FAQs
Participation in the Eating Disorders Genetics Initiative
Anybody living in New Zealand aged 16 years and over, who has experienced anorexia nervosa (AN), bulimia nervosa (BN), binge-eating disorder (BED), or avoidant restrictive food intake disorder (ARFID). You do not need to have received a clinical diagnosis previously. If you have current or past (even long time past) experience that is ok.
Part of the survey questions will ask you about eating disorder related symptoms and by answering these we will identify which groups you might or might not fit in.
If you think you've had or are currently experiencing an eating disorder, please go through our survey - this will make a difference for the study and others living with these conditions.
Participating in this study could make a genuine contribution to improved understanding of the diagnosis, management and treatment of eating disorders.
Each eligible NZ participant will receive a NZ$35 gift card.
What is the process of the Eating Disorders Genetic Initiative study?
Study participation involves providing informed consent and completing an online survey which should take between 40-60 minutes.
- After completing the survey questions, eligible participants will be asked to donate a saliva sample.
- Researchers will send a saliva collection kit together with a pre-paid return envelope to eligible participants.
Providing a saliva sample
If you are having trouble producing a sample, please perform the following techniques:
- Gently massage your cheeks.
- Gently gnaw or chew on your tongue.
- Think about something sour like your favorite sour candy or lemons.
- Think about what you ate last or are going to eat next; imagine the smells, tastes and textures.
Please note that any volume is useful, even with bubbles.
If you are still unable to produce a sample, take a teaspoon of water, vigorously swish it around in your mouth and add that to the tube.
Even if your saliva sample is discoloured in the tube (e.g., lipstick or food scraps or blood), there is still plenty of your DNA in the tube for us to extract and use.
Confidentiality & Data storage
Study participation is strictly confidential.
All participant information provided will be maintained in accordance with the NZ Privacy Act 1993, and research information will be de-identified before being analysed, this includes sharing with out our international collaborators.
EDGI researchers (see About EDGI page for information about our team), we will extract DNA from saliva samples to identify specific genes associated with eating disorders, inclusive of anorexia nervosa, bulimia nervosa, binge-eating disorder, and avoidant/restrictive food intake disorder (ARFID).
If you want to know more about this process, please email us at edgi@otago.ac.nz - we would love to hear from you.
This research is not designed to provide any clinical results to those who participate. The study does not undertake individual analysis of each sample provided, but rather we will undertake an overall comparison of genetic markers on all samples provided.
We will provide updates about our research, our findings, and the subsequent work through this website and our social media platforms, like Facebook or Instagram. If you would like to see what happens and how your genetic data contributes to science and our knowledge about eating disorders, please follow us on social media or bookmark this website and visit us often.
If you have a personal interest in obtaining a genetic test on your DNA, we suggest you consider contacting a genetic testing entity which can provide such testing.
If you have any questions about this, please do not hesitate to email us at edgi@otago.ac.nz
There are two pathways for data and DNA sample storage in EDGI2 for New Zealanders. A full description of sample and data storage is given in the patient information sheet and consent form.
For participants who endorse Māori or Pasifika ancestry or origin, all data and DNA samples are stored in accordance with Indigenous-specific data and sample management processes. That means we will retain data and samples in Aotearoa-NZ to enable greater control and oversight in respect to data sovereignty and use of samples. We will hold the survey and genetic data at University of Otago, Christchurch. Oversight of requests for access to de-identified (your name and any personal identifying information is removed) data for Māori or Pasifika participants will be managed by the EDGI2-NZ team and/or an approved governing board which has Māori and Pacific representatives For approved research, de-identified data will be sent overseas to those researchers to be combined with the rest of the EDGI2 data.
For all other participants, de-identified (your name and any personal identifying information is removed) saliva samples will be sent to our colleagues at QIMR Berghofer Medical Research Institute (Brisbane, Australia). A small amount of DNA will be sent for genetic analysis (genotyping array) to a specialist laboratory contracted to undertake the analyses. The remainder of the other sample will be stored at the Rutgers University Cell and DNA Repository (RUCDR; USA; https://www.rucdr.org/), an approved tissue storage facility. The sample storage period will be for 10 years beyond the end of EDGI2, unless you consent to future unspecified research. Information you provide via the surveys will be de-identified and stored indefinitely in the National Institutes of Health (NIH) data repository called the database of Genotypes and Phenotypes (dbGaP), at the National Center for Biotechnology Information (NCBI) in Bethesda, Maryland, USA.
We acknowledge the taonga and the preciousness of people's DNA, and it is ok if you have questions or would like to talk about this topic. You can email us at edgi@otago.ac.nz or call/message us on 021 279 0882.
Our team member Dr Michaela Pettie (Ngāti Pūkenga, Ngāti Maru), is a fierce advocate for the safety and protection of participant data, and will answer any questions you have.
The analysis we conduct on your saliva sample will not tell us about your health status, ancestry or predict health outcomes. We are not looking for these particular genes in their analysis; rather we are searching for groups of common genes involved in eating disorders from a large group of people.
