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Your rights at the doctor

Your Rights at the Doctor

This fact sheet is intended for people with intersex variations/innate variations of sex characteristics. It may also be helpful for family members. This resource is not a substitute for independent legal or professional advice.

People with innate variations of sex characteristics (also known as intersex variations) face unique challenges in medical settings. Traditionally, people with intersex variations have often been treated as a medical curiosity. Skewed power dynamics in clinical settings makes people with variations vulnerable to associated traumas. Going to see a doctor after having been mistreated by the medical system can be a confronting and distressing experience. Those who have had more positive experiences can still safeguard themselves with a baseline awareness of their rights in a medical setting.

You have the right to receive safe, respectful and high-quality health care.

This document is intended to help you assert your rights when accessing healthcare. It covers what you should reasonably expect from a healthcare provider. It suggests ways in which your expectations may be challenged or subverted and ways to better safeguard and inform yourself, as well as what to do if your rights are violated. 

Having a more robust understanding of your rights in a medical setting you are more likely to produce a more beneficial outcome for yourself, as well as changing the quality of care that others experience.

You have the right to bodily integrity and autonomy

You have the right to make your own decisions about your own body, to the maximum extent possible. 

Things to consider:

  • You have the right to know what has happened to your body and why it happened
  • You have the right to know the evidence and rationales for a treatment and its alternatives
  • You have the right to say no
  • You have the right to delay treatment until you better understand it or can be better informed

Many people with innate variations of sex characteristics have reported experiences of medical treatments based on inadequate evidence, or based on social and cultural ideas about bodily appearance and function, or gender stereotypes. These include ideas that all young girls need a vagina since they will need and want one eventually anyway, or that a boy needs to be able to stand to urinate. Treatments based on these ideas violate your right to bodily integrity and autonomy if they are performed without your free and fully informed consent.

Understanding your right to bodily integrity and autonomy means that you can advocate for the recognition and respect of your rights. You have the power to make informed decisions about your own body and life.

You have the right to respect

You have the right to be treated with respect at all times. Fostering open communication with healthcare providers with regards to the words used and your preferences is important in ensuring a safe medical environment.

People with variations of sex characteristics have a broad range of identities, and may use a lot of different language to describe themselves. Many misconceptions about intersex people lead to situations where doctors may default to particular ideas or terminology that don’t respect how a person understands themselves. There might be assumptions made about your identity, or gender and gendered language on the basis of particular sex characteristics that you find offensive. 

 

Some people might feel more comfortable with diagnostic language, while others are more comfortable with less specific language. Some people understand themselves as a male or female living with an intersex variation, others might gravitate towards other understandings of their gender and identity. 

Whatever living with a variation means to you, whatever language you choose to use for yourself, it should be respected by medical staff in all contexts.

Intake forms can be the most straightforward and unobtrusive way to indicate your language preferences, as long as there is space to record your choices accurately. Let your doctor know about your preferences, and make sure they are open to correction if they get it wrong. You can also prepare for a session in advance by completing an appointment card that will help easily share this information with a new doctor.

Things to consider:

  • How do you prefer talking about your variation of sex characteristics? Are you comfortable talking about your individual diagnosis? Do you prefer talking about intersex variations or differences of sex development (DSD)? Is there any language you find upsetting? Have you communicated this?
  • Have intake forms given you the opportunity to assert your identity independent of your intersex variation?
  • Are staff respectful of that identity? Including your name, pronouns, and gendered language? 
  • Are staff members responsive to being corrected, or are they making deliberate and consistent mistakes?
  • How can you access the process information for making a complaint if needed?

Respect for an individual’s identity and language preferences is foundational to a compassionate healthcare experience. By fostering open communication with medical service providers, you give them the opportunity to refine their service delivery and treat you with respect and dignity. 

You have the right to privacy

You have the right to privacy, especially when it comes to your intersex variation, ensuring that your personal health information and identity are safeguarded from unwarranted disclosure.

The rarity of some innate variations of sex characteristics can draw a lot of curiosity, especially if a doctor hasn’t treated a patient with your variation before. You might also find yourself in situations where people seem to know about your variation even though you haven’t given permission for them to know. Sometimes a doctor may need to refer you to other specialists or may themselves need to seek guidance from other doctors. Every single time you make a choice to disclose your variation to a healthcare provider, you should reasonably expect that information to be kept confidential except where you have given permission to disclose to someone else. Health care practitioners may only disclose confidential information without consent in limited circumstances such as emergencies.

