3,052
Views
3
CrossRef citations to date
0
Altmetric
Original Articles

National Human Research Ethics: A Preliminary Comparative Case Study of Germany, Great Britain, Romania, and Sweden

, , , , , , , & show all

REFERENCES

  • Afkhami, R. (2012). Ethnicity: Introductory user guide. Colchester: Economic and social data service. Colchester, UK: University of Essex.
  • Ahsan, M. (2009). The potential and challenges of rights-based research with children and young people: Experiences from Bangladesh. Children’s Geographies, 7, 391–403. doi:10.1080/14733280903234451
  • Alahmad, G., Al-Jumah, M., & Dierickx, K. (2012). Review of national research ethics regulations and guidelines in middle Eastern Arab countries. BMC Medical Ethics, 13, 34. doi:10.1186/1472-6939-13-34
  • Allmark, P., & Mason, S. (2006). Improving the quality of consent to randomised controlled trials by using continuous consent and clinician training in the consent process. Journal of Medical Ethics, 32, 439–443. doi:10.1136/jme.2005.013722
  • Axelin, A., & Salanterä, S. (2008). Ethics in neonatal pain research. Nursing Ethics, 15, 492–499. doi:10.1177/0969733007086017
  • Balen, R., Blyth, E., Calabretto, H., Fraser, C., Horrocks, C., & Manby, M. (2006). Involving children in health and social research ‘human becomings’ or ‘active beings’? Childhood, 13, 29–48. doi:10.1177/0907568206059962
  • Benatar, S. R. (2004). Towards progress in resolving dilemmas in international research ethics. The Journal of Law, Medicine & Ethics, 32, 574–582. doi:10.1111/jlme.2004.32.issue-4
  • Beyrer, C., & Kass, N. E. (2002). Human rights, politics, and reviews of research ethics. The Lancet, 360, 246–251. doi:10.1016/S0140-6736(02)09465-5
  • Blake, V., Joffe, S., & Kodish, E. (2011). Harmonization of ethics policies in pediatric research. The Journal of Law, Medicine & Ethics, 39, 70–78. doi:10.1111/j.1748-720X.2011.00551.x
  • Bogolub, E. B., & Thomas, N. (2005). Parental Consent and the ethics of research with foster children: Beginning a cross-cultural dialogue. Qualitative Social Work, 4, 271–292. doi:10.1177/1473325005055592
  • British Psychological Society. (2009). Code of ethics and conduct. Leicester, UK: Author.
  • British Society of Criminology. (2006). Code of ethics. London, UK: Author.
  • Calain, P., Fiore, N., Poncin, M., & Hurst, S. A. (2009). Research ethics and international epidemic response: The case of Ebola and Marburg Hemorrhagic fevers. Public Health Ethics, 2, 7–29. doi:10.1093/phe/phn037
  • Carrington, M. J., Neville, B. A., & Whitwell, G. J. (2014). Lost in translation: Exploring the ethical consumer intention–behavior gap. Journal of Business Research, 67, 2759–2767. doi:10.1016/j.jbusres.2012.09.022
  • Cleaton-Jones, P., & Wassenaar, D. (2010). Protection of human participants in health research: A comparison of some US federal regulations and South African research ethics guidelines. South African Medical Journal, 100, 710–716.
  • Creed-Kanashiro, H., Oré, B., Scurrah, M., Gil, A., & Penny, M. (2005). Conducting research in developing countries: Experiences of the informed consent process from community studies in Peru. The Journal of Nutrition, 135, 925–928.
