423
Views
6
CrossRef citations to date
0
Altmetric
Articles

First Do No Harm: Ethical Concerns of Health Researchers That Discourage the Sharing of Results With Research Participants

, , , , , , & show all

References

  • Atz, T. W., R. M. Sade, and P. H. Williams. 2014. Perceptions of academic health science research center personnel regarding informed consent processes and therapeutic misconception. Accountability in Research 21 (5):300–14. doi: 10.1080/08989621.2013.861328.
  • Baylor, A., C. Muzoora, M. Bwana, A. Kembabazi, J. E. Haberer, L. T. Matthews, A. C. Tsai, P. W. Hunt, J. N. Martin, and D. R. Bangsberg. 2013. Dissemination of research findings to research participants living with HIV in rural Uganda: Challenges and rewards. PLOS Medicine 10 (3):e1001397. doi: 10.1371/journal.pmed.1001397.
  • Carpenter, D., V. Nieva, T. Albaghal, 2005. and, and J. Sorra. Development of a planning tool to guide research dissemination. In Advances in Patient Safety: From Research to Implementation (Volume 4: Programs, Tools, and Products), ed. K. Henriksen, J. B. Battles, E. S. Marks, and D. I. Lewin, 83–91. Rockville, MD: Agency for Healthcare Research and Quality.
  • Centers for Disease Control and Prevention. 2018. Prevention Research Centers. Accessed February 15. https://www.cdc.gov/prc/index.htm.
  • Chen, P. G., N. Diaz, G. Lucas, and M. S. Rosenthal. 2010. Dissemination of results in community-based participatory research. American Journal of Preventive Medicine 39 (4):372–8. doi: 10.1016/j.amepre.2010.05.021.
  • Christopher, P. P., P. S. Appelbaum, D. Truong, K. Albert, L. Maranda, and C. Lidz. 2017. Reducing therapeutic misconception: A randomized intervention trial in hypothetical clinical trials. PLoS One 12 (9):e0184224. doi: 10.1371/journal.pone.0184224.
  • Clift, K. E., C. M. E. Halverson, A. S. Fiksdal, A. Kumbamu, R. R. Sharp, and J. B. McCormick. 2015. Patients’ views on incidental findings from clinical exome sequencing. Applied & Translational Genomics 4:38–43. doi: 10.1016/j.atg.2015.02.005.
  • Cox, K., N. Moghaddam, L. Bird, and R. Elkan. 2011. Feedback of trial results to participants: A survey of clinicians’ and patients’ attitudes and experiences. European Journal of Oncology Nursing 15 (2):124–9. doi: 10.1016/j.ejon.2010.06.009.
  • Curran, D., M. Kekewich, and T. Foreman. 2018. Examining the use of consent forms to promote dissemination of research results to participants. Research Ethics 15 (1):1–28. doi: 10.1177/1747016118798877.
  • Dixon-Woods, M., C. Jackson, K. C. Windridge, and S. Kenyon. 2006. Receiving a summary of the results of a trial: Qualitative study of participants’ views. BMJ 332 (7535):206–10. doi: 10.1136/bmj.38675.677963.3A.
  • Fernandez, C. V., J. Gao, C. Strahlendorf, A. Moghrabi, R. D. Pentz, R. C. Barfield, J. N. Baker, D. Santor, C. Weijer, and E. Kodish. 2009. Providing research results to participants: Attitudes and needs of adolescents and parents of children with cancer. Journal of Clinical Oncology 27 (6):878–83. doi: 10.1200/JCO.2008.18.5223.
  • Fernandez, C. V., E. Kodish, S. Shurin, and C. Weijer. 2003. Offering to return results to research participants: Attitudes and needs of principal investigators in the Children’s Oncology Group. Journal of Pediatric Hematology/Oncology 25 (9):704–8. doi: 10.1097/00043426-200309000-00006.
  • Fernandez, C. V., C. Skedgel, and C. Weijer. 2004. Considerations and costs of disclosing study findings to research participants. Canadian Medical Association Journal 170 (9):1417–9. doi: 10.1503/cmaj.1031668.
  • Harris, P. A., R. Taylor, R. Thielke, J. Payne, N. Gonzalez, and J. G. Conde. 2009. Research electronic data capture (REDCap)–a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics 42 (2):377–81. doi: 10.1016/j.jbi.2008.08.010.
  • Henderson, G. E., L. R. Churchill, A. M. Davis, M. M. Easter, C. Grady, S. Joffe, N. Kass, N. M. King, C. W. Lidz, F. G. Miller, et al. 2007. Clinical trials and medical care: Defining the therapeutic misconception. PLoS Medicine 4 (11):e324. doi: 10.1371/journal.pmed.0040324.
  • King, N., C. Cassell, and G. Symon. 2004. Using templates in the thematic analysis of text. In Essential guide to qualitative methods in organizational research, ed. C Cassell and G Symon, 256–70. Thousand Oaks, CA: Sage Publications.
  • Knoppers, B. M., Y. Joly, J. Simard, and F. Durocher. 2006. The emergence of an ethical duty to disclose genetic research results: International perspectives. European Journal of Human Genetics 14 (11):1170–8. doi: 10.1038/sj.ejhg.5201690.
  • Lidz, C. W., K. Albert, P. Appelbaum, L. B. Dunn, E. Overton, and E. Pivovarova. 2015. Why is therapeutic misconception so prevalent? Cambridge Quarterly of Healthcare Ethics 24 (2):231–41. doi: 10.1017/S096318011400053X.