At times, doctors may push for more testing or examinations than is necessary, in order to satiate their own curiosity. They might wish to use you as a teaching opportunity for medical students or other doctors. They may wish to write about your experiences of having a variation of sex characteristics and may probe for information you don’t wish to disclose. You should never be put in a situation where you feel like you need to do anything for your doctor that you feel uncomfortable with. Doctors must make the care of their patients their first concern. If a doctor pushes you for more testing or examinations than is necessary, or if treatment is withheld from you as a result of refusing to give up your right to privacy, you may wish to make a complaint.

Things to consider:

  • Who is in the room with you besides you and your treating physician? Do they need to be there? Was your permission sought out first?
  • If someone is aware of your variation and you didn’t tell them, where did they get that information from? Did you consent to them being told?
  • If you have been asked to do something you’re uncomfortable with, is it directly treating the issue you have raised with your doctor? Or is it being presented as beneficial in some other way?
  • Are you being blocked from accessing a treatment you want, until you consent to something else?

Doctors must also maintain accurate and complete records and ensure that those records are held securely. You have a right to obtain a copy of those records and request that incorrect, incomplete, or outdated personal information in your records is corrected. Generally, the incorrect information will not be deleted however the correct information should be added to the records.

By asserting your right to privacy, you ensure that your dignity is respected and your autonomy is preserved, paving the way for a more compassionate and just healthcare system.

You have the right to support

You have the right to support, including bringing trusted individuals who can support and/or advocate for you, to ensure that your questions are answered and your experiences are validated and respected by healthcare providers.

 

People who have had negative experiences with doctors may find it difficult to advocate for themselves in medical environments. The same goes for people who haven’t had a lot of experience with doctors and are unsure of what to ask for, how to ask for it, and what boundaries you might want. Any time you go to see a doctor, it is okay to bring someone along that you trust to help. This might be a family member, a friend, or even someone in the intersex community that you trust. It never hurts to have someone in your corner if you struggle in medical settings.

Things to consider:

  • Would you feel more comfortable if you could bring someone with you who understands the issues that you’re facing? Are they a family member, a friend, or a community advocate?
  • Do you feel you can disagree with your doctor without being ridiculed or punished? If you refuse a particular treatment, are you being presented with alternatives? Would having a support person help in situations like these?
  • Is your doctor willing to provide you with the resources to explore all the options that are available to you? Are they upfront about how to look after yourself if you pursue a different course of action? Would a support person help you in seeking answers?
  • Would meeting other intersex people help you make a careful and thought-out decision?

There are a number of organisations that can provide peer support, and the opportunity to meet other intersex people who have been through similar experiences to yourself. Sometimes the opportunity to learn from the first-hand experiences of others can help inform your own decisions and how to self-advocate in the medical environment.

By asserting your right to support at the doctor’s, you empower yourself to navigate the healthcare system with confidence, ensuring that your voice is heard and your well-being is prioritised. 

You have the right to information

You have the right to information about your intersex variation, including full access to your medical records, the rationale behind treatments, and knowledge of all available alternatives.

Living with an intersex variation can require that you make complex medical decisions. When presented with choices, you need to be supported by information that allows you to make the best choices for yourself. Any doctor that you work with needs to be able to provide you with clear information that is evidence based and explained in a way that is easy to understand. They should be comfortable with answering questions, and willing to help you find information that they might not have at that moment. They should be willing to talk about alternatives to intervention, including no intervention at all. If you want to seek a second opinion, your doctor should respect and support that decision and assist you by making the appropriate referral. 

Things to consider:

  • Do I understand all the information as it has been presented to me, or are there words and concepts I don’t understand? What questions can I ask to help clarify my understanding?
  • Is my doctor being upfront when answering questions? Can they present information in a straightforward and accessible way?
  • Is my doctor being truthful? Do I need to verify any information that I don’t fully understand?
  • Is my doctor willing to find information when presented with a question they don’t have an answer to?

The idea is to work with your doctor to build a care plan. If you choose not to pursue certain courses of action, you should have a clear idea of potential consequences and may need to take other steps to take care of your health long term. These sorts of choices should be supported by your doctor. If you find them resistant or hostile to helping you understand the potential benefits or issues of different choices, it might be worth looking into lodging a complaint or finding a different doctor to work with.

