(1) Who is doing the research?
Our names are Professor Isabel Karpin and Dr Karen O’Connell. We are both academics at the Faculty of Law, University of Technology, Sydney (UTS).
(2) What is this research about?
This research is about how law deals with, and should more appropriately deal with, the range of conditions that manifest in challenging behaviour. The research also questions the consequences of expanding definitions of ‘disability’ to include behaviours that in the past have been seen instead as variations in temperament or character. We focus on the way that the biological sciences, neuroscience and genetics in particular, are expanding the category of behaviours that are understood to be biological in origin, and thus fall within legal definitions of disability.
(3) What are the anticipated outcomes of the research?
By gathering perspectives from health practitioners: in the field of prenatal genetic testing, genetic counsellors, clinical geneticists, relevant PGD practitioners, preconception counsellors, paediatricians and others who work with behavioural disabilities; practitioners in the field of discrimination and experts in disability support and advocacy groups and key regulators we will explore the competing meanings of disability and how they are applied in practice. The research will allow us to consider the adequacy of, and to suggest improvements to, the available legal responses to disabilities that manifests as challenging behaviour. We will also assess new challenges to the law due to the expansion of the category of disability to include a broader range of challenging behaviours. We will examine in particular how effectively discrimination laws protect this expanded category of disability. We will also be surveying the views of people with direct experience of challenging behaviour either personally or as a relative or associate of someone who has a challenging behaviour.
(4) Why have I been asked?
You are able to give us information about how the law affects people with behavioural disabilities in Australia. Your knowledge and expertise are very important to this research project.
(5) If I say yes, what will my participation involve?
We will ask you to take part in an interview about your knowledge, experience and professional opinion of how the law deals with behavioural disabilities in Australia. We will ask you a number of questions. The interview will involve approximately 1 hour of your time.
(6) Will the interview be recorded?
We will be using an audio recording device to record the interview. We may also take written notes during the interview.
(7) Are there any risks? Is there any inconvenience?
Yes, there is some inconvenience, since you will need to allow about an hour to be interviewed. The interview will be confidential and there will be little risk to your privacy because the research has been carefully designed. We will not make any record of your name or identifying details other than the field in which you work for so there will be no public record that you gave this interview. Our notes and the recording of the interview will only be accessible to us, and any information which could possibly identify you will be removed from any publication.
(8) What if I want to be identified?
If you want to be personally identified in the data for advocacy purposes, for example if you belong to an advocacy group with a stance on this issue that you would like to make public, please indicate to us on the consent form that you wish not to be de-identified, and we will make special arrangements for you.
(9) Do I have to say yes? And can I withdraw at any time?
This interview is completely voluntary. You are under no obligation to consent. You can change your mind at any time and stop the interview without consequences. There will be no negative consequences if you decide not to do the interview, or if you decide to withdraw at any time.
(10) Will anyone else know the results?
The interviews are anonymous, therefore all participant information for the interviews will be de-identified (unless you request otherwise). No one will be able to identify who the interview participants are.
(11) What if you have any concerns about the research?
If you have concerns about the research that you think we can help you with, please feel free to contact us via telephone or email.