In recent years, as infant mortality has declined, the field of adolescent health has experienced a growth spurt, culminating in a recent Lancet Commission report that made the case for adolescence as a cornerstone for lifelong health. Dr. John Santelli, professor of population and family health and contributor to the Lancet report, is the editor of a new series of UNICEF briefs that support continued research into the record 1.8 billion teenagers alive today, one of the goals set by the Lancet Commission. The seven briefs examine a variety of challenges facing researchers, from practical considerations about data sources to ethnical concerns.
[Photo: Dr. John Santelli]
“There is increasing recognition that if you take care of adolescents today, they will do better through their adult years, and their children will do better too,” says Dr. John Santelli.
A paper written by Dr. Santelli and co-authors Dr. Terry McGovern, acting chair of population and family health, and researcher Dr. Sonia Haerizadeh suggests a reason why scientists shy away from studies of adolescents: informed consent. To meet ethical standards, researchers follow precepts of informed consent to ensure that study participants understand research goals and voluntary ascent to taking part. But many researchers maintain the distorted view that adolescents have a limited ability to make reasoned choices, underscored by a low social status and susceptibility to adult coercion.
In studies of HIV in Sub-Saharan Africa, adolescents are frequently allowed in trials of educational interventions, but excluded from trials of HIV vaccines and pre-exposure prophylaxis (PrEP), an antiviral therapy used as prevention, even though these interventions would be helpful to this age group. As a result, clinicians must extrapolate findings from adult studies that may not apply to teenagers.
The UNIFEF brief argues that researchers should do more to consider children’s rights and capacities inscribed by the United Nations. In many countries, teenagers may already be legally emancipated through marriage or military service; parents may also be unavailable or misaligned with the interests of their child. Moreover, research from neuroscience and psychology suggests that even early adolescents whose brain and social development is still in process are capable of making informed choices about whether or not to participate in research.
“I have too often seen adolescents excluded from specific research projects,” Dr. Santelli wrote in a UNICEF blog post. “Either the investigators or the ethics committee could not figure out an ethical way to include adolescents in studies that promote adolescent health and well-being. We can and should do better.”