Nothing about us without us. This is something you would have heard on Ramp Up before. But, Katharine Annear asks, what does this mean when it comes to research that could be designed to engineer a world without us?

Last week there was news of some research that could lead to the early detection of autism through gene mapping. The announcement took place at a large conference on autism in Adelaide. The conference was designed to bring together the autism community including those on the autism spectrum. I think announcing this breakthrough at an autism conference, in the presence of Autistics, was a controversial choice and brings up a whole range of ethical questions for the wider community.

Some questions that come to my mind are: Do we want a world without certain types of people? Would we be better off as a society if certain types of people weren't born or could be altered in the very early stages of life through gene therapy? Who decides the research agenda?

Depending on who you are and where you sit within society you are going to have a different opinion on this. Some people feel really justified in saying that those with severe disability that affects their quality of life should not be given the opportunity to live in the first place. Others believe that all life is sacred and that every human being has a right to life despite their genetic or mental and physical qualities.

So who sets these research agendas and who decides that the majority of money spent on autism research should go to genetics and causation and ultimately the search for a cure? Generally speaking, when it comes to research there is usually a committee or board that decides upon the allocation of funding based on a number of factors including the possible impact on the community of interest, value for money and ethics.

In Australia, the new Cooperative Research Centre for Living with Autism Spectrum Disorders (Autism CRC) will make many of these decisions. However, the Board of this establishment does not include the voice of the very people the research pertains to and affects. So in this case, the agenda could well be creating a world without us because we are not there to have our voices heard.

This is not just an issue for the autism world and for one condition. This is an issue of the 21st century as technology takes leaps and bounds without conversations regarding the ethics of the technology and its implications. We as a community of disabled people are responsible for starting these conversations as they will inevitably be about us. We must also demand that we are included in these conversations when they occur within different hierarchies and bureaucracies that represent society's mechanisms of change.

We need to get down and dirty about where the money goes, what is being researched, why it is being researched and what it means in terms of the capacity to eliminate certain variants of humanity. Yes, it is about eugenics, but we need to start having a contemporary conversation about eugenics. Back when eugenics was popularised 60 to 100 years ago, people wouldn't have dreamt of including their sub-normal subjects in conversations about attempts to eradicate them.

Eugenicists from the past believed in a society where the variation in humanity was brought under control, and that ultimately this was a good thing. Contemporary researchers also believe they are doing good. They believe they can eliminate certain kinds of suffering and certain kinds of disabling impairment. But we have to keep asking the question: Does this mean we are willing to live in a world without certain kinds of people?

I believe we must demand that an Autistic person be appointed to the Board that governs the Autism CRC. And that each and every similar piece of social machinery focused on investigating a particular identifiable group of impairments must consider appointing a representative with that condition or impairment to their boards and committees. Furthermore, when the government has occasion to fund such consortia, I believe they should not grand funding for any research without consulting in a meaningful way the voice of the community of interest.

We need research on how disabled people can thrive and be supported to live amazing lives and to contribute meaningfully to society. I believe we must demand that in the research world there should also be nothing about us without us.

Katharine Annear is an Autistic woman who is committed to establishing high quality dynamic and responsive systems for people with disability. She is Chair of the Autistic Self Advocacy Network of Australia and New Zealand. Holding a Master of Disability Studies, Katharine works in the field and lectures part-time at Flinders University.