As part of the analysis, we may identify groups of people from different ancestral regions, like Oceania, the Pacific, African, East or Middle Asia, or Europe, and this would be to help us understand how the genes of eating disorders might be different depending on the broad region.
If you are worried about your specific health status or the health of your genes, we suggest that you contact your regular health provider who might be able to facilitate this process.
We certainly want to provide feedback to participants about the study, so we intend to provide all participants with periodic updates of the project's progress and results via email, also through this website and social media platforms, like Facebook and Instagram.
Furthermore, when we publish the results from the research, any genes identified in the development, course or treatment of eating disorders will be publicly available in a scientific journal.
If you are interested in receiving our updates, please follow our social media pages, bookmark this website and visit us from time to time, or send us an email at edgi@otago.ac.nz
Manaakitanga
Your participation helps all Māori be included and counted in a large study to help us understand the development of eating disorders. Participation further develops mātauranga Māori. The taonga (saliva sample and responses to the survey questions) gifted to us, will allow us to help our whānau, tamariki, and mokopuna.
Our EDGI team includes tangata whenua (Dr Michaela Pettie, Ngāti Pukenga), we also work with Ngāi Tahu, and we seek to collaborate directly with Māori researchers and iwi in the community. We believe that partnership with tangata whenua allows for a focus on Māori health priorities, rights, and interests.
After completing the online survey, we will post you a saliva sample kit with instructions.
The kit we send you will have a pre-labelled, pre-paid courier bag to send saliva sample to us at the University of Otago, Christchurch.
The taonga (saliva sample) shared with us will be registered electronically, and stored in a secure location. When we have gathered batches of saliva samples, we send these to our colleagues at QIMR Berghofer Medical Research Institute (Brisbane, Australia) for DNA extraction. The DNA sample is then either returned for storage in New Zealand (for Māori and Pacific participants), or sent to Rutgers University Cell and DNA Repository (RUCDR; USA; https://www.rucdr.org/), an approved tissue storage facility.
Your taonga (saliva sample and subsequent DNA extraction) will be stored in a secure approved specialist facility for 10 years beyond the end of the study, and this study is intended to end in 2024.
We will also hold onto your responses to the survey questions indefinitely, but we will ensure the data is de-identified.
Following a standard process, saliva samples that we or our colleagues are unable to use, will be disposed of in a way that prevents anyone from using it and avoids contamination with the taiao (environment).
If additional options regarding disposal are available to you, these will be included to select in the consent form.
We encourage you to consider the benefits and risks that this research may have for yourself, your whānau and for Māori. You may wish to speak with your whānau prior to consenting to participate in a research study. You are welcome to contact us, if you are further questions about tikanga, taonga, or the protocols used in this research.
LGBTQIA+ and Rainbow Community FAQs
We use the term “rainbow community” as an inclusive phrase to mean people of diverse sexualities and gender identities. Other terms that are commonly used to describe these identities include, LGBTQA+, lesbian, gay, bisexual, pansexual, asexual, transgender, non-binary, genderfluid, FtM, MtF, trans man, trans woman and agender. Other common terms used in Aotearoa that fall under the rainbow umbrella are takatāpui (Māori), fa'afafine (Samoa), fakaleiti (Tonga), akava’ine (Cook Islands) and vaka sa lewa lewa (Fiji).
Yes, we ask for your sex at birth (options are Male, Female, Intersex).
We also ask for you to identify your gender (options are Man, Woman, Non-binary or gender fluid, and other, which will give you the option to let us know how you identify your gender).
We think this is important information for understanding how the genetics of eating disorders impacts those of different identities. If you have any queries about this, please contact us and we will be happy to talk with you about it.
You can email us at edgi@otago.ac.nz or text/call on 021 279 0882 - we are happy to answer any questions you might have about this.
Yes! EDGI is gender-inclusive and welcomes participation from people of all gender identities, including nonbinary, transgender, genderfluid, agender, and other diverse identities within the rainbow community.
We recognise that eating disorders impact people of all genders differently, and research has historically underrepresented gender-diverse experiences. Our survey is designed to be affirming and inclusive, with questions that allow participants to accurately describe their gender identity and experiences.
However, if you feel we have gotten something wrong or something is out of date, please do not hesitate to let us know. We are mindful that word choice and phrasing can change over time and how we approach various aspects of gender also changes. As such, we aim to keep our survey up to date as possible.
Your participation helps improve research and future treatments for all people, ensuring that gender-diverse communities are represented in eating disorder genetics studies.
If you have any concerns about privacy or how your identity is represented in the study, please reach out - either via email edgi@otago.ac.nz or via 021 279 0882.
Additionally, our team member Dr Michaela Pettie, who is bi and within various rainbow communities is happy to respond to your questions.
Contribute to Research on Eating Disorders
Your Insights Matter
If you are interested in being a participant,
please use the link above to learn more about being in the study and to complete the survey.