  • Denny, C. C., & Grady, C. (2007). Clinical research with economically disadvantaged populations. Journal of Medical Ethics, 33, 382–385. doi:10.1136/jme.2006.017681
  • Edejer, T. T. T. (1999). North–South research partnerships: The ethics of carrying out research in developing countries. British Medical Journal, 319, 438. doi:10.1136/bmj.319.7207.438
  • Edwards, J. L., Ashcroft, R., & Kirchin, S. (2004). Research ethics committees: Differences and moral judgement. Bioethics, 18, 408–427. doi:10.1111/biot.2004.18.issue-5
  • Elger, B. S., & Caplan, A. L. (2006). Consent and anonymization in research involving biobanks: Differing terms and norms present serious barriers to an international framework. EMBO Reports, 7, 661–666. doi:10.1038/sj.embor.7400740
  • Emanuel, E. J., Wendler, D., & Grady, C. (2000). What makes clinical research ethical? Journal of the American Medical Association, 283, 2701–2711. doi:10.1001/jama.283.20.2701
  • Emanuel, E. J., Wendler, D., Killen, J., & Grady, C. (2004). What makes clinical research in developing countries ethical? The benchmarks of ethical research. The Journal of Infectious Diseases, 189, 930–937. doi:10.1086/jid.2004.189.issue-5
  • Emmel, N., Hughes, K., Greenhalgh, J., & Sales, A. (2007). Accessing socially excluded people ó trust and the gatekeeper in the researcher-participant relationship. Sociological Research Online, 12(2). doi:10.5153/sro.1512
  • Ensign, J. (2003). Ethical issues in qualitative health research with homeless youths. Journal of Advanced Nursing, 43, 43–50. doi:10.1046/j.1365-2648.2003.02671.x
  • European Network of Research Ethics Committees. (2013). National information: Sweden. Retrieved from http://www.eurecnet.org/information/sweden.html
  • Fisher, C. B. (2006). Paper three: Relational ethics and research with vulnerable populations. Retrieved from http://onlineethics.org/CMS/2963/resref/nbacindex/mindex/mpaper3.aspx
  • Flicker, S., Haans, D., & Skinner, H. (2004). Ethical dilemmas in research on internet communities. Qualitative Health Research, 14, 124–134. doi:10.1177/1049732303259842
  • Freedman, B. (1987). Equipoise and the ethics of clinical research. The New England Journal of Medicine, 317, 141–145. doi:10.1056/NEJM198707163170304
  • Freed-Taylor, M. (1994). Ethical considerations in European cross-national research. International Social Science Journal, 142, 523–532.
  • Garrafa, V., Solbakk, J. H., Vidal, S., & Lorenzo, C. (2010). Between the needy and the greedy: The quest for a just and fair ethics of clinical research. Journal of Medical Ethics, 36, 500–504. doi:10.1136/jme.2009.032656
  • Giacobbe, R. W., & Segal, M. N. (2000). A comparative analysis of ethical perceptions in marketing research: USA vs. Canada. Journal of Business Ethics, 27, 229–245. doi:10.1023/A:1006121122073
  • Glickman, S. W., McHutchison, J. G., Peterson, E. D., Cairns, C. B., Harrington, R. A., Califf, R. M., & Schulman, K. A. (2009). . Ethical and scientific implications of the globalization of clinical research. New England Journal of Medicine, 360, 816–823. doi:10.1056/NEJMsb0803929
  • Gostin, L. (1991). Ethical principles for the conduct of human subject research: Population-based research and ethics. The Journal of Law, Medicine & Ethics, 19, 191–201. doi:10.1111/jlme.1991.19.issue-3-4
  • Graffigna, G., Bosio, A. C., & Olson, K. (2010). How do ethics assessments frame results of comparative qualitative research? A theory of technique approach. International Journal of Social Research Methodology, 13, 341–355. doi:10.1080/13645570903209076
  • Grodin, M. (1992). Historical origins of the Nuremberg Code. In G. J. Annas & M. A. Grodin (Eds.), The Nazi doctors and the Nuremberg Code: Human rights in human experimentation (pp. 121–144). New York, NY: Oxford University Press.
