Home / National Ethical Standards / Part three / 20. Bibliography

20. Bibliography

ACART. 2005. Guidelines for Research on Gametes and Non-viable Embryos. Wellington: Advisory Committee on Assisted Reproductive Technology (accessed 18 June 2019).

Anae M, Coxon E, Mara D, et al. 2001. Pasifika Education Research Guidelines. Wellington: Ministry of Education (accessed 18 June 2019).

Beaton A, Smith B, Toki K, et al. 2015. Engaging Māori in biobanking and genetic research: Legal, ethical, and policy challenges. The International Indigenous Policy Journal 6(3).

Berg RM, Møller K, Rossel PJ. 2013. An ethical analysis of proxy and waiver of consent in critical care research. Acta Anaesthesiologica Scandinavica 57(4): 408–16 (accessed 18 June 2019).

Berger JT. 2011. Is best interests a relevant decision making standard for enrolling non-capacitated subjects into clinical research? Journal of Medical Ethics 37(1): 45–9 (accessed 18 June 2019).

Brack M, Castillo T. 2015. Data Sharing for Public Health: Key lessons from other sectors. London: Chatham House (accessed 18 June 2019).

Calveley J. 2012. Including adults with intellectual disabilities who lack capacity to consent in research. Nursing Ethics 19(4): 558–67 (accessed 18 June 2019).

Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada. 2014. TCPS2: Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Ottawa: Government of Canada (accessed 18 June 2019).

Careerforce. 2015. Pacific Values and Principles [PDF, 873 KB]. Christchurch: Careerforce (accessed 18 June 2019).

Cassell J, Young A, 2002. Why we should not seek individual informed consent for participation in health services research. Journal of Medical Ethics 28: 313-317.

CEBM. 2019. Levels of Evidence (accessed 13 June 2019).

CIOMS, WHO. 2016. International Ethical Guidelines for Health-related Research involving Humans. Geneva: Council for International Organizations of Medical Sciences (accessed 18 June 2019).

Clinical Audit and Effectiveness Department. 2007. The Difference between Audit & Research. London: NHS Blood and Transplant.

COPE. 2017. Ethical Guidelines for Peer Reviewers. Committee on Publication Ethics (accessed 18 June 2019).

Committee on Quality of Health Care in America. 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press.

Counties Manukau District Health Board. 2016. Guideline: Ethical Guideline for Quality Improvement. Auckland: Counties Manukau District Health Board (accessed 18 June 2019).

Cunningham C. 2000. A framework for addressing Māori knowledge in research, science and technology. Pacific Health Dialog 7: 62–9.

Dal-Re R, Solá CA, Gil-Aguado A, et al. 2008. When should re-consent of subjects participating in a clinical trial be requested? A case-oriented algorithm to assist in the decision-making process. Clinical Pharmacology & Therapeutics 83(5): 788–93.

Data Governance Institute. 2017. The basic information (accessed 17 June 2019).

Data Linkage Western Australia. 2019. What is data linkage? (accessed 14 June 2019).

Dickert NW, Brown J, Cairns CB, et al. 2016. Confronting ethical and regulatory challenges of emergency care research with conscious patients. Annals of Emergency Medicine 67(4): 538–45 (accessed 18 June 2019).

Douglass A. 2016. Mental Capacity: Updating New Zealand’s law and practice. Dunedin: New Zealand Law Foundation.

Fenech M, Strukelj N, Buston O. 2018. Ethical, Social, and Political Challenges of Artificial Intelligence in Health. London: Wellcome Trust (accessed 17 June 2019).

Gilbert T, Bosquet A, Thomas-Antérion C, et al. 2017. Assessing capacity to consent for research in cognitively impaired older patients. Clinical Interventions in Aging 12: 1553–63.

Gillett G. 2014. Bioethical issues. Journal of Law and Medicine 21: 780–8.

Gopichandran V, Luyckx VA, et al. 2016. Developing the ethics of implementation research in health. Implementation Science (accessed 07 November 2019).

Health and Disability Ethics Committees. 2018. HDEC review and approvals (accessed 5 June 2019).

Hirschhorn LR, Ramaswamy R, Devnani M, et al. 2018. Research versus practice in quality improvement? Understanding how we can bridge the gap. International Journal for Quality in Health Care 30: 24–8 (accessed 5 June 2019).

HRC. 2007. Guidelines for Health Research with Children. Wellington: Health Research Council of New Zealand. URL: http://www.hrc.govt.nz/sites/default/files/HRC%20Guidelines%20for%20Heal... (accessed 18 June 2019).

HRC. 2010. Guidelines for Researchers on Health Research Involving Māori. Wellington: Health Research Council of New Zealand (accessed 18 June 2019).

HRC. 2014a. Guidance Notes on Research Ethics. Wellington: Health Research Council of New Zealand. URL: http://www.hrc.govt.nz/sites/default/files/HRC%20Guidance%20Notes%20on%2... (accessed 18 June 2019).

