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We have compiled a list of open access resources on the topic of young people’s inclusion in research and the unique ethical considerations of involving youth as research participants. Please see below for links and summaries of each resource.
- This report by the World Health Organization makes recommendations on various aspects of youth sexual health research. These recommendations were made in consultation with a group of global experts. The advice provided is targeted towards researchers, ethics committee members and sponsors involved in sexual and reproductive health research.
- This article discusses important ethical standards that researchers should follow when conducting youth HIV research in low- and middle-income countries. It addresses why ethical standards are important, as well as common ways they can be violated during a research study.
We have compiled a list of resources on the topic of challenges with obtaining consent for young people’s participation in research, including HIV studies. Please see below for links and summaries of each resource. All resources are open access or available from the VOICE open call team.
- The authors examine the current legal and ethical requirements governing youth participation in sexual health research. The article is from a U.S. perspective, and uses the ethical principles of Justice, Respect for Persons, and Beneficence (minimizing risks and maximizing benefits) to discuss young people’s research participation. The authors distinguish between consent for clinical care and consent for research participation, and discuss the corresponding guidelines for these different scenarios. A list of practical considerations for youth participation in research studies is provided for researchers.
- Flicker and Guta argue that requiring parental consent for youth to participate in sexual health research can be confusing, inconsistent, and even harmful. Requiring parental consent may be inappropriate and unjustified, and in some cases can prevent vulnerable youth from participating in research altogether. The authors offer a variety of strategies to help develop a more inclusive consent process for youth. The challenges of parental consent as well as possible alternatives are evaluated through the authors’ experience with the Toronto Teen Survey, a collaborative research initiative lead by Planned Parenthood Toronto.
- This article discusses questions that were posed at the 2015 US National Institutes of Health workshop that focused on scientific, ethical, and legal challenges with obtaining consent for youth to participate in HIV research. The workshop’s findings are examined, but not all of the questions had obvious answers to them. The article summarizes some of the remaining areas of debate in regard to youth research participation.
- The UNICEF brief explains the importance of including young people in research and the need to balance inclusion with protection. It gives a history of the legal regulations surrounding youth consent to research participation. Current research in psychology and neuroscience is used to evaluate the capability of young people to provide informed consent. Some recommendations are provided for alternatives to parental consent; for example, if it is determined that a parent is unable to act in the best interests of their child.
- This article examines the question of whether and how to identify an appropriate adult who can provide informed consent in place of young person’s parent or legal guardian. The authors argue that there are instances in which the power to provide proxy consent for younger children should be conferred to caregivers by ethics committees, where parents or legal guardians are unavailable. However, the authors note that this should take place only under specific circumstances, including low-risk studies and studies that do not involve a clinical trial.
Adolescent participation in HIV research: consortium experience in low and middle-income countries and scoping review (Please note: this article is not open access but VOICE open call team can provide you with a copy if you want to read the full article; please email us at OpenCallVOICE@gmail.com)
- This article is written by a Bioethics Working Group focused on youth HIV research. The article summarizes the ethical and legal challenges with youth participation in HIV research, and describes the requirements for obtaining youth consent to HIV research participation in seven countries: Brazil, Kenya, Mozambique, Nigeria, South Africa, Uganda, and Zambia. Three potential solutions are proposed for consent strategies that may help to increase the inclusion of young people in HIV research: independent consent, waiving parental/guardian consent, and surrogate decision makers. This article was written by members of the HIV research group that is supporting the VOICE open call (PATC3H), and was the inspiration for why the VOICE open call was organized.