Participant information sheet
Donor Identity in Aotearoa New Zealand (DIANZ) Survey of parents with donor-conceived children born after the HART Act donor registry
You are invited to take part in an anonymous survey of parents of donor-conceived children born after the HART Act donor registry was established in 2005. It is entirely your decision whether or not you take part. If you don’t want to take part, you do not have to provide a reason.
This Participant Information Sheet will help you decide if you’d like to take part. It sets out who we are, why we are doing the study, what your participation would involve, what the benefits and risks might be, and what would happen after the study ends. You do not have to decide today whether or not you will participate in this survey. Before you decide you may want to talk about the study with other people, such as family, whānau, friends, or healthcare providers.
Who we are:
Professor Cindy Farquhar is Medical Director of Fertility Plus and a Professor in the Department of Obstetrics and Gynaecology Auckland Medical School.
Associate Professor Sonja Goedeke is a clinical psychologist and Associate Professor in the Department of Psychology and Neuroscience at Auckland University of Technology (AUT).
Dr Karyn Anderson is a medical doctor and completed training in public health. She is currently a research fellow at the University of Auckland.
Are you eligible to participate in the survey?
If you have had a child conceived through donor-conception (including egg, sperm, or embryo donation) born between 2006-2016, we invite you to participate in our survey.
If you are in a relationship, you and your partner may complete the survey jointly, or one parent may choose to complete the survey. If you have separated from your child’s legal parent since their birth, and/or you are not sure if your partner is completing the survey, you are also welcome to complete the survey.
How long will it take?
Approximately 10 to 20 minutes of your time. The length of the survey varies substantially based on your answers and the need for additional follow-up questions.
What is the reason for this survey?
In 2004 the Human Assisted Reproductive Technology Act was passed that enabled people conceived from donor egg, sperm and embryo to be able to find out who the donor is when they turn 18. The first children born under this new law turn 18 in 2024. This study is a survey of their parents and aims to ask parents if and what they have discussed with their child/children about their donor conception. This information will help fertility clinics evaluate their counselling and how they may improve what they do as clinics providing donor conception. Finding out what has influenced parents to tell or not tell their child about their donor conception might help us make changes to the law and clinic policies and practice guidelines to make this process better for whānau in the future.
Consent processes
The link to the online survey can be found in your invitation to take part in the study. Key points from this participant information sheet will be highlighted to you on the survey introduction page. By clicking the button to start the survey you are providing your consent to take part. You will be asked again for your consent prior to submitting your competed survey. If you stop the survey part way through without submitting your completed survey your responses will not be included in the study.
Voluntary participation and withdrawal from the study
Participation in this survey is completely voluntary. Whether or not you participate will not be known to any parties other than yourself. You are free to decline to participate or withdraw at any time by closing the online survey browser. You do not need to provide a reason if you withdraw. If you choose not to participate, or you withdraw from the study, this will not affect the care you receive might be receiving from your fertility clinic.
The questions in the survey relate to the sharing of information about the donor between you and your child. We will also ask some questions about your age, gender, relationship status, sexual orientation, family type, ethnicity, religious affiliation and number of children. If you are uncomfortable answering a question you may omit that question and you are free to withdraw from the survey at any time by closing the survey page.
Please note that you cannot withdraw from the study after submitting your completed survey as due to the anonymous nature of the survey we will not know which responses are yours.
Benefits and risks of taking part
Participating in the study may be a positive experience for many as it provides an opportunity to share your experiences and potentially contribute to positive changes.
We also acknowledge that for some, participating in the survey or receiving the invitation may trigger some distress. If you experience any concerns or distress, please contact the counsellors at the fertility clinic where you received treatment or seek help through your general practitioner. All the fertility clinics have agreed to take part in this survey and will provide counselling support to parents if needed.
What will happen to my information?
This survey is anonymous. No internet addresses or other identifying information will be gathered. Data obtained from this survey may be used for journal publications, conference presentations, or other academic publications.
Can I find out the results of the study?
You have the right to be informed about the results of the survey. You will be provided with the opportunity to submit your email address in order to receive a copy of the results, and this information will not be linked with your answers on the survey. We plan to discuss the results of the survey at a research and advocacy hui in 2024 with donor conceived people, their whānau, and other interested parties. If you would like to receive the results, in addition to providing you with a summary we also warmly invite you to attend this hui to share your views and hear the views of others. The results presented will be anonymised and attendees will not know you took part.
Who is funding the study?
This survey has received funding from the A+ Trust. The Auckland DHB Charitable Trust, commonly known as the A+ Trust, provides financial support to Auckland health researchers to undertake high quality healthcare research.
Who has approved the study?
This research project has been approved by the Auckland Health Research Ethics Committee (AHREC) on 14/09/2023 for three years. Approval number AH26445.
This research project has been approved by the AUT Ethics Committee on 21/09/2023. Approval number AUTEC 23/290.
Who do I contact for more information or if I have concerns?
If you have any questions or complaints about the study, please contact us.
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Professor Cynthia Farquhar, Principal Investigator,
Department of Obstetrics and Gynaecology
Faculty of Medical and Health Sciences
University of Auckland
Private Bag 92019
Auckland 1023
09 923 9493
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Dr Karyn Anderson, Research Fellow & study coordinator,
Department of Obstetrics and Gynaecology
Faculty of Medical and Health Sciences
University of Auckland
Private Bag 92019
Auckland 1023
09 923 2908
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For concerns of an ethical nature, you can contact the Chair of the Auckland Health Research Ethics Committee at ahrec@auckland.ac.nz or at 373 7599 ext 83711, or write to the Chair of the Auckland Health Research Ethics Committee, The University of Auckland, Private Bag 92019, Auckland 1142.
If you require Māori cultural support you may contact the administrator for He Kamaka Waiora (Māori Health Team) on: Phone: 09 486 8324 ext 2324. You may also contact the Auckland and Waitematā District Health Boards Māori Research Committee or Māori Research Advisor by phoning 09 486 8920 ext 3204.
If you require counselling support you may contact the fertility clinic where you received treatment, or your general practitioner. If you do not have a general practitioner or are unable to contact fertility clinic services Healthline (0800 611 116) can be used for advice on other available counselling services in your area.
Thank you for your interest! Noho ora mai!