HRC. 2014b. Pacific Health Research Guidelines. Wellington: Health Research Council of New Zealand (accessed 6 June 2019).

HRC. (nd). Seeking Ethical Review (accessed 5 June 2019).

Hudson M, Anderson T, Dewes TK, et al. 2017. ‘He Matapihi ki te Mana Raraunga’: conceptualising big data through a Māori lens. In: H Whaanga, TK Keegan, M Apperley (eds), He Whare Hangarau Māori: Language, culture and technology. Hamilton: Te Pua Wānanga ki te Ao/Faculty of Māori and Indigenous Studies, Te Whare Wānanga o Waikato/University of Waikato.

International Committee of Medical Journal Editors. 2004. Uniform Requirements for Manuscripts Submitted to Biomedical Journals: Writing and editing for biomedical publication. International Committee of Medical Journal Editors.

Iphofen R. 2009. Ethical Decision Making in Social Research: a practical guide. New York: Palgrave Macmillan.

Hudson M, Beaton A, Milne M, et al. 2016a. He Tangata Kei Tua: Guidelines for Biobanking with Māori. Hamilton: Te Mata Hautū Taketake – Māori & Indigenous Governance Centre, University of Waikato (accessed 18 June 2019).

Hudson M, Beaton A, Milne M, et al. 2016b. Te Mata Ira: Guidelines for Genomic Research with Māori [PDF, 668 KB]. Hamilton: Te Mata Hautū Taketake – Māori & Indigenous Governance Centre, University of Waikato (accessed 18 June 2019).

Hudson M, Milne M, Reynolds P, et al. 2010. Te Ara Tika: Guidelines for Māori research ethics. Wellington: Health Research Council of New Zealand.

Ingram C. 2016. How and why you should manage your research data: a guide for researchers (accessed 18 June 2019).

ISSCR. 2016. Guidelines for Stem Cell Research and Clinical Translation. Skokie, IL: International Society for Stem Cell Research (accessed 18 June 2019).

Jiang F, Jiang Y, Zhi H, et al. 2017. Artificial intelligence in healthcare: past, present and future. Stroke and Vascular Neurology 2(4): 230–43.

Jones B, Vaux E, Olsson-Brown A. 2019. How to get started in quality improvement. BMJ 364: k5408 (accessed 5 June 2019).

Jones RW. 2017. Doctors in Denial: The forgotten women in the ‘Unfortunate Experiment’. Dunedin: Otago University Press.

Kim SY. 2016. Clinical trials without consent? Perspectives in Biology and Medicine 59(1): 132–46 (accessed 18 June 2019).

Lange MM, Rogers W, Dodds S. 2013. Vulnerability in research ethics: a way forward. Bioethics 27(6): 333–40.

Largent EA, Wendler D, Emanuel E, et al. 2010. Is emergency research without initial consent justified? The consent substitute model. Archives of Internal Medicine 170(8): 668–74 (accessed 18 June 2019).

Lynn J, Baily MA, Bottrell M, et al. 2007. The ethics of using quality improvement methods in health care. Annals of Internal Medicine 146(9): 666–73.

Manning J. 2009. The Cartwright Papers: Essays on the cervical cancer inquiry 1987–88. Wellington: Bridget Williams Books.

Manning J. 2016a. Non-consensual clinical research in New Zealand: law reform urgently needed. Journal of Law and Medicine 23(3): 516–30 (accessed 18 June 2019).

Manning J. 2016b. ‘Without legal commitment’: Compensation for research-related injury in commercially-sponsored clinical trials in New Zealand. In: M Henaghan, J Wall (eds), Law, Ethics, and Medicine: Essays in honour of Peter Skegg. Wellington: Thomson Reuters.

Medical Council of New Zealand. (nd). Current standards (accessed 18 June 2019).

Memorial Health. (nd). Determining the difference between clinical research and quality/performance improvement at Memorial University Medical Center. Savannah: Memorial Health.

Miller FG, Emanuel EJ. 2008. Quality-improvement research and informed consent. New England Journal of Medicine 358(8): 765–7 (accessed 18 June 2019).

Millum J, Grady C. 2013. The ethics of placebo-controlled trials: methodological justifications. Contemporary Clinical Trials 36(2).

Ministry for Pacific Peoples. 2017. Kapasa: The Pacific Policy Analysis Tool. Wellington: Ministry for Pacific Peoples (accessed 18 June 2019).

Ministry of Business, Innovation and Employment and Ministry of Health. 2017. New Zealand Health Research Strategy 2017–2027. Wellington: Ministry of Business, Innovation and Employment and Ministry of Health.

Ministry of Health. 1998. Consent in Child and Youth Health: Information for Practitioners. Wellington: Ministry of Health.

Ministry of Health. 2002. Operational Standard for Ethics Committees. Wellington: Ministry of Health (accessed 18 June 2019).

Ministry of Health. 2006. Guidelines for Using Cells from Established Human Embryonic Stem Cell Lines for Research. Wellington: Ministry of Health (accessed 18 June 2019).

Ministry of Health. 2007. Guidelines for the Use