 

How you understand information is also important. Your doctor needs to work with how you understand information so that the choices you make are based on full, current and accurate information and evidence. You should never be ridiculed or made to feel inferior if you don’t understand something and need to ask for clarification. Your doctor should not avoid or attempt to circumvent their duty to provide information because it is too complicated. Additionally, your doctor should not ignore any concerns you may have about your understanding of the information they have provided. You should always feel able to walk away, take some time, and do your own research if you feel like it will help you make a better decision.

Doctors and other medical professionals may have their own ideas about how your variation ought to be treated or managed. As such they may suggest different medical interventions that they think will be beneficial to you. If you experience health complications due to your variation or due to previous medical interventions, they may also suggest other treatments or things that need to happen to protect your health. In these circumstances you always have the right to consider alternatives to what is being presented. Your doctor should work with you to find out about alternatives, including the alternative of not having any further medical treatment. If a doctor is unwilling to consider alternatives to treatment that you are more comfortable with, you should not feel pressured to make those decisions until you feel like you have the information you need.

By asserting your right to information, you take control of your healthcare journey, empowering yourself to make informed and confident decisions that prioritise your well-being and respect your individuality.

You have the right to consent or say no

You have the right to consent to or refuse any medical treatment or intervention, ensuring that your autonomy and bodily integrity are always respected. 

Consent is an active, free and voluntary agreement for something to happen. This could mean consent to a treatment, tests or even an examination. Consent in a medical setting is vital. Nothing should happen to you without your explicit say so, and when you say no that should be respected as well. 

Our consent can sometimes be undermined in ways that are difficult to understand until after the fact, especially if you were not provided with alternative choices or pressured into making a choice before you were ready. Consent is also undermined if you do not fully understand the nature, purpose or consequences of an action. Your consent can change or be withdrawn at any time. 

Except in emergency treatment, consent must be fully informed and freely given. 

Doctors are required to provide patients with all the relevant information necessary for a patient to give informed consent. Any time you make a decision about your body, you should be made aware of all relevant information. It is reasonable to expect to be given the specifics of a treatment or procedure, its success rate and risks. Your doctor should discuss all possible outcomes, including long term effects and implications for any follow up procedures, alongside the consequences of not going through with a procedure or treatment and any alternative treatment options. It is important that a doctor treats these sorts of questions with full transparency. If you feel like your doctor is trying to encourage you along a particular treatment pathway by hiding or withholding information about other options, or only presenting selective information this doesn’t represent fully informed consent.

It’s also important to be able to say no to a doctor. Doctors have a lot of specialised knowledge gained from years of study and experience, and may be working from preconceived ideas of what should be desirable to a patient with an innate variation of sex characteristics. Under these circumstances you may be faced with pressure to agree with your doctor, or might find that disagreement is met with hostility and resistance. If you ever feel pressured or unsafe, know that seeking a second opinion or legal advice is a valid and empowering step.

Things to consider:

  • Do I have to keep telling my doctor no, even after I’ve made my intentions clear?
  • Are the health outcomes that I want accessible to me, or am I being presented with extra steps or procedures that I don’t want to agree to?
  • Is my doctor upfront and clear about all aspects of a procedure and the steps involved? Has my doctor addressed the likelihood of outcomes or complications? What follow up needs to happen? What are the long-term outcomes and implications?
  • Am I agreeing to a procedure because I want to, or because the doctor thinks I should?
  • Are procedures being presented to me individually or as a group of things I have to get done all at once? Am I comfortable with the way this is justified?
  • Do I feel safe to refuse treatment? Do I feel like I would be mistreated if I said no?

By understanding and asserting your right to consent, you take control of your healthcare journey. You have the power to make the choices that are right for your body- even if those choices are at odds with what is being recommended at the time.  Finding a doctor who you can trust to guide you and give you clarity with information ensures that informed decisions can be made and consent freely given or refused. 

You have the right to give feedback and have your concerns addressed

You have the right to give feedback and have your concerns addressed to ensure that your experiences and needs are respected and taken seriously by healthcare providers. Sharing feedback gives medical providers with the opportunity to improve their practice.

