The Ethics of Youth-Centered Innovation

By Rena Greifinger, Senior Project Lead, MaverickNext, Esther Nantambi, Radio Presenter and Communications Assistant, Youth Equality Center, and Amy Uccello, Senior AYSRH Technical Advisor, PSI

Human-Centered Design (HCD) allows us to step into the lives of the young people we serve, and work together to better create solutions. If done correctly, HCD can spark innovative thinking to ignite breakthrough design. But without the proper systems and guidelines in place, the process can potentially be harmful to young people. Esther Nantambi asks Rena Greifinger, the senior lead for PSI’s MaverickNext program, and Amy Uccello, PSI’s senior adolescent and youth sexual and reproductive health technical advisor why the time is now to refocus our attention on young people’s safety and integrity, particularly at the nexus of where research and program implementation meet. They discuss why PSI, in partnership with the HCD Exchange and dozens of signatories, is launching the Commitment to Ethics in Youth-Powered Program Design.

Esther Nantambi: Before diving into guidelines, let’s start at the beginning. What is HCD?

Rena Greifinger: HCD is a creative problem-solving process that brings health consumers in as equal project partners.

Amy Uccello: HCD allows us to apply a human-centric lens to program design and infuse empathy and insights into the body of evidence we’re working with. In doing so, the process incites a unique programmatic response in a way that numbers alone often can’t.

EN: What prompted the development of the Commitment to Ethics in Youth-Powered Program Design?

AU: We’ve long-held to high-quality protection measures, such as Institutional Review Board (IRB) approvals. However, HCD is still new in global health and may not require IRB approvals. A mutually agreed upon Commitment among donors, implementers, evaluators, design firms and young people offers an additional safety net to ensure HCD remains a trusted and safe space for all young people involved.

RG: The Commitment complements rather than replaces existing validated guidelines and protocols for ethical research. The Commitment is a shared intention to continually improve, as well as an invitation to our community to openly discuss the complexity and nuances of this work.

EN: What core principles does the Commitment outline?

RG: There are 21 principles organized into three categories: Respect, Justice and Beneficence (Do No Harm). Respect means valuing young people and the lives they live. Justice refers to the inherent power imbalance between young people and adults, including those from within and outside the program country. We ensure justice by bringing young people into the HCD process as equals in program design and delivery. Beneficence means maintaining the well-being of young people when conducting HCD.

EN: What is at risk if we don’t uphold these principles?

RG: We risk making a vulnerable group even more vulnerable to stigma and negative consequences, while also losing their respect and partnership. Hopefully, everyone is already keeping ethics at the center of their work; it’s just a friendly nudge to our community to continue to walk our talk of meaningfully and safely working in partnership with young people.

AU: Global commitments help to keep each of us accountable, drive advocacy efforts among those who have not yet committed and instill clear and agreed upon parameters for all those who commit.

Banner image: © Ideo.org

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