News at Medicine - February 2019 - Reducing hidden harms

Reducing hidden harms
February 1, 2019
Two masters students establish research guidelines for vulnerable populations 
james-baldwin-276255-unsplash.jpgSt. John’s-based Choices for Youth served over 1,500 at-risk youth last year. Over the years, they have been inundated with requests from researchers wanting access to the potentially vulnerable youth who use their services.

“There is a common misconception within community nonprofit organizations on what researchers are allowed to ask for and what staff can push back on,” said Ally Jamieson, manager of research and evaluation at Choices for Youth. “Staff are often afraid they will lose funding if they don’t allow researchers access to community service users, which usually isn’t true and we wanted to make sure our staff at Choices for Youth were supported to learn more about ethics in research.”

Ally felt there was an organizational obligation to lay out boundaries for researchers, as they may not be aware of the effect their research has on this group. She started by contacting the Division of Community and Health Services at the Faculty of Medicine to help develop guidelines on research ethics.

Enter Angela Power and Janine Elliott, masters students in Health Ethics under the guidance of Dr. Fern Brunger, professor of health ethics at the Faculty of Medicine.

The two students, with their professors guidance, spent months conducting background research and working closely with the team at Choices for Youth to develop guidelines that would benefit all stakeholders, especially at-risk youth. 
In a recent presentation, Angela and Janine explained how they see the guidelines reducing the risk of exploitation and minimize research fatigue of youth.

“At the end of the day, we want any at-risk youth to feel better off after participating in a research project,” said Janine, who is also a registered nurse.

In the end, the team decided to keep the guidelines broad rather than Choices for Youth-specific so they could be applied to any potentially vulnerable youth or adult population.

 Angela-Power.jpg“We purposefully developed this document so that it may be leveraged by any community organization, research ethics board or researcher who is working in this space,” said Angela, who has a background in privacy and change management. “The goal was to provide greater education on the ethical considerations and raise awareness of the hidden risks that we as a collective must be aware of.”

While both Angela and Janine were keen to participate in this project, this was the first time both were working with a community partner focused on youth.

“They put a lot of careful thought into the research and were open to being able to stretch their own learning curve,” said Ally. “It was great to work with them as they understood ethics really does play a significant role beyond philosophy and it does have to do with the manner in which they are practiced.”

Dr. Brunger plans to publish a paper about the guidelines that will be available for public access.

Choices for Youth’s own guidelines will be available for external research partners in the coming weeks. The organization also plans to launch a program-wide training for staff so they know their rights and responsibilities in a research context, as well as another guide for youth to understand their rights.  

“It was our intent that the guidelines could further awareness and dialogue with youth such that they become further engaged in the design, execution and overall decision-making for research that involves them,” said Angela.  

Elliott_Janine_20181214_006.jpg“Our intent was not to create barriers for researchers who wish to conduct research with potentially vulnerable youth populations,” added Janine. “The guidelines are meant to facilitate research that is collaborative with youth and youth practitioners from design to dissemination because ultimately, the responsibility to conduct research ethically from design to dissemination is magnified when working with populations that have increased vulnerabilities.”

First photo: stock photography 
Second photo: Angela Power
Third photo: Janine Elliott