Research Project: Participants Needed!
Title: The meaning of Serious Disability in Prenatal and Neonatal Health Care
What is the study about?
The project examines current laws and policies which deal with medical technologies used in prenatal and neonatal healthcare.
We would like to hear from you about your experiences with the use of:
- Preimplantation
genetic diagnosis (PGD) to prevent the transmission of genetic conditions - Prenatal testing to diagnose fetal abnormalities: and/or
- The technological environment in the neonatal intensive care unit.
We would also like to hear from the parents of children with conditions that may be considered disabling in order to gauge their views on these technologies.
If you have relevant personal experience and would be willing to share your thoughts with us, we would appreciate you completing our anonymous online survey. Your thoughts and
opinions are valuable and will inform our analysis of law and policy in the
areas of parental and neonatal health care.
Who is carrying out the study?
The study is being conducted by Dr Kristin Savell at the University of Sydney and Professor Isabel Karpin at the University of Technology Sydney supported by an Australian research Council Discovery grant.
Access the study
You need only fill out the survey that relates to your experience, but feel free to complete more than one of the surveys if you have experience in more than one of the above mentioned areas, for example, you may have experience with prenatal testing and also be the parent of a child with a disability, in which case you could complete both
surveys.
The surveys can be accessed online via the following webpage: http://seriousdisabilityproject.blogspot.com
Each of the surveys should take about 25 minutes to complete.
Please note the surveys will be open for a limited time only and are available to participants who are Australian residents and aged 18 years or older.
Further Information
If you have any further questions about the survey or require additional information, please email the researchers at seriousdisabilityproject@gmail.com
