Respect and safety

Feeling affirmed, supported and heard in medical settings results in improved patient outcomes, whether for gender affirming care, or for health concerns unrelated to being trans. No one likes to feel unsafe or disrespected, it’s also bad for our health1.

Many trans people report having negative or harmful interactions with health professionals2 and in research settings. This can include feeling uncomfortable, not being listened to, having decisions taken out of your hands or kept from you, non-consensual physical interactions or being involved in medical interventions or research that may be unethical, pathologising or used against our communities.

You have a right to healthcare, and to access healthcare services. It is unlawful, and against guidelines and First Principles of Medicine, to be refused care because of your gender.

The NSW Ministry of Health writes that “health care services are open to everyone regardless of gender, marital status, disability, culture, religious beliefs, sexual orientation, age or where they live in NSW.”

The Australian Charter of Healthcare Rights also states that you have the right to safety, respect and partnership with health professionals, including “making decisions with my healthcare provider, to the extent that I choose and am able to.”

42.1% of trans young people have reached out to a service provider who did not understand, respect or have previous experience with gender diverse people.

TransPathways3

What is informed consent?

Consent is key. Your health professionals should not do anything that you do not consent to, including physical examinations or ordering tests and scans. It’s okay for trust in your doctor to grow over time.

Informed consent is a model for providing gender affirming health care that centres a patient’s consent as the foundation of any medical processes. For informed consent to be reached, a patient will be provided with all the information necessary to make a decision, and must indicate they understand4. This model trusts trans people’s knowledge of ourselves, and our ability to understand potential risks and benefits.

What might you be asked about?

It can be really difficult to feel able to say “no” to a health professional, but you have every right to.

You have a right to not be subjected to inappropriate curiosity, which means being asked intrusive questions about your personal life or being subjected to invasive physical examinations that are not related to the medical issue at hand.

This is similar to what is known as “trans broken arm syndrome,” where a trans person presents with a broken arm and the doctor manages to find a link between the fracture and being trans.

A UK report found that 48% of trans respondents had experienced inappropriate curiosity, compared to 20% of cis lesbian, gay and bisexual respondents5.

Clinicians can find information about what questions to ask when providing care for trans patients here.

Additional resources on medical settings

You deserve health professionals who are on your team, but when that isn’t possible, it’s important to be able to support yourself.

We have developed a map of doctors who offer gender affirming care, and who are allies to trans patients through the language they use, care they give, and their approach to health care. Find the list and map here.

The medical affirmation section of TransHub takes into account that the health outcomes of trans people are often lower as a result of the prejudice and harm we may experience in medical settings2, 3.

The medical affirmation section also includes information about hormones and surgery, and how to access them. We’ve also included information about how to advocate for and look after yourself if your health providers are less supportive.

We’ve even prepared a letter you can print out and take to your doctor’s office to prime their receptionists and doctors to use your preferred name and pronouns, without having to ask for them out loud, available below.

If you’ve experienced harm or discrimination from a health professional, you can complain. Find out more about this process here.

‘Over three quarters (77.5%; n= 1278) of trans participants reported that they had been treated unfairly because of their gender identity in the past 12 months.’

Private Lives 36

It's important to know your rights when participating in research studies. We’ve developed this section in collaboration with the Australian Professional Association for Trans Health (AusPATH).

Building evidence about how to ensure trans people of all genders and ages can thrive is important. Many researchers and research bodies across Australia are very trans-affirming, but when you’re participating in research, it’s a good idea to ask and find out the answers to some questions, such as:

• Who are the researchers and who do they represent?

• What kind of human research ethics committee approval have they received?

• How connected are they to the trans community?

We provide guidance to researchers here and one key point is that trans-led research about trans lives is always best.

Research is only ethical if consent is a voluntary choice, based on sufficient information and adequate understanding of both the proposed research and the implications of participation in it.

These are some principles of research that you can keep in mind before and after you participate:

1. Consent: Any research you are involved in should have a clear Participant Information Statement and a Participant Consent Form. You should closely review both before consenting to participate in research.

2. Collected data: Most information and consent statements should include information about what will happen to the data collected about you. There should also be clear information about how you can withdraw your consent to participate in the research, and what happens with your data once you withdraw.

