The mechanisms underlying the human fetal-to-adult -globin gene switch remain to be determined. While there is substantial experimental evidence to suggest that promoter DNA methylation is involved in this process, most data come from studies in nonhuman systems. We have evaluated human ␥-and -globin promoter methylation in primary human fetal liver (
Accessible summary• There is now a statement from the United Nations that sets out rights for disabled people. One of their rights is to participate in their communities. • One way of participating is when people with intellectual disabilities do research on issues that are of concern to them. This is called inclusive research. • No Longer Researching About Us Without Us was a national project to support people with intellectual disabilities and support workers to do inclusive research. It went on for 18 months. • This paper tells about two of the projects that were done by getting people in some services together to talk about what they wanted to do. One of the projects was about a coffee shop and its place in a small town. The second was about how to stop bullying. • We found that doing the projects led some people with intellectual disabilities to become stronger self advocates. We also found that the projects raised important issues about their lives that other people had not thought of and that people began to work together in groups to do their own research and to make change happen.
SummaryNo Longer Researching About Us Without Us was an innovative national project which aimed to develop inclusive research with people with intellectual disabilities in the Republic of Ireland. This paper is my personal reflection as co-ordinator of this project on work undertaken by and with people with intellectual disabilities during its 18-month life. Using examples from the project, this paper explores links between the inclusive research aspect of project and the rights of people with intellectual disabilities to participate in their communities. As a result of the project we found that people with intellectual disabilities began to initiate and take action on some issues that were important to them and that this resulted in the development of longer term changes in their role within one service in Ireland.
In spite of changes in the way people with learning disabilities are perceived, issues of sexuality and personal relationships remain particularly problematic for them. Living Safer Sexual Lives1 was a three‐year Australian action research project which sought to address how people with learning disabilities view these issues. During the first stage of the project, 25 people with learning disabilities told their life stories, with a focus on sexuality and human relationships, to experienced qualitative researchers. In the second stage of the project, these stories were used to provide people with learning disabilities, families and service providers with workshops and resources designed to help people with learning disabilities to live safer sexual lives.
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