How can Trans Youth Health Research be More Ethical?

Concerns concerning studies conducted with 79 trans youth and their families who sought help at the Children’s Hospital Westmead were raised in last Monday’s Four Corners segment on gender affirming care.

Following the Four Corners segment, New South Wales’ health minister announced a review of scientific evidence concerning health care for trans youth persons.

One family who participated in the ABC program’s research expressed shock and sadness at how they and others in their community were portrayed and how the study was framed when it was published. The study found linkages between family trauma and dysfunction, as well as high rates of “desistance” (defined in the study as the resolution or elimination of gender-related distress).

The program sparked serious concerns regarding ethical research. What are the responsibilities of researchers and ethical committees in order to achieve the greatest results? How can we ensure that ethical principles are followed for trans youth persons and their families, especially when research may be one of the few options for receiving care? How can trans youth persons and their families know when to sign up and when not to sign up?

Obligations and supervision

Before human research with people may begin in Australia, it must be approved by a human research ethical committee. These panels are frequently found at colleges, government agencies, and hospitals. They include a chairperson, members of the public, and individuals with expert expertise and current research experience.

The goal of ethics committees is to ensure that research proposals adhere to ethical standards and rules. According to them, research should be respectful, culturally safe, and conducted in the best interests of individuals and communities.

Culturally safe research is especially important for marginalized communities. This includes transgender youth, many of whom are anxious and depressed as a result of stigma and discrimination.

Ensuring that study participants are culturally safe means that they feel accepted and are socially, emotionally, and physically secure when taking part in health research. Recognizing that research participants may have more than one marginalized identity, such as young Aboriginal trans persons or trans youth people with a disability, contributes to cultural safety.

Researchers and ethics committees must also ensure that research is carried out ethically. Doing research responsibly entails being open and honest in developing, carrying out, and reporting research findings.

What about transgender youth and their families?

“Do good”, “do no harm”, and “nothing about us without us” are important ethical ideals. As a result, it is expected that research involving young transgender persons and their families will be conducted ethically, responsibly, and with integrity.

Young trans individuals and their families must be involved in the study process at all stages. Before study proposals are presented to ethical committees for approval, partnerships must be formed. Collaboration with trans children, youth, families, and communities fosters reciprocal trust, respect, and accountability.

When young trans persons and their families are not included as study partners in a meaningful way, research findings can be misconstrued. This can be harmful to children and their families.

The Wellbeing, Health, and Youth Engagement Framework, developed in collaboration with young people from various marginalized groups, gives a set of values and practical concerns for academics to consider in order to foster ethical engagement with young people. These include investigating how co-design might result in a youth-centered, strengths-based strategy focused on maximizing opportunities for health and wellbeing.

Participants and their loved ones are unlikely to be surprised by how their experiences are conveyed when participation incorporates mutual trust and accountability, diversity and inclusion, equity and responsiveness, and equity and responsiveness.

How can transgender youth and their families evaluate research ethics?
Participants should be given detailed information about the study and the consequences of participating. Before selecting whether or not to participate in research, trans youth and their families should be aware of their rights in research settings, such as the ability to complain and what happens to their personal data if they withdraw.

Before agreeing to participate in research, ask the following questions:

• Do the researchers have experience with the health of trans children and young people?
• What companies do they work for?
• Why are they conducting research?
• How close are they to the communities they are studying?

Participating in research should be voluntary. It should not include any form of coercion, such as the fear that not participating in the research will result in a person not having equal access to gender-affirming health care.

Extensive research is required

Young transgender people and their families face considerable marginalization and health disparities.

Strong research is essential for eliminating health disparities and enhancing the health and well-being of young trans persons.

To ensure that this study is of the best quality, ethics committees must have the expertise to uphold ethical principles in trans children and adolescents research. They may require additional training and should seek independent advice from subject matter experts, especially those with lived experience.

As demonstrated by the Four Corners program, high-quality guidelines for research with trans individuals, including children and adolescents, are desperately needed.

Source Link