Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Feature Article
  • Published:

Communications with research participants and communities: foundations for best practices

Abstract

Communities and research participants increasingly feel that they have rights to be equal partners with researchers and to have access to the results of studies to which they have contributed. Concurrently, research sponsors have become aware of legal liabilities, societal repercussions, and credibility impacts of ignoring research communication responsibilities. However, issues related to research communications are rarely discussed at professional meetings or taught in academic programs. As a result, individual investigators may not be clear about their duties to communicate the results of their research. It is important to address this gap between expectations and abilities, because researchers' lack of communication fosters a climate of distrust in science and implies disinterest or disrespect for participants and communities. Ethical, legal, and professional frameworks and practices were reviewed to develop insights about principles, guidelines, and means that can be used to promote best practices. A review of general research guidance and specific requests for proposals revealed sponsors' communication priorities. While there are barriers to research communication, there is an increasing awareness among sponsors and investigators that effective and responsive communication is not a cheap or uniform add-on to a project or proposal. Communications must be tailored to the project considering all potential stakeholders, and resources need to be allocated specifically for communication activities within projects. Researchers, sponsors, professional societies and academia all have opportunities to improve principles, policies, frameworks, guidelines and strategies to foster “best practice” communication of research results.

This is a preview of subscription content, access via your institution

Access options

Rent or buy this article

Prices vary by article type

from$1.95

to$39.95

Prices may be subject to local taxes which are calculated during checkout

References

  • American College of Epidemiologists (ACE). Ethics Guidelines. Available at http://www.acepidemiology.org/policystmts/EthicsGuide.htm, 2000.

  • American Industrial Hygiene Association (AIHA). Code of Professional Ethics for Industrial Hygienists. Available at http://www.aiha.org/Committees/html/Ethics/jiheec-code.htm, 2002.

  • American Public Health Association (APHA). Public Health Code of Ethics. Available at http://www.apha.org/codeofethics/ethics.htm, 2002.

  • Brodkin C.A., et al. Choosing a professional code for ethical conduct in occupational and environmental medicine. J Occup Environ Med 1998: 40 (10): 840–842.

    Article  CAS  Google Scholar 

  • Callahan D., and Jennings B. Ethics and public health: Forging a strong relationship. Amer J Public Health 2002: 92 (2): 169–176.

    Article  Google Scholar 

  • Goldin R.A., (Ed.). Codes of Professional Responsibility, 3rd edn. The Bureau of National Affairs, Inc., Washington, DC, 1994.

    Google Scholar 

  • Health Canada. Health Policy Research Program (HPRP) Research Funding. Available at http://www.hc-sc.gc.ca, 2002.

  • International Commission on Occupational Health (ICOH). Occupational health code of ethics. Bull Med Eth 1992: 82: 7–11.

  • Israel B., et al. Critical issues in developing and following community based participatory research principles. In: Minkler M, and Wallenstein N. (Eds.). Community-Based Participatory Research for Health. Jossey-Bass, John Wiley & Sons, San Francisco, 2003, pp. 53–76.

    Google Scholar 

  • Jensen J.V. Ethical Issues in the Communication Process. Lawrence Erlbaum Associates, Publishers, Mahwah, NJ, 1997.

    Google Scholar 

  • Johannesen R.L. Ethics in Human Communications, 4th edn. Waveland Press, Inc., Prospect Heights, IL, 1996.

    Google Scholar 

  • Kultgen J. The ideological use of professional codes. In: Stichler R.N., and Hauptman R. (Eds.). Ethics, Information and Technology: Readings. McFarland & Company Inc., Publishers, Jefferson, NC, 1998, pp. 273–290.

    Google Scholar 

  • Langford I.H. An existential approach to risk perception. Risk Anal 2002: 22 (1): 101–120.

    Article  Google Scholar 

  • Minkler M., and Wallenstein N., (Eds.). Community-Based Participatory Research for Health. Jossey-Bass, John Wiley & Sons, San Francisco, 2003.

    Google Scholar 

  • National Health and Medical Research Council (NHMRC) and Consumer's Health Forum of Australia (CHFA). Statement on Consumer and Community Participation in Health and Medical Research. Available at http://www.health.gov.au/nhmrc/publications/synopses/r22syn.htm, 2002.

  • National Institute of Environmental Health Sciences (NIEHS). In: O'Fallon L.R., Tyson F.L., and Dearry A. (Eds.). Successful Models of Community-Based Participatory Research. Final Report. Available at http://www.niehs.nih.gov/translat/cbr-final.pdf, 2000.

  • Natural Sciences and Engineering Research Council of Canada (NSERC). Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Available at http://www.ncehr-cnerh.org/english/code_2.htm, 2002.

  • Newton L. The origin of professionalism: sociological conclusions and ethical implications. In: Stichler R.N., and Hauptman R. (Eds.). Ethics, Information and Technology: Readings. McFarland & Company, Inc., Publishers, Jefferson, NC, 1998, pp. 261–272.

    Google Scholar 

  • O'Fallon L.R., and Dearry A. Community-based participatory research as a tool to advance environmental health sciences. Environ Health Perspect 2002: 110 (Suppl. 2): 155–159.

    Article  Google Scholar 

  • Pontifical Council for Social Communications (PSCS). Ethics in Communications. Available at http://www.vatican.va/roman_curia/pontifical_councils/pccs/documents/rc_pc_pccs_doc_20000530_ethics-communications_en.html, 2002.

  • Powell D., and Leiss W. Mad Cows and Mother's Milk: The Perils of Poor Risk Communication. McGill-Queen's University Press, Montreal, 1997.

    Google Scholar 

  • Schulte P. Interpretation and communication of data. In: Schulte P.A., and Perera F.P. (Eds.). Molecular Epidemiology: Principles and Practices. Academic, Press San Diego, 1993.

    Google Scholar 

  • Strossen N. Academic and artistic freedom. In: Stichler R.N., and Hauptman R. (Eds.). Ethics, Information and Technology: Readings. McFarland & Company, Inc., Publishers, Jefferson, NC, 1998, pp. 45–63.

    Google Scholar 

  • Sullivan M., et al. Researcher and researched-community perspectives: toward bridging the gap. Health Educ Behav 2001: 28 (2): 130–149.

    Article  CAS  Google Scholar 

  • Swan J.C. Untruth or consequences?. In: Stichler R.N., and Hauptman R. (Eds.). Ethics, Information and Technology: Readings. McFarland & Company, Inc., Publishers, Jefferson, NC, 1998, pp. 64–75.

    Google Scholar 

Download references

Acknowledgements

I gratefully acknowledge the support provided by the Mickey Leland National Urban Air Toxics Research Center for the preparation of the related August 2002 ISEA-ISEE meeting presentation and this manuscript. I also acknowledge Dr. Tee Guidotti of The George Washington University and the peer-reviewers for their insights that contributed to the final article. I especially thank two staff members of the University's Center for Risk Science and Public Health — Elizabeth Shinkman, who conducted major portions of the literature search and Lisa Ragain, who conducted most of the Internet searches.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Rebecca T Parkin.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Parkin, R. Communications with research participants and communities: foundations for best practices. J Expo Sci Environ Epidemiol 14, 516–523 (2004). https://doi.org/10.1038/sj.jea.7500393

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/sj.jea.7500393

Keywords

This article is cited by

Search

Quick links