 

There are any number of reasons why you might have a poor experience with a doctor. You may struggle to communicate with them, or find you have incompatible ideas about what it’s like to live with an intersex variation. It’s important to find a doctor you can work with. Sometimes based on your location, or access to specialists, there may be circumstances where you don’t have the option of seeing a different doctor. In these situations, it’s important to share your concerns with the doctor and be able to stand up for your rights in the doctor’s office. If your concerns are not acted upon, you may want to obtain support from friends, family or advocates, or consider making a complaint.

 

Your mental health and well-being is a priority and it is important to understand the potential effects of poor healthcare experiences on your mental health and wellbeing, and to feel that you can seek help and support when you need it.

 

Things to consider:

  • How do you feel about seeing your doctor again? Do you feel persistent dread, anxiety, or distress? Do you delay going to the doctor as much as possible because of these feelings? Can you isolate those feelings to a particular incident or behaviour?
  • Are there other people you can talk to about their experiences with the same doctor? Are they consistent with your experiences? Would you feel comfortable treating someone else the way that you have been treated?
  • Is it possible to see a different doctor or specialist?
  • Were you given a straightforward and transparent avenue of complaint? Was your complaint addressed satisfactorily? Do you need to contact an organisation that deals with complaints of discrimination or health complaints?
  • How intrusive or persistent is the distress that you feel? Is it having an impact on other areas of your life? Do you need some additional support to help you work through those feelings? Are you talking to someone you trust, a counsellor, a psychologist, or peer support group?
  • How else are you taking care of your needs?

 

By voicing your concerns and providing feedback, you not only advocate for your own wellbeing but also contribute to creating a more inclusive and respectful healthcare environment for all.

You have the right not to be discriminated against

Everyone is equal and we should all be treated the same. It is against the law for someone to treat you unfairly because of your physical features related to your sex or your variations in sex characteristics.

 

Sex characteristic discrimination is when someone treats you unfairly or bullies you because of your physical features related to your sex. This type of discrimination is experienced by people born with variations in sex characteristics (people with intersex variations).

 

Sex characteristic discrimination may look like a health professional refusing to treat someone with an intersex variation because the person’s sex characteristics make the health professional uncomfortable, a health professional refusing to provide a patient with requested information about their variation or other behaviours that impact a person’s access to healthcare on the basis of their sex characteristics.

 

Here’s an example of discrimination on the ground of sex characteristics:

Viv is born with a variation of sex characteristics and Viv’s parents would like to understand what their options are, including the potential implications of delaying a surgical intervention. Viv’s parents seek information from the doctor. The doctor refuses to provide any information to the parents because they think it’s wrong to delay immediate surgical intervention.

 

By standing up against discrimination, you affirm your right to be treated with dignity and respect, ensuring that you are never unfairly judged or marginalised because you are intersex.

If you have difficulties with a doctor

It might just be that you haven’t found a doctor that you can work with yet. You might consider finding a new doctor that you can work with. While it can be difficult to build rapport with a new doctor who may or may not have a thorough understanding of your variation, it is important to find a doctor that you can trust, and who is willing to work with you instead of against you.

For smaller issues that are more easily resolved, it might just be a matter of bringing it to the attention of the right person. In some instances, they may have a better idea of how to escalate an issue that is outside of their control.

In situations where you wish to make a complaint, it’s worth checking with the practice or hospital to see if they have a mechanism for feedback or complaint. All hospitals have formal complaints processes. 

For situations where you feel like your rights have been compromised and you don’t feel safe to deal directly with that doctor and the structure around them, there are a number of third-party complaint mechanisms that can help. 

Finding Support & Making Complaints

Health & Human Rights Support Services around Australia

Australian Capital Territory

New South Wales

Northern Territory

Queensland

South Australia

sa.gov.au/health-and-community-services-complaints-commissioner

Tasmania

unity.tas.gov.au/

Victoria

Western Australia

Finding Support

Intersex Support Organisations

interLink – www.ilink.net.au

IntersAction for Health and Human Rights – https://interaction.org.au/ – Information and Advocacy

Intersex Peer Support Australia – https://isupport.org.au/ – Peer support

[additional orgs if authorised]

About this resource

This resource was developed with the kind assistance from the Victorian Equal Opportunity & Human Rights Commission, Gilbert + Tobin, Steph Lum and Aileen Kennedy.

CONTACT

  • +61 7 3017 1724
  • info@ilink.net.au
  • PO Box 1372 Eagle Farm QLD 4009
InterLink is a program of InterAction for Health and Human Rights. We respect your rights when using  our services.
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