Sage Journals: Discover world-class research

Abstract

Hypothetical scenarios were used to assess the influence of the sensitivity of the study topic, payments, and study methods on research ethics committee (HREC) members’ approval of social research studies involving children. A total of 183 Australian HREC members completed an online survey. The higher the perceived sensitivity of the study topic, the less likely the study would be approved by an HREC member. HREC members were most likely to approve each of the hypothetical studies if no payment was offered. Payment was the most common reason for not approving the low risk studies, while risks were the most common reasons for not approving the more sensitive studies. Face-to-face interviews conducted at home with children elicited substantially higher rates of approval from HREC members with more sensitive study topics. Both HRECs and researchers may benefit from additional guidance on managing risks and payments for children and young people in research.

Keywords

behavioral social science research children and adolescent/pediatrics decision making capacity/surrogate decision makers IRB performance/quality/assessment/evaluation justice/participant selection/inclusion/recruitment parental consent/child assent payment for research participation research ethics committee/IRB review risks benefits and burdens of research/ beneficence and nonMaleficence vignette studies

Get full access to this article

View all access options for this article.

References

Abbott

Grady

. (2011). A systematic review of the empirical literature evaluating IRBs: what we know and what we still need to learn. Journal of Empirical Research on Human Research Ethics, 6(1), 3–19. https://doi.org/10.1525/jer.2011.6.1.3

Bagley

S. J.

Reynolds

W. W.

Nelson

R. M

. (2007). Is a “wage-payment” model for research participation appropriate for children? Pediatrics, 119(1), 46–51. https://doi.org/10.1542/peds.2006-1813

Bower

Brueton

Gamble

Treweek

Smith

C. T.

Young

Williamson

. (2014). Interventions to improve recruitment and retention in clinical trials: A survey and workshop to assess current practice and future priorities. Trials, 15, 399. https://doi.org/10.1186/1745-6215-15-399

Dickert

Grady

. (1999). What’s the price of a research subject? Approaches to payment for research participation. New England Journal of Medicine, 341(3), 198–203. https://doi.org/10.1056/NEJM199907153410312

Ellonen

Pösö

. (2011). Children’s experiences of completing a computer-based violence survey: ethical implications. Children & Society, 25(6), 470–481. https://doi.org/10.1111/j.1099-0860.2010.00292.x

Finkelhor

Hamby

Turner

Walsh

(2012). Ethical issues in surveys about children’s exposure to violence and sexual abuse. In Cuevas

Rennison

(Eds.), Wiley handbook on the psychology of violence. (pp. 24–48) Wiley-Blackwell Publishers.

Friesen

Yusof

A. N. M.

Sheehan

. (2019). Should the decisions of institutional review boards be consistent? Ethics and Human Research, 41(4), 2–14. https://doi.org/10.1002/eahr.500022

Gelinas

Largent

E. A.

Cohen

I. G.

Kornetsky

Bierer

B. E.

Fernandez Lynch

. (2018). A framework for ethical payment to research participants. New England Journal of Medicine, 378(8), 766–771. https://doi.org/10.1056/NEJMsb1710591

Guta

Nixon

S. A.

Wilson

M. G

. (2013). Resisting the seduction of “ethics creep”: using foucault to surface complexity and contradiction in research ethics review. Social Science & Medicine, 98, 301–310. https://doi.org/10.1016/j.socscimed.2012.09.019

10.

Harger

Quintela

(2017). The IRB as gatekeeper: effects on research with children and youth. In Researching children and youth: methodological issues, strategies, and innovations (pp. 11–33). Published online: 13 Mar 2017. https://www.emerald.com/insight/content/doi/10.1108/S1537-466120180000022002/full/html

11.

Hildebrand

Maycock

Comfort

Burns

Adams

Howat

(2015). Ethical considerations in investigating youth alcohol norms and behaviours: A case for mature minor consent (Vol. 26). Copyright Agency.

12.

Hill

. (2015). ‘Don’t make us talk!’: listening to and learning from children and young people living with parental alcohol problems. Children & Society, 29(5), 344–354. https://doi.org/10.1111/chso.12064

13.

Jennings

C. G.

MacDonald

T. M.

Wei

Brown

M. J.

McConnachie

Mackenzie

I. S

. (2015). Does offering an incentive payment improve recruitment to clinical trials and increase the proportion of socially deprived and elderly participants? Trials, 16: 80. https://doi.org/10.1186/s13063-015-0582-8

14.

Kincaid

J. P.

Fishburne

R. P. J.

Rogers

R. L.

Chissom

B. S.

(1975). Derivation of new readability formulas (automated readability index, fog count and flesch reading ease formula) for navy enlisted personnel. Retrieved from http://stars.library.ucf.edu/istlibrary/56

15.

Largent

Lynch

H. F

. (2017). Paying research participants: The outsized influence of “undue influence”. IRB Ethics & Human Research, 39(4), 1–9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5640154/

16.

Lynch

H. F

. (2018). Opening closed doors: promoting IRB transparency. The Journal of Law, Medicine & Ethics, 46(1), 145–158. https://doi.org/10.1177/1073110518766028

17.

Macapagal

Coventry

Arbeit

M. R.

Fisher

C. B.

Mustanski

. (2017). “I won’t out myself just to do a survey”: sexual and gender minority adolescents’ perspectives on the risks and benefits of sex research. Archives of Sexual Behavior, 46(5), 1393–1409. https://doi.org/10.1007/s10508-016-0784-5

18.

Moore

McArthur

Graham

Chalmers

Powell

M. A.

Taplin

. (2021). Children and young people’s decision-making in social research about sensitive issues. Children’s Geographies, 19(6), 689–704. https://doi.org/10.1080/14733285.2020.1866749

19.

Moore

Noble-Carr

McArthur

. (2016). Changing things for the better: The use of children and young people’s reference groups in social research. International Journal of Social Research Methodology, 19(2), 241–256. https://doi.org/10.1080/13645579.2014.989640

20.

Murray

. (2005). Children and young people’s participation and non-participation in research. Adoption & Fostering, 29(1), 57–66. https://doi.org/10.1177/030857590502900107

21.

Navratil

McCauley

H. L.

Marmol

Barone

Miller

. (2015). Involving youth voices in research protocol reviews. American Journal of Bioethics, 15(11), 33–34. https://doi.org/10.1080/15265161.2015.1088979

22.

NHMRC. (2007, updated 2018). The national statement on ethical conduct in human research. Australia Retrieved from https://nhmrc.gov.au/about-us/publications/national-statement-ethical-conduct-human-research-2007-updated-2018

23.

Page

S. A.

Nyeboer

. (2017). Improving the process of research ethics review. Research Integrity and Peer Review, 2(1), 14. https://doi.org/10.1186/s41073-017-0038-7

24.

Permuth-Wey

Borenstein

A. R

. (2009). Financial remuneration for clinical and behavioral research participation: ethical and practical considerations. Annals of Epidemiology, 19(4), 280–285. https://doi.org/10.1016/j.annepidem.2009.01.004

25.

Powell

M. A.

Graham

McArthur

Moore

Chalmers

Taplin

. (2020). Children’s participation in research on sensitive topics: Addressing concerns of decision-makers. Children’s Geographies, 18(3), 325–338. https://doi.org/10.1080/14733285.2019.1639623

26.

Powell

M. A.

McArthur

Chalmers

Graham

Moore

Spriggs

Taplin

. (2018). Sensitive topics in social research involving children. International Journal of Social Research Methodology, 21(6), 647–660. https://doi.org/10.1080/13645579.2018.1462882

27.

Rice

Broome

M. E

. (2004). Incentives for children in research. Journal of Nursing Scholarship, 36(2), 167–172. https://doi.org/10.1111/j.1547-5069.2004.04030.x

28.

Schmidt

C. O.

Kohlmann

. (2008). When to use the odds ratio or the relative risk? International Journal of Public Health, 53, 165–167. https://doi.org/10.1007/s00038-008-7068-3

29.

Sikes

Piper

. (2010). Ethical research, academic freedom and the role of ethics committees and review procedures in educational research. International Journal of Research & Method in Education, 33(3), 205–213. https://doi.org/10.1080/1743727X.2010.511838

30.

Singer

Couper

M. P

. (2008). Do incentives exert undue influence on survey participation? Experimental evidence. Journal of Empirical Research on Human Research Ethics, 3(3), 49–56. https://doi.org/10.1525/jer.2008.3.3.49

31.

Taplin

Chalmers

Brown

Moore

Graham

McArthur

. (2022). Human research ethics committee experiences and views about children’s participation in research: results from the MESSI study. Journal of Empirical Research on Human Research Ethics, 17 (1–2), 70–83. https://doi.org/10.1177/15562646211048294

32.

Taplin

Chalmers

Hoban

McArthur

Moore

Graham

. (2019). Children in social research: Do higher payments encourage participation in riskier studies? Journal of Empirical Research on Human Research Ethics, 14(2), 126–140. https://doi.org/10.1177/1556264619826796

33.

Ulrich

Ratcliffe

(2007). Hypothetical vignettes in empirical bioethics research. In Empirical methods for bioethics: A primer (Vol. 11, pp. 161–181). Emerald Group Publishing Limited.

34.

Wendler

Rackoff

J. E.

Emanuel

E. J.

Grady

. (2002). The ethics of paying for children’s participation in research. The Journal of Pediatrics, 141(2), 166–171. https://doi.org/10.1067/mpd.2002.124381

35.

Zou

. (2004). A modified Poisson regression approach to prospective studies with binary data. American Journal of Epidemiology, 159(7), 702–706. https://doi.org/10.1093/aje/kwh090

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.02 MB

How do Research Ethics Committee Members Respond to Hypothetical Studies with Children? Results from the MESSI Study

Abstract

Keywords

Get full access to this article

References

Supplementary Material