The Importance of Determining Consent Practices for Research In Vulnerable Youth

 

Abandoned youth are considered to be one of the most vulnerable populations. Statistically, these children are at higher risk for mental and physical health issues, abuse and are vulnerable to both exploitation and coercion (Greiner, 2018). Many of these risks are believed to stem from the care conditions experienced by the children which tend to be suboptimal and in some situations, dangerous. Therefore researchers are highly motivated to determine how to provide better care for this population and improve their overall health and wellbeing. However, children, who are not believed to be fully autonomous in most countries until the age of 18, must have an adult consent for them in order to participate in research. This creates significant challenges in studying this population as by definition, they do not have a parental figure to consent for them. This poses an ethical dilemma for researchers intending to study abandoned children. Not only must they develop a study which complies with institutional ethical guidelines, they also must decide who in the child's life will provide informed consent, and as such, who is responsible for their welfare. In “Who Speaks for Me? Addressing Variability in Informed Consent Practices for Minimal Risk Research Involving Foster Youth” and “Ethical Considerations in International Research Collaboration: The Bucharest Early Intervention Project” researchers examine ethical implications faced by those studying these vulnerable populations and attempt to better define ethical guidelines for conducting research on abandoned youth.

In “Who Speaks for Me? Addressing Variability in Informed Consent Practices for Minimal Risk Research Involving Foster Youth” Mary V. Greiner et al. examine the extreme variation in informed consent practices for research involving foster care children. As wards of the state, these youth lack a traditional parental figure to serve the role of guardian Instead, children in foster care have a multitude of adults who are responsible for them, each serving a different role. Therefore, it is unclear who is responsible for providing informed consent for the child and who will make the decision that best benefits the child, ensuing their health, welfare and best interests (112-113). Greiner's work aims to identify the inconsistencies with informed consent practices for foster children and provide recommendations for future studies involving this population.  

As predicted, through a systematic review of minimal risk studies involving foster youth conducted in the United States, Greiner was able to identify a wide variation in the individual required to consent for the child. “The individuals required to consent, in decreasing order of frequency, were case workers (16, 48%), foster caregivers (12, 36%), biological parents (7, 21%), judges (5, 15%), and GALs (2, 6%). Twenty-nine (88%) studies required the youth’s assent and 2 (6%) the youth’s consent alone” (114). These results show that not only is it very unclear who is in the best position to consent for these children but that it is a complicated issue. This further reveals that there is little consensus on who is ultimately responsible for the wellbeing of foster youth, a realization that is deeply troubling.

 In the article “Ethical Considerations in International Research Collaboration: The Bucharest Early Intervention Project”, Charles H. Zeanah et al. further study the ethical considerations that must be made when conducting research on vulnerable populations. Specifically the study examines ethics of the The Bucharest Early Intervention Project (BEIP􏰁), The BEIP is the first randomized study of foster care as an alternative solution to institutionalized care for young children. The study involved 136 children ages 5-31 months, who had been cared for by the state in institutions for at least half of their life . Half were selected to be placed in foster care while the others remained in institutions. At various stages these children were assessed on developmental characteristics via observation and neuro imaging techniques (565).The aim of the study was to analyze the impact institutional care and foster care have on development and ultimately determine if institutionalized care for young children had a detrimental affect on their development. The goal of this paper was to determine if the potential benefits of the study outweighed the ethical challenges and project risks (560).

Ultimately, the review concluded that the benefits of the project outweighed the risks (560). However, as Dr. Vukov pointed out in his talk, whether the study was completely ethical remains unsettled. The fact that a research study which has been approved by the review boards of two countries can still seem unethical is concerning and points to a flaw in the system. 

In approving the study, the Commissions on Child Protection in Bucharest consented for institutionalized children to participate in the study. No individual was responsible for consenting for any of the children who remained institualized, rather a board approved the study as a whole. This approach fails to take individual concerns into account and as such fails to consider what is best for each of these children. It is worth noting that researchers were required to gain consent from the birth parents of those selected to be placed in foster care as they retained custody, however these are the same parents who placed their children in institutionalized care indicating that they may not act in the best interests of the child. Overall, the consent required on behalf to conduct this study was minimal and insufficient. 

Both works indicate that more consideration needs to be given to the consent practices used when conducting research with such a vulnerable population. While research on abandoned children is vital, it is necessary that it is conducted in a manner that takes the child's best interests into account and that requires consent from an adult who values their welfare.  

Greiner, M. V., Beal, S. J., Allen, A., Patel, V., Meinzen-Derr, J., & Matheny Antommaria, A. H. (2018). Who Speaks for Me? Addressing Variability in Informed Consent Practices for Minimal Risk Research Involving Foster Youth. Journal of Health Disparities Research and Practice, 11, 111-131. doi:https://digitalscholarship.unlv.edu/cgi/viewcontent.cgi?article=1797&context=jhdrp

Zeanah, C. H., Koga, S. F., Simion, B., Stanescu, A., Tabacaru, C. L., Fox, N. A., & Nelson, C. A. (2006).    Ethical considerations in international research collaboration: The Bucharest Early Intervention Project. Infant Mental Health Journal, 27(6), 559-576. doi:10.1002/imhj.20107