  • Haggerty, K. D. (2004). Ethics creep: Governing social science research in the name of ethics. Qualitative Sociology, 27, 391–414. doi:10.1023/B:QUAS.0000049239.15922.a3
  • Health Research Authority. (2013). Ethical review requirements. Retieved from http://www.nres.nhs.uk/applications/approval-requirements/ethical-review-requirements/
  • Hearnshaw, H. (2004). Comparison of requirements of research ethics committees in 11 European countries for a non-invasive interventional study. British Medical Journal, 328, 140–141.
  • Heath, S., Charles, V., Crow, G., & Wiles, R. (2007). Informed consent, gatekeepers and go-betweens: Negotiating consent in child- and youth-orientated institutions. British Educational Research Journal, 33, 403–417.
  • Hedgecoe, A. (2008). Research ethics review and the sociological research relationship. Sociology, 42, 873–886.
  • Hedgecoe, A., Carvalho, F., Lobmayer, P., & Raka, F. (2006). Research ethics committees in Europe: Implementing the directive, respecting diversity. Journal of Medical Ethics, 32, 483–486.
  • Helweg-Larsen, K., & Bøving-Larsen, H. (2003). Ethical issues in youth surveys: Potentials for conducting a national questionnaire study on adolescent schoolchildren’s sexual experiences with adults. American Journal of Public Health, 93, 1878–1882.
  • Hens, K., Nys, H., Cassiman, J. J., & Dierickx, K. (2009). Biological sample collections from minors for genetic research: A systematic review of guidelines and position papers. European Journal of Human Genetics, 17, 979–990.
  • Hirtle, M., Lemmens, T., & Sprumont, D. (2000). A comparative analysis of research ethics review mechanisms and the ICH good clinical practice guideline. European Journal of Health Law, 7, 265–292.
  • Hyder, A. A., Wali, S. A., Khan, A. N., Teoh, N. B., Kass, N. E., & Dawson, L. (2004). Ethical review of health research: A perspective from developing country researchers. Journal of Medical Ethics, 30, 68–72.
  • Inglehart, R. (1997). Modernization and postmodernization: Cultural, economic, and political change in 43 societies (Vol. 19). Princeton, NJ: Princeton University Press.
  • International Centre for Prison Studies. (2013). Europe—Prison population rates per 100,000 of the national population. Retrieved from http://www.prisonstudies.org/info/worldbrief/wpb_stats.php?area=europe&category=wb_poprate
  • International Monetary Fund. (2013). World economic and financial survey. World economic outlook database. Retrieved from http://www.imf.org/external/pubs/ft/weo/2012/01/weodata/index.aspx
  • Jacobs, J., & Blitsa, D. (2012). . US, EU & UK employment vetting as strategy for preventing convicted sex offenders from gaining access to children. European Journal on Crime, Criminal Law & Criminal Justice, 20, 265–296.
  • Jewkes, R., Watts, C., Abrahams, N., Penn-Kekana, L., & García-Moreno, C. (2000). Ethical and methodological issues in conducting research on gender-based violence in Southern Africa. Reproductive Health Matters, 8(15), 93–103.
  • Johnson, E. I., & Easterling, B. (2012). Understanding unique effects of parental incarceration on children: Challenges, progress, and recommendations. Journal of Marriage and Family, 74, 342–356.
  • Jones, A., Gallagher, B., Manby, M., Robertson, O., Schützwohl, M., Berman, A. H., … Sharratt, K. (2013). Children of prisoners: Interventions and mitigations to strengthen mental health. Huddersfield, UK: University of Huddersfield.
  • Kamalski, J., & Plume, A. (2013). Comparative benchmarking of European and US research collaboration and researcher mobility. A report prepared in collaboration between Science Europe and Elsevier’s SciVal Analytics. Amsterdam, the Netherlands: Elsevier.
  • Karamessini, M. (2007). The Southern European social model: Changes and continuities in recent decades. Geneva, Switzerland: International Labour Organization.
  • Klitzman, R. (2008). Views of the process and content of ethical reviews of HIV vaccine trials among members of US Institutional Review Boards and South African research ethics committees. Developing World Bioethics, 8, 207–218.
  • Lavery, J. V. (2004). Putting international research ethics guidelines to work for the benefit of developing countries. Yale Journal of Health Policy, Law, & Ethics, 4, 319–336.
  • Leach, M. M., & Harbin, J. J. (1997). Psychological ethics codes: A comparison of 24 countries. International Journal of Psychology, 32, 181–192.
  • Lees, D., Procter, N., & Fassett, D. (2014). Therapeutic engagement between consumers in suicidal crisis and mental health nurses. International Journal of Mental Health Nursing, 23, 306–315.
  • London, A. J. (2007). Two dogmas of research ethics and the integrative approach to human-subjects research. Journal of Medicine and Philosophy, 32, 99–116.
  • London, L. (2002). Ethical oversight of public health research: Can rules and IRBs make a difference in developing countries? American Journal of Public Health, 92, 1079–1084.
  • Lounsbury, D. W., Reynolds, T. C., Rapkin, B. D., Robson, M. E., & Ostroff, J. (2007). Protecting the privacy of third-party information: Recommendations for social and behavioral health researchers. Social Science & Medicine, 64, 213–222.
  • Louw, B., & Delport, R. (2006). Contextual challenges in South Africa: The role of a research ethics committee. Journal of Academic Ethics, 4(1–4), 39–60.
  • Lurie, P., & Wolfe, S. M. (1997). Unethical trials of interventions to reduce perinatal transmission of the human immunodeficiency virus in developing countries. The New England Journal of Medicine, 337, 853–856.
  • Manihera, Te U. (1992). Foreword. In M. King (Ed.), Te Ao Hurihuri: Aspects of Māoritanga (p. 9). Auckland: Reed Publishing.
  • McGuire, A. L., Colgrove, J., Whitney, S. N., Diaz, C. M., Bustillos, D., & Versalovic, J. (2008). Ethical, legal, and social considerations in conducting the human microbiome project. Genome Research, 18, 1861–1864.
  • Mishna, F., Antle, B. J., & Regehr, C. (2004). Tapping the perspectives of children: Emerging ethical issues in qualitative research. Qualitative Social Work, 3, 449–468.
  • Moodley, K. (2007). Microbicide research in developing countries: Have we given the ethical concerns due consideration? BMC Medical Ethics, 8, 10.
  • Murray, J., Farrington, D. P., Sekol, I., & Olsen, R. F. (2009). Effects of parental imprisonment on child antisocial behaviour and mental health: A systematic review. Campbell Systematic Reviews, 4. doi:10.4073/csr.2009.4
  • Mzayek, F., & Resnik, D. (2010). International biomedical research and research ethics training in developing countries. Journal of Clinical Research & Bioethics, 1, 103. doi:10.4172/2155-9627.1000103
  • Nyika, A., Kilama, W., Chilengi, R., Tangwa, G., Tindana, P., Ndebele, P., & Ikingura, J. (2009). Composition, training needs and independence of ethics review committees across Africa: Are the gate-keepers rising to the emerging challenges? Journal of Medical Ethics, 35, 189–193.
  • Oduro, A. R., Aborigo, R. A., Dickson Amugsi, F. A., Anyorigiya, T., Atuguba, F., Hodgson, A., & Koram, K. A. (2008). Understanding and retention of the informed consent process among parents in rural northern Ghana. BMC Medical Ethics, 9, 12.
  • Pipi, K., Cram, F., Hawke, R., Hawke, S., Huriwai, T., Mataki, T., … Tuuta, C. (2004). A research ethic for studying Maori and Iwi provider success. Social Policy Journal of New Zealand, 23, 141–154.
  • Pont, J. (2008). Ethics in research involving prisoners. International Journal of Prisoner Health, 4, 4.
  • Powell, M. A., & Smith, A. B. (2006). Ethical guidelines for research with children: A review of current research ethics documentation in New Zealand. Kōtuitui: New Zealand Journal of Social Sciences Online, 1, 125–138.
  • Powell, M. A., & Smith, A. B. (2009). Children’s participation rights in research. Childhood, 16, 124–142.
  • Ries, N., LeGrandeur, J., & Caulfield, T. (2010). Handling ethical, legal and social issues in birth cohort studies involving genetic research: Responses from studies in six countries. BMC Medical Ethics, 11, 4.
  • Robertson, O. (2007). The impact of parental imprisonment on children. Geneva, Switzerland: Quaker United Nations Office.
  • Rosenberg, M. (2014). The number of countries in the world. Retrieved from http://geography.about.com/cs/countries/a/numbercountries.htm
  • Salway, S. M., Higginbottom, G., Reime, B., Bharj, K. K., Chowbey, P., Foster, C., & O’Brien, B. (2011). Contributions and challenges of cross-national comparative research in migration, ethnicity and health: Insights from a preliminary study of maternal health in Germany, Canada and the UK. BMC Public Health, 11, 514.
  • Sampson, D. A., Caldwell, D., Taylor, A. D., & Taylor, J. Y. (2013). Blending genetics and sociocultural historical inquiry: Ethics, culture, and human subjects protection in international cross cultural research. The Yale Journal of Biology and Medicine, 86, 89.
  • Savage, E., & McCarron, S. (2009). Research access to adolescents and young adults. Applied Nursing Research, 22, 63–67.
  • Scheyvens, R., Scheyvens, H., & Murray, W. E. (2003). Working with marginalised, vulnerable or privileged groups. In R. Scheyvens & D. Storey (Eds.), Development fieldwork: A practical guide (pp. 167–193). London, UK: Sage.
  • Sheahan, L., Da Silva, M., Czoli, C., & Shaul, R. Z. (2012). A Canadian perspective on a child’s consent to research within a context of family-centered care: From incompatibility to synergy. Journal of Clinical Research & Bioethics, 3, 132.
  • Singer, E., & Bossarte, R. M. (2006). Incentives for survey participation: When are they “coercive”? American Journal of Preventive Medicine, 31, 411–418.
  • Suhonen, R., Saarikoski, M., & Leino-Kilpi, H. (2009). Cross-cultural nursing research. International Journal of Nursing Studies, 46, 593–602.
  • Swain, J., Heyman, B., & Gillman, M. (1998). Public research, private concerns: Ethical issues in the use of open-ended interviews with people who have learning difficulties. Disability & Society, 13, 21–36.
  • Taylor, C. G. (2008). Counterproductive effects of parental consent in research involving LGBTTIQ youth: International research ethics and a study of a Transgender and Two-Spirit community in Canada. Journal of LGBT Youth, 5(3), 34–56.
  • Thomas, F. (2007). Eliciting emotions in HIV/AIDS research: A diary-based approach. Area, 39, 74–82.
  • Uys, L. R. (2006). Are ethics committees always ethical? International Journal of Nursing Practice, 12, 1–2.
  • Valdez-Martinez, E., Garduño-Espinosa, J., Martinez-Salgado, H., & Porter, J. D. H. (2004). Local research ethics committees of the Mexican institute of social security: Results of a national survey. Public Health, 118, 329–336.
  • Verkuyten, M. (2009). Self-esteem and multiculturalism: An examination among ethnic minority and majority groups in the Netherlands. Journal of Research in Personality, 43, 419–427.
  • Vitiello, B. (2003). Ethical considerations in psychopharmacological research involving children and adolescents. Psychopharmacology, 171, 86–91.
  • Walmsley, R. (2008). World prison population list. London, UK: Kings College London.
  • Zachariah, R., Ford, N., Maher, D., Bissell, K., Van Den Bergh, R., Van Den Boogaard, W., … Harries, A. D. (2012). Is operational research delivering the goods? The journey to success in low-income countries. The Lancet Infectious Diseases, 12, 415–421.