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: All together now – three evolutionary perks of singing

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

All together now – three evolutionary perks of singing

Dec 24, 2014

We're enjoying the one time of year when protests of "I can't sing!" are laid aside and we sing carols with others. For some this is a once-a-year special event; the rest of the year is left to the professionals ...

We're simply having an analogue Christmas time

Dec 23, 2014

The British Christmas that Charles Dickens serves up to us is rich in food and warmth, two things that in his day were often thinly stretched throughout the year in many homes. These days, for most of the y ...

User comments : 0

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.