  • Long, C. R., R. S. Purvis, E. Flood-Grady, K. S. Kimminau, R. L. Rhyne, M. R. Burge, M. K. Stewart, A. J. Jenkins, L. P. James, and P. A. McElfish. 2019. Health researchers’ experiences, perceptions, and barriers related to sharing study results with participants. Health Research Policy and Systems 17 (1):1–11. doi: 10.1186/s12961-019-0422-5.
  • Long, C. R., M. K. Stewart, T. V. Cunningham, T. S. Warmack, and P. A. McElfish. 2016. Health research participants’ preferences for receiving research results. Clinical Trials: Journal of the Society for Clinical Trials 13 (6):582–91. doi: 10.1177/1740774516665598.
  • Markman, M. 2006. Providing research participants with findings from completed cancer-related clinical trials: Not quite as simple as it sounds. Cancer 106 (7):1421–4. doi: 10.1002/cncr.21757.
  • McElfish, P. A., R. S. Purvis, and C. R. Long. 2018. Researchers’ experiences with and perceptions of returning results to participants: Study protocol. Contemporary Clinical Trials Communications 11:95–8. doi: 10.1016/j.conctc.2018.06.005.
  • Middleton, A., K. I. Morley, E. Bragin, H. V. Firth, M. E. Hurles, C. F. Wright, and M. Parker. 2016. Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research. European Journal of Human Genetics 24 (1):21–9. doi: 10.1038/ejhg.2015.58.
  • Miller, F. A., R. Christensen, M. Giacomini, and J. S. Robert. 2008. Duty to disclose what? querying the putative obligation to return research results to participants. Journal of Medical Ethics 34 (3):210–3. doi: 10.1136/jme.2006.020289.
  • Nadin, S., and C. Cassell. 2004. Using data matrices. In Essential guide to qualitative methods in organizational research, ed. C Cassell and G Symon, 271–87. Thousand Oaks, CA: Sage Publications.
  • National Institutes of Health National Center for Advancing Translational Sciences. 2018. Clinical and Translational Science Award (CTSA). Accessed February 15, https://ncats.nih.gov/ctsa/about.
  • Novack, D. H., R. Plumer, R. L. Smith, H. Ochitill, G. R. Morrow, and J. M. Bennett. 1979. Changes in physicians’ attitudes toward telling the cancer patient. Jama: The Journal of the American Medical Association 241 (9):897–900. doi: 10.1001/jama.1979.03290350017012.
  • Partridge, A. H., N. Hackett, E. Blood, R. Gelman, S. Joffe, S. Bauer-Wu, K. Knudsen, K. Emmons, D. Collyar, R. L. Schilsky, et al. 2004. Oncology physician and nurse practices and attitudes regarding offering clinical trial results to study participants. JNCI Journal of the National Cancer Institute 96 (8):629–32. doi: 10.1093/jnci/djh096.
  • Partridge, A. H., and E. P. Winer. 2002. Informing clinical trial participants about study results. JAMA 288 (3):363–5. doi: 10.1001/jama.288.3.363.
  • Partridge, A. H., J. S. Wong, K. Knudsen, R. Gelman, E. Sampson, M. Gadd, K. L. Bishop, J. R. Harris, and E. P. Winer. 2005. Offering participants results of a clinical trial: Sharing results of a negative study. The Lancet 365 (9463):963–4. doi: 10.1016/S0140-6736(05)71085-0.
  • Patient-Centered Outcomes Research Institute. 2018. What We Mean by Engagement. Accessed October 15, 2018. http://www.pcori.org/funding-opportunities/what-we-mean-engagement.
  • Purvis, R. S., T. H. Abraham, C. R. Long, M. K. Stewart, T. S. Warmack, and P. A. McElfish. 2017. Qualitative study of participants’ perceptions and preferences regarding research dissemination. AJOB Empirical Bioethics 8 (2):69–74. doi: 10.1080/23294515.2017.1310146.
  • Rigby, H., and C. V. Fernandez. 2005. Providing research results to study participants: Support versus practice of researchers presenting at the American Society of Hematology annual meeting. Blood 106 (4):1199–202. doi: 10.1182/blood-2005-02-0556.
  • Shalowitz, D. I., and F. G. Miller. 2005. Disclosing individual results of clinical research: Implications of respect for participants. JAMA 294 (6):737–40. doi: 10.1001/jama.294.6.737.
  • Shalowitz, D. I., and F. G. Miller. 2008. Communicating the results of clinical research to participants: Attitudes, practices, and future directions. PLOS Medicine 5 (5):e91. doi: 10.1371/journal.pmed.0050091.
  • Shalowitz, D. I., and F. G. Miller. 2008. The search for clarity in communicating research results to study participants. Journal of Medical Ethics 34 (9):e17–e17. doi: 10.1136/jme.2008.025122.
  • Trinidad, S. B., E. J. Ludman, S. Hopkins, R. D. James, T. J. Hoeft, A. Kinegak, H. Lupie, R. Kinegak, B. B. Boyer, and W. Burke. 2015. Community dissemination and genetic research: Moving beyond results reporting. Journal of Medical Genetics Part A, 167 (7), 1542–50. doi: 10.1002/ajmg.a.37028..
  • Wilson, P. M., M. Petticrew, M. W. Calnan, and I. Nazareth. 2010. Does dissemination extend beyond publication: A survey of a cross section of public funded research in the UK. Implementation Science 5:61. doi: 10.1186/1748-5908-5-61.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.