Charities Commission Registration CC22512

Opportunity to participate in a research project.

NZORD has agreed to help a researcher from Otago University make contact with families for a research project. Dr Ruth Fitzgerald is conducting a study on:

• How people have made use of the group NZORD (or their local support group) in their ethical decision making around the challenges of caring for their children who live with rare genetic diseases.
• Some of the sorts of social and ethical dilemmas which arise for people who have a child with a rare genetic disease.
• How people think and feel about the value of medical technologies (such as amniocentesis) in managing some of these challenges and new types of medical research (such as PGD, gene therapies and other experimental possibilities).

NZORD was consulted on the scope of the project and is using its contact list to encourage participation, to ensure more quality information is available about these important issues. Interviews are sought with New Zealand parents or prospective parents, of children with rare genetic diseases.

The following information includes details of the project, information about the ethical approval, and privacy matters. Brief biographical details about Dr Fitzgerald are also included, along with contact details. Please contact Dr Fitzgerald directly if you would like to participate.

31st October 2004

Understanding ethical decision making for parents (or potential parents) of children with rare genetic diseases.

INFORMATION  SHEET  FOR PARTICIPANTS
Thank you for showing an interest in this project.  Please read this information sheet carefully before deciding whether or not to participate.  If you decide to participate we thank you.  If you decide not to take part there will be no disadvantage to you of any kind and we thank you for considering our request. 

What is the Aim of the Project?
This is a qualitative research project in which data will be gathered via interviews. Two of my students (Tracey Norrish and Willow McKay) will be carrying out interviews with 30 couples/single parents who belong to support groups which are registered with the umbrella group NZORD (New Zealand Organisation for Rare Diseases) via telephone or face to face interviews (depending on their location). The aim of the research is to discover:
• How people have made use of the group NZORD (or their local support group) in their ethical decision making around the challenges of caring for their children who live with rare genetic diseases.
• Some of the sorts of social and ethical dilemmas which arise for people who have a child with a rare genetic disease
• How people think and feel about the value of medical technologies (such as amniocentesis) in managing some of these challenges and new types of medical research (such as PGD, gene therapies and other experimental possibilities).

What Type of Participants  are being sought?
I would like either myself or my students to speak to people who are members of support groups which are affiliated with the umbrella group NZORD (or who are known to the organiser of NZORD) and who have a child with a serious genetic disorder.

What will Participants be Asked to Do?
Should you agree to take part in this project, you will be asked to take part in a 30 – 50 minute interview.  This interview will be either face to face or by telephone (depending on where you live).

Can Participants Change their Mind and Withdraw from the Project?
I do not expect that this interview will cause you any harm or discomfort however please know that if you are uncomfortable at any time during the interview you may stop participating in the project without any disadvantage to yourself. Indeed you can withdraw from this project at any point whatsoever without any disadvantage to yourself.

What Data or Information will be Collected and What Use will be Made of it?
The data will be collected in an interview format and this interview will be open ended around the topics previously described in the aims of the research project.

This project involves an open-questioning technique where the precise nature of the questions which will be asked have not been determined in advance, but will depend on the way in which the interview develops.  Consequently, although the University of Otago Human Ethics Committee is aware of the general areas to be explored in the interview, the Committee has not been able to review the precise questions to be used.

In the event that the line of questioning does develop in such a way that you feel hesitant or uncomfortable you are reminded of your right to decline to answer any particular question(s) and also that you may withdraw from the project at any stage without any disadvantage to yourself of any kind.

The data is being collected for research carried out by me in my role as a medical anthropologist at the University of Otago.  The interviews will be seen only by myself, the student who carried out the interview with you and the typist (Ms Rachael Brinsdon) who carries out the transcription of the taped material. Subsequently, the results of the project may be published and will be available in the library but every attempt will be made to preserve your anonymity.

You are most welcome to request a copy of the results of the project should you wish.

The data collected will be securely stored in such a way that only those mentioned above will be able to gain access to it.  At the end of the project any personal information will be destroyed immediately except that, as required by the University's research policy, any raw data on which the results of the project depend will be retained in secure storage for five years, after which it will be destroyed.

What if Participants have any Questions?
If you have any questions about our project, either now or in the future, please feel free to contact:-
Dr Ruth Fitzgerald     Department of Anthropology
University Telephone Number  03 479 8169  

This project has been reviewed and approved by the University of Otago Human Ethics Committee
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CONSENT  FORM  FOR  PARTICIPANTS
I have read the Information Sheet concerning this project and understand what it is about.  All my questions have been answered to my satisfaction.  I understand that I am free to request further information at any stage.
I know that:-
1. my participation in the project is entirely voluntary;
2. I am free to withdraw from the project at any time without any disadvantage;
3. the data [audio-tapes] will be destroyed at the conclusion of the project but any raw data on which the results of the project depend will be retained in secure storage for five years, after which it will be destroyed;
4. this project involves an open-questioning technique where the precise nature of the questions which will be asked have not been determined in advance, but will depend on the way in which the interview develops and that in the event that the line of questioning develops in such a way that I feel hesitant or uncomfortable I may decline to answer any particular question(s) and/or may withdraw from the project without any disadvantage of any kind.
5 the results of the project may be published and will be available in the library but every attempt will be made to preserve my anonymity.

I agree to take part in this project.

............................................................................. (Signature of participant) 

 ...............................    (Date)

This project has been reviewed and approved by the University of Otago Human Ethics Committee
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Brief Biographical details

Ruth Fitzgerald is a medical anthropologist who obtained her PhD in 1999 with a thesis that investigated the effect of the New Zealand Health Reforms upon the meaning of care in New Zealand hospitals.
Since then she has continued to research on the understanding of care for health care workers, having just completed a study of Rural Nurse Specialists in southern New Zealand.  In addition she has begun studying broadly around the social meaning of genetic testing in New Zealand carried out mainly through fieldwork by her masters students, she has studied cytogeneticists understandings of genetic testing and also women undergoing amniocentesis.  In the third and final stage of this project she is now studying with families who have a child with a serious genetic disorder to ascertain their understandings of the role of genetic testing in their lives.

Ruth’s Otago University webpage address is www.otago.ac.nz/anthropology/anth/people/fitzgerald.html
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Dr Ruth Fitzgerald
Lecturer
Anthropology Department
School of Social Sciences
University of Otago
PO Box 56
Dunedin
New Zealand
tel: 64-3-479 8169
fax: 64-3-479 9095
Email: ruth.fitzgerald@otago.ac.nz