Researching Sexual Healthcare for Women with Problematic Drug Use: Returning to Ethical Principles in Study Processes

  • Natalie L. EdelmanEmail author


This chapter illustrates how privileging of the ethical principle of non-maleficence may exclude the most vulnerable from research participation. ‘Patient and public involvement’ is presented as a powerful tool for developing ways of enabling participation, and the notion of ‘lay women’ as distinct from ‘researcher women’ is discussed. These issues are articulated through the example of a mixed-methods study in the UK. Women with problematic drug use were identified as study collaborators and consulted in meetings and via postal review of documents. The chapter also highlights ways of addressing ethical concerns that arise after approval and describes ethical subtleties involved in respecting the rights of participants and study collaborators to speak about painful subjects, whilst ensuring their well-being and maintaining boundaries.


  1. Baker, B. L., & Benton, C. L. (1994). The ethics of feminist self-disclosure. In K. Carter & M. Presnell (Eds.), Interpretive approaches to interpersonal communication. Albany: State University of New York Press.Google Scholar
  2. Beauchamp, T. L., & Childress, J. F. (2001). Principles of biomedical ethics. New York: Oxford University Press.Google Scholar
  3. Edelman, N., & Barron, D. (2015). Evaluation of public involvement in research: Time for a major re-think? Journal of Health Services Research and Policy, 21(3), 209–211. CrossRefPubMedPubMedCentralGoogle Scholar
  4. Edelman, N., Patel, H., Glasper, A., & Bogen-Johnston, L. (2013). Understanding barriers to sexual health service access among substance-misusing women on the South East coast of England. Journal of Family Planning and Reproductive Health Care, 39(4), 258–263.CrossRefGoogle Scholar
  5. Ettorre, E. (2007). Revisioning women and drug use: Gender, power and the body. London: Palgrave Macmillan.CrossRefGoogle Scholar
  6. Fenton, K. A., Johnson, A. M., McManus, S., & Erens, B. (2001). Measuring sexual behaviour: Methodological challenges in survey research. Sexually Transmitted Infections, 77(2), 84–92. CrossRefPubMedPubMedCentralGoogle Scholar
  7. INVOLVE. (2012). Briefing notes for researchers: Involving the public in NHS, public health and social care research. Eastleigh: INVOLVE.Google Scholar
  8. INVOLVE. (2017). Experts by experience. Retrieved May 2, 2017, from
  9. Levine, C., Faden, R., Grady, C., Hammerschmidt, D., Eckenwiler, L., & Sugarman, J. (2004). The limitations of “vulnerability” as a protection for human research participants. Americal Journal of Bioethics, 4(3), 44–49. CrossRefGoogle Scholar
  10. Lincoln, A. K., Liebschutz, J. M., Chernoff, M., Nguyen, D., & Amaro, H. (2006). Brief screening for co-occurring disorders among women entering substance abuse treatment. Substance Abuse Treatment, Prevention, and Policy, 1(1), 26. CrossRefGoogle Scholar
  11. Nathanson, V. (2013). Revising the declaration of Helsinki. BMJ: British Medical Journal, 346. doi: CrossRefPubMedGoogle Scholar
  12. Oakley, A. (1993). Essays on women, medicine and health. Edinburgh: Edinburgh University Press.Google Scholar
  13. Page, K. (2012). The four principles: Can they be measured and do they predict ethical decision making? BMC Medical Ethics, 13, 10. CrossRefPubMedPubMedCentralGoogle Scholar
  14. Reinharz, S., & Davidman, L. (1992). Feminist methods in social research. Oxford: Oxford University Press.Google Scholar
  15. Shirkey, H. (1999). Editorial Comment: Therapeutic Orphans. Pediatrics, 104(Supplement 3), 583–584.PubMedGoogle Scholar
  16. Terence Higgins Trust. (2015). Problematic drug use. Retrieved May 8, 2017, from
  17. World Medical Association. (2013). World medical association declaration of Helsinki: Ethical principles for medical research involving human subjects. Journal of the American Medical Association, 310(20), 2191–2194. CrossRefGoogle Scholar

Copyright information

© The Author(s) 2018

Authors and Affiliations

  1. 1.University of BrightonBrightonUK

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