3. Withdrawing from a study: All research participants should be able to withdraw from a study at any time, without it having an impact on the care they receive. There are some instances that care may be impacted, for example if the study is specifically about the provision of medical care or pharmaceutical intervention.

4. Withdrawing data: When withdrawing from research, you may be able to request that your data should be destroyed and no longer used in publications or presentations. By sending off a request for withdrawal of yourself or your child’s participation, you are letting them know they should not use your experiences, information, or anything about you in their study.

   In some forms of research, it is not possible to withdraw your data, for example anonymous surveys or as agreed in the consent form. It is still possible in those situations to make a complaint or a statement of dissatisfaction if required.

5. Complaints: You can make a complaint to the human research ethics committee overseeing the study if you have issues with the way in which the study has been conducted. Any complaint must be taken seriously by the committee. If you make a complaint, it is often best done separately from the withdrawal of consent.

6. Making a statement: When withdrawing from research, you may also state your dissatisfaction at how any research you have contributed to is written and interpreted. It is also important to highlight any aspect of a study’s conduct that concerned you.

Complaints may be made by participants, researchers, staff of institutions, or others. All complaints should be handled promptly and sensitively.

The National Statement on Ethical Conduct in Human Research (2007)

What if you feel research has not been conducted ethically?

The National Statement on Ethical Conduct in Human Research (2007) can help support decision-making in situations where you feel research has not been conducted ethically. The National Statement can be found in full here.

One example of a potentially unethical and harmful research situation is if you feel coerced to participate in a research study at a hospital or clinic.

This is especially so if you feel that by not participating, it would impact your or your child’s access to medical gender affirmation such as puberty blockers and hormones.

The Participant Information Statement for the study should state clearly how you can withdraw. If you feel that this was not made clear to you when you consented or that you were coerced into participation in any way, then you have the right to make a complaint about this to the ethics committee.

If you feel that researchers had poor intent in the conduct of the research and the interpretation of the writing and the findings, you can express the ways in which you do not believe the research aligns with these principles if you wish to in your complaint.

In this example, the following sections of The National Statement may be relevant:

• Section 2.2.9 addresses coercion: “No person should be subject to coercion or pressure in deciding whether to participate. Even where there is no overt coercion or pressure, consent might reflect deference to the researcher's perceived position of power, or to someone else's wishes. Here as always, a person should be included as a participant only if his or her consent is voluntary.”

• Section 3.1.30 addresses voluntary consent: “Researchers should explain to potential participants that their access to any services or supports normally provided by the person trying to recruit them will not be affected by their decision to accept or decline research participation.”

• Section 4.3 addresses pre-existing relationships and coercion: “This chapter is about pre-existing relationships between participants and researchers or between participants and others involved in facilitating or implementing the research. These relationships may compromise the voluntary character of participants' decisions, as they typically involve unequal status, where one party has or has had a position of influence or authority over the other. Examples may include relationships between…. health care professionals and their patients or clients….”.

Researchers can address these issues. The National Statement contains a number of solutions to mitigate coercion:

• According to section 4.3.1, being in an unequal or dependent relationship is a reason to pay particular attention to the process through which consent is negotiated.

• According to section 4.3.2, researchers should wherever possible invite potential participants to discuss their participation with someone who is able to support them in making their decision. Where potential participants are especially vulnerable or powerless, consideration should be given to the appointment of a participant advocate.

• According to section 4.3.7, a person declining to participate in, or deciding to withdraw from, research should not suffer any negative consequences, such as unfair discrimination, reduction in the level of care, dismissal from employment, or any other disadvantage. It is important that this was conveyed to you during the consent process.

• According to section 4.3.9, if the researcher has a pre-existing relationship with potential participants, it may be appropriate for their consent to be sought by an independent person.

“Researchers exercise beneficence in several ways:

In assessing and taking account of the risks of harm and the potential benefits of research to participants and to the wider community, in being sensitive to the welfare and interests of people involved in their research, in reflecting on the social and cultural implications of their work.”

The National Statement (2007)

If you do not feel that these principles have been followed, you have the right to make a complaint.