Information Sheet for Parents
Gender mender bender or defender? Understanding diverse sex
development/ intersexuality in NZ
Thank you for showing an interest in this study. 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 and we thank you for
considering our request.
What is the aim of the project?
This study is being carried out by the University of Otago Wellington and is for a PhD. The
aim of this study is to investigate the factors and processes influencing contemporary clinical
decision making for children born with Diverse Sex Development (DSD) in New Zealand.
The study aims to explore and describe the decision making process in relation to gender
assignment and genital surgery and other treatments for children born with a DSD. We are
collecting information from three key groups: people with DSD; parents of children with
DSD; and health professionals.
The decision making process for children born with DSD is a very complex and there is much
ethical debate about what is the best approach to take when providing care and treatment for
children affected by these disorders.
This study appreciates that the decision making process is complicated and that all involved
are making decisions with the best of intentions for the children and their families. This study
aims to gain a greater understanding of the factors influencing the decision making process
from the perspectives of those directly involved.
Who can take part ?
We are seeking the participation of parents of children born with a DSD eg congenital
adrenal hyperplasia (CAH),Androgen insensitivity syndrome(AIS)-can be partial (PAIS) or
complete (CAIS),severe hypospadias, Klinefelter syndrome,5-alpha reductase deficiency
,gonadal dysgenesis ,46 ,XX/46,XY, Cloacal anomaly etc.
We are asking health care providers at services who are principally responsible for day to day
care of children born with a DSD to participate. They may be the one who has provided you
information about this study.
If you have a child who has a diagnosis of a DSD and is aged from new born to 14 years you
may be eligible to take part in this study.
What will participants be asked to do?
Should you agree to take part in this study, we will ask you to participate in a semi structured
interview with the researcher lasting approximately 60 minutes. This interview will focus on
your experiences of making decisions in relation to your child born with a DSD. You will be
asked about your treatment relationships with your primary health professional or team. We
will ask your permission to contact your doctor so we can be accurate about diagnosis and the
test results.
This will take place at a time and venue that is convenient to you.
Additionally your health care provider may ask you to consent to a consultation with them
being audio recorded to be used in the study. Should you consent, the researcher Denise
Steers will contact you before and answer any questions you may have .Ideally the recording
of the consultation would take place before the researcher interviews you .This would give an
opportunity for you to reflect on the consultation process.
Can Participants change their minds and withdraw from the project?
Your participation is completely voluntarily. You may withdraw from participation in the
project at any time and without any disadvantage to yourself of any kind. Data that has been
collected already and used in developing further questions and direction for the research will
continue to be used. All identifying information will be removed.
What data or information will be collected and what use will be made of it?
Interview data will be available to the researcher Denise Steers and the principal supervisor,
Professor Sunny Collings only.
The results of the project may be published but every attempt will be made to preserve you
and your child’s anonymity. This will be achieved by use of codes and removal of all
personal identifiers e.g. names, birthdates etc. You are most welcome to request a copy of the
results of the study should you wish. There is a yes or no section on the consent form that
allows you to make your request known.
The data collected will be securely stored in such a way that only the researcher, Denise
Steers, will be able to gain access to it. At the end of the project any personal information e.g.
participant contact details 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
kept in secure storage for ten years, after which it will be destroyed. Interview data will not
be shared with your Doctor.
What are the studies benefits and risks?
Benefits
 Children born with a DSD are a vulnerable group in society and more research is
needed to support parents.
 Children born with a DSD are a vulnerable group in society and more research is
needed to support the development of best practice for health professionals working in
the field.
 The diagnosis of DSD and treatment raises a variety of complex ethical issues and
more research is needed to inform the ongoing revision or development of guidelines
and policy.
 Given the complexity and ethical issues for both parents and health professionals the
study will provide an opportunity for self reflection.
 The study will contribute to the limited body of research in New Zealand.
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It will take in the perspectives of all those involved in the decision making process i.e.
parents, health professionals and young people who are born with a DSD.
Identification of what working is well and what could be improved in the provision of
care for children born with a DSD.
Recommendations for the development of resources for health professionals, parents
and people born with DSD.
Risks
 This study covers a sensitive topic with a number of complex and ethical issues and
you may feel uncomfortable when reflecting on your experiences.
 Confidentiality –you may have concerns that what you say in confidence may be at
risk e.g. if you had a difference of opinion with a health professional. All data
collected will be kept in strict confidence and stored on a password locked computer
and only accessed by one researcher, Denise Steers and the principal supervisor
professor Sunny Collings. Interview data will not be shared with your Doctor.
What if Participants have any Questions?
If you have any questions about the study, either now or in the future, please feel free to
contact Denise Steers [email protected] ,phone 04 806 1495 or Professor Sunny
Collings [email protected] ,phone 04 918 5600
Information and Support
If you have any questions or concerns about your rights as a participant in this research study,
you can contact an independent health and disability advocate. This is a free service provided
under the Health and Disability Commissioner Act.
Telephone, NZ wide: 0800 555 050
Free Fax, NZ wide: 0800 2787 7678 (0800 2 SUPPORT)
Email: [email protected]
Intersex Trust Aotearoa New Zealand (ITANZ)
www.ianz.org.nz 04 381 2221
Congenital Adrenal Hyperplasia New Zealand Trust (CAHNZ)
www.cah.org.nz 03 3584 506
This study has been approved by the University of Otago Human Ethics Committee. If you
have any concerns about the ethical conduct of the research you may contact the Committee
through the Human Ethics Committee Administrator (ph 03 479 8256). Any issues you raise
will be treated in confidence and investigated and you will be informed of the outcome.