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.

  • Original Article
  • Published:

Attitudes of Health-Care Providers towards Research with Newborn Babies

Abstract

CONTEXT: By providing information and possibly shaping parents' preferences, health-care providers are thought to play a critical role in parental decisions to enroll their infants in research. Yet, little is known about health-care providers' beliefs about research with newborns. Previous studies suggest that parents and health-care providers are often at odds regarding attitudes towards research.

OBJECTIVE: To examine the attitudes of health-care providers concerning the acceptability of research with newborn babies and the degree of research-related risk to which they would be willing to expose their own infant. These findings were compared with a previous study of parental attitudes.

DESIGN, SETTING AND PARTICIPANTS: A survey (pretested questionnaire with 20 scaled items and five case scenarios) of 50 doctors and 64 nurses conducted in a large tertiary care center in western Canada.

RESULTS: Study limitations were a response rate of 64.5% among nurses but only 22% among physicians. Both doctors and nurses were strongly supportive of research with newborns, but nurses were more averse to exposing infants to risk. Only 76.0% of nurses, compared to 92.2% of physicians, agreed that informed consent should be sought for all forms of research. When results were compared with parental perceptions, health-care providers were more likely to believe that research should be conducted for the good of all babies. Parents were generally less aware of the existence of an approval process for research in general. In responding to hypothetical scenarios with risk and direct benefit, parents were less willing to enroll their infants than were health-care providers. Approximately 30% of both groups would be willing to enroll their infants in a study involving moderate risk and no direct benefit.

CONCLUSIONS: Views of nurses, physicians, and parents regarding research with newborns are different. Overall, there is support for research; however, nurses are more likely to never enroll their own baby and enroll babies into minor studies without consent.

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

Access options

Buy this article

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

Figure 1
Figure 2

Similar content being viewed by others

References

  1. Ferguson PK . Patients' perceptions of information provided in clinical trials. J Med Ethics 2002;28:45–48.

    Article  CAS  Google Scholar 

  2. Mason S, Allmark P . Obtaining informed consent to neonatal randomised controlled trials: interviews with parents and clinicians in the euricon study. Lancet 2000;356:2045–2051.

    Article  CAS  Google Scholar 

  3. Liaschenko J, Underwood SM . Children in research–fathers in cancer research: meanings and reasons for participation. J Fam Nurs 2001;7:71–91.

    Article  Google Scholar 

  4. Moore S . A need to try everything: patient participation in phase I trials. J Adv Nurse 2001;33:738–747.

    Article  CAS  Google Scholar 

  5. Roberts LW, Warner T, Brody JL . Perspectives of patients with schizophrenia and psychiatrists regarding ethically important aspects of research participation. Am J Psychiatry 2000;157:67–74.

    Article  CAS  Google Scholar 

  6. Schaffer D, Shaw GM . Mothers' motivations to participate in a pregnancy health survey. Public Health Reports 1992;107:731–733.

    CAS  PubMed  PubMed Central  Google Scholar 

  7. Zupancic JAF, Gillie P, Streiner DL, Watts JL, Schmidt B . Determinants of parental authorization for involvement of newborn infants in clinical trials. Pediatrics (serial online) 1997;99:e6 Available from URL: http://www.pediatrics.org.cgi/content/full/99/1/e6.

    CAS  Google Scholar 

  8. Singhal N, Oberle K, Burgess E, Huber-Okrainer J . Parents' perceptions of research with newborns. J Perinatol 2002;22:57–63.

    Article  Google Scholar 

  9. Slevin ML, Stubbs L, Plant HJ, et al. Attitudes towards chemotherapy: comparing views of patients with cancer with those of doctors, nurses and the general public. BMJ 1990;300:1458–1460.

    Article  CAS  Google Scholar 

  10. Cheng JD, Hitt J, Koczwara B, et al. The impact of quality of life on patient expectations regarding phase I clinical trials. J Clin Oncol 2000;18:421–428.

    Article  CAS  Google Scholar 

  11. Schutter KM, Burnett CB . Factors that influence a patient's decision to participate in a phase I cancer clinical trial. Oncol Nurs Forum 2000;27:1435–1438.

    Google Scholar 

  12. Simon C, Eder M, Raiz P, Zyzanski S, Pentz R, Kodish ED . Informed consent for pediatric leukemia research: clinicians' perspectives. Cancer 2001;92:691–700.

    Article  CAS  Google Scholar 

  13. Burnett CB, Koczwara B, Pixley L, Blumenson LE, Hwang YT, Meropol NJ . Nurses' attitudes towards clinical trials at a comprehensive cancer center. Oncol Nurs Forum 2001;28:1187–1192.

    CAS  PubMed  Google Scholar 

  14. Oberle K, Singhal N, Huber J, Burgess E . Development of an instrument to investigate parents' perceptions of research with newborn babies. Nurs Ethics 2000;7:327–337.

    Article  CAS  Google Scholar 

  15. Edwards SJL, Lilford RJ, Hewison J . The ethics of randomised controlled trials from the perspectives of patients, the public and healthcare professionals. BMJ 1998;317:1209–1212.

    Article  CAS  Google Scholar 

  16. Burgess E, Singhal N, Amin H, McMillan D, Devrome H . Consent for clinical research in the neonatal intensive care unit — a retrospective survey and a prospective study. ARCH DIS CHILD 2003;88:F280–F286.

    Article  CAS  Google Scholar 

  17. Cox K, Avis M . Psychosocial aspects of participation in early cancer drug trials. Can Nurs. 1996;19:177–186.

    Article  CAS  Google Scholar 

  18. Hayman RM, Taylor BJ, Peart NS, Galland BC, Sayers RM . Participation in research: informed consent, motivation and influence. J Pediatr Child Health 2001;37:51–54.

    Article  CAS  Google Scholar 

  19. Fry C, Dwyer R . For love or money? Why injecting drug users participate in research. Addiction 2001;96:1319–1325.

    Article  CAS  Google Scholar 

Download references

Acknowledgements

We are grateful to the University of Calgary and the Calgary Health Region for support of this project, and to Michael Fox for collecting the data.

Author information

Authors and Affiliations

Authors

Appendix A

Appendix A

Questionnaire B — 5 scenarios are given in Table A1.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Singhal, N., Oberle, K., Darwish, A. et al. Attitudes of Health-Care Providers towards Research with Newborn Babies. J Perinatol 24, 775–782 (2004). https://doi.org/10.1038/sj.jp.7211171

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/sj.jp.7211171

This article is cited by

Search

Quick links