Spinning a Stem Cell Ethics Web

Abstract

The goal of this study was to provide an ethics education resource for trainees and researchers in the Canadian Stem Cell Network that would address the multiple ethical challenges in stem cell research including accountability in and for research across its multiple dimensions. The website was built using a bottom-up type approach based on an ethics needs assessment in combination with a top-down expert-driven component. There have been 3,615 visitors to the website since it was launched in July, 2011. The ongoing rate of returning visitors (20%) indicates that the website is becoming a valuable tool used multiple times.

Keywords:

• ethics education
• mixed methods
• online research
• stem cells

ACKNOWLEDGMENTS

The authors would like to thank team members Nina Preto, Jen Bailey, Cathy Schuppli, Darquise Lafrenière, and research support staff members Morgan Reid, Liz Wilcox, and James Benoit for their work on this project over the last few years. This study is part of a larger Canadian Stem Cell Network research initiative entitled “The Stem Cell Research Environment: Drawing the Evidence and Experience Together” led by Tim Caulfield at the University of Alberta's Health Law Institute.

Notes

1. For more on scientific misbehavior and research integrity issues, see Master, 2012.

2. ELSI stands for the ethical, legal, and social implications of scientific research.

3. The benefits of online ELSI resources in scientifically complex areas are discussed in Longstaff et al. (2012) and Hawkins et al. (in press).

4. This study underwent ethics review at the University of British Columbia (ID # H08-01977).

5. SCN is a Network of Centres of Excellence in Canada. For more information on the Network please visit http://www.stemcellnetwork.ca/

6. Please see http://www.upenn.edu/research/compliance_training/responsible_conduct_of_research/

7. Please see http://www.ors.ubc.ca/contents/animal-care-training

8. Please see http://tcps2core.ca/welcome

9. Please see http://www.stemcelltalksottawa.ca/about/

10. The focus group portion of this research had a total of 26 participants.

11. One Canadian resource available to stem cell researchers at this time were the Ethics White Papers available online on the SCN website at http://www.stemcellnetwork.ca/index.php?page=ethics&hl=eng

12. Due to the fact that we were asking respondents about the ethical concerns they have about SC research and the very sensitive nature their responses, the SCN agreed to send out advertisements about the survey as well as follow-up reminders. The survey was anonymous and confidential.

13. A few participants were research ethics or governance experts and may not have been members of the SCN. In addition, all participants completed the survey in English.

14. It is important to note that all results presented in the figures of the forthcoming sections are shown in percentages unless otherwise noted. Totals may not equal 100% due to rounding error.

15. Ontario and Québec.

16. Western Canada (BC and Alberta) and Northern Canada (Yukon Territory, Northwest Territories, Nunavut).

17. Please note that these demographics represent the sample of participants who both partially and totally completed the survey. The participant group also included undergraduate SCN students (4%), Lab managers (6%), principle investigators (7%), REB or ACC members who review SC research (5%), those involved in SC governance (2%), and ELSI SC researchers (8%). The remaining participants chose not to identify their role in the SC research environment (18%).

18. REB stands for Research Ethics Board while ACC stands for Animal Care Committee. The Stem Cell Oversight Committee (or SCOC) is a Canadian governance body which reviews research studies that use human pluripotent stem cells as well as human stem cell research that is ethically sensitive to make sure that this research is consistent with the 2010 Updated Guidelines for Human Pluripotent Stem Cell Research developed by the Canadian Institutes of Health Research (CIHR).

19. The website was designed by northStudio Inc. in Victoria, British Columbia.

20. WYSIWYG is an acronym that stands for What You See Is What You Get.

21. To view the website please visit http://www.stemcellethics

22. In our first poll, viewers were asked if they agreed that SC research would lead to new therapies in the next 5 years. Of those who responded, 48% agreed, 21% disagreed, and 31% stated that they were not sure. It should be noted however that the results of the website polls are not representative or scientific.

23. Names of Committee members can be found at http://www.stemcellethics.ca/about-us

24. The authors of this study also have an obvious bias towards the importance of ethics to the field of SC science due to their own expertise in ethics and research orientation.