Better ethics education needed in community-based research

May 03, 2012

A growing number of health research programs are collaborating with community groups to conduct research. The groups help recruit study participants, obtain informed consent, collect data and provide input on study design and procedures.

But existing programs that educate researchers, community groups and institutional review boards about research ethics "fail to meet the needs of all groups that have a role in community-engaged research," according to an article in the Journal of Empirical Research on Human Research Ethics.

First author of the study is Emily E. Anderson, PhD, MPH, an assistant professor in the Neiswanger Institute for Bioethics & Health Policy of Loyola University Chicago Stritch School of Medicine.

Community-engaged research has been defined as research that provides communities with a voice and role in the research process, beyond simply providing access to research participants.

Community-engaged research raises numerous unique ethical issues that have not been fully explored from the perspectives of all parties, Anderson and colleagues write. Academic and community partners sometimes have different goals, expectations, access to resources, work styles, types of expertise or interpretations of research results. Community-engaged research also may pose risks to all members of a group -- even those who do not participate directly in the research -- when findings potentially could label or stigmatize the entire group. Community partners also may experience distress when conducting research in communities where they work or live, due to feelings of responsibility beyond their research roles.

To address these and other ethical issues, the authors recommend numerous best practices for members of institutional review boards and those involved in community-engaged research partnerships. The authors also proposed a detailed research agenda for studying ethical issues in community-engaged research from the perspective of several stakeholders.

This effort was supported by the national Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through grants to several institutions.

Anderson, who is corresponding author of the article, has worked with several community-engaged research projects in Chicago. Her research interests include empirical research in , institutional review board policy and processes, health disparities and in public health research and practice. She also has served on several institutional review boards.

Explore further: Couples need just one conversation to decide not to have children

add to favorites email to friend print save as pdf

Related Stories

Improving university-community research partnerships

Nov 09, 2009

Researchers from Tufts University and their community-based colleagues have identified several strategies to improve community-based participatory research (CBPR) partnerships. A study published in a supplement to the November ...

New ethical guidelines needed for dementia research

Mar 29, 2010

How do we handle the ethical dilemmas of research on adults who can't give their informed consent? In a recent article in the journal Bioethics, ethicist Stefan Eriksson proposes a new approach to the dilemma of including dement ...

Recommended for you

Residents of 'boom time' suburbs face unsustainable commutes

21 hours ago

People living in the 'boom time' suburbs of Dublin are more likely to endure unsustainable commutes to work than those living in older accommodation. Research shows that people living in newly constructed housing in the Greater ...

Male-biased tweeting

Apr 23, 2014

Today women take an active part in public life. Without a doubt, they also converse with other women. In fact, they even talk to each other about other things besides men. As banal as it sounds, this is far ...

User comments : 0

More news stories

Google+ boss leaving the company

The executive credited with bringing the Google+ social network to life is leaving the Internet colossus after playing a key role there for nearly eight years.