. Yet, the voices of those most affected by these developments – people with learning difficulties and their families, and disabled people generally – have been conspicuously absent from these debates. The present article describes two workshops that explained the use of prenatal testing and genetic information to inform choices in pregnancy to people with learning difficulties, and then explored the issues with them and the contribution subsequently made by these people to a national conference on this subject. Methods for explaining the complex issues involved in an accessible way and exploring them in a supportive environment are described along with the views of people with learning difficulties on these issues.