Invitation to participate in an online survey about preventing severe recessive diseases through preconception carrier screening in Western Australia


This is a feasibility study about preventing severe recessive diseases in the population through a preconception carrier screening program in Western Australia (Ethics number: RA/4/1/8847). The questionnaire is part of the Australian Genomic Health Alliance (AGHA) preconception carrier screening flagship program being drafted currently.

Purpose
The purpose of this questionnaire is to find out what health professionals think about having a preconception carrier-screening program in Western Australia. This research seeks to explore different perceptions about the program and to examine the attitudes surrounding preconception carrier screening in the context of reducing and preventing severe recessive genetic diseases within the community.

Contacts
The Chief Investigator is Professor Nigel Laing (NH&MRC Principal Research Fellow, Centre for Medical Research, University of Western Australia).

Please direct questions to:
Professor Nigel Laing (Chief Investigator)
Email: nigel.laing@uwa.edu.au
Tel: +61-(0)8-6151-0741
Mobile: 0407-982-141

Dr Gina Ravenscroft (Co-Investigator)
Email: gina.ravenscroft@uwa.edu.au
Tel: +61-(0)8-6151-0740
Mobile: 0414-232-267

Participant experience
If you agree to take part in this project, you will be asked to complete an online survey, which will take approximately 10 minutes of your time. The survey will ask about your knowledge, perception and attitude as well as behaviour towards preconception carrier screening in Western Australia. The online survey link is available at: 

http://www.surveygizmo.com/s3/3225030/health-professionals

Risks and benefits
There are no foreseeable risks involved in this project. Your information will help in steering future research, which may benefit the community.

Participation and consent
Participation in the review is voluntary, and you may discontinue at any time without penalty. The questionnaire is strictly confidential and anonymous. In order to ensure anonymity, please note that you will not be able to save your responses and return to the survey at a later stage. Please review your responses before clicking ‘next’ or ‘submit’ to send your completed survey.

Consent will be implied by completion and submission of the survey. Consent is for the use of your results in this project. A consent form will not be required for online surveys as completion of the survey will indicate consent.

Confidentiality and results
Your responses to this survey will be completely anonymous, and no member of the research team will know who has participated. The answers from all people surveyed will be gathered together and no individual answers will be published or passed on. Data from incomplete surveys will be deleted. A summary of findings will be available by request from the researcher after analysis of the data. Non-identifiable results may be presented at external or internal conferences or meetings, or by publication. Non-identifiable data may be made available for use by other researchers undertaking similar projects in a different context.

Complaints / Concerns
If you have any complaints about the way this research project is being conducted you can raise them with the Chief Investigator (Professor Nigel Laing, the University of Western Australia. Telephone: +61-(0)8-6151-0741; email: nigel.laing@uwa.edu.au). If you prefer an independent person, contact the Human Ethics Officer of the Human Research Ethics Committee at the University: (Mr Peter Carl Miller, the University of Western Australia. Telephone +61 8 6488 3703; email: peter.miller@uwa.edu.au).

The researchers and the University of Western Australia thank you for your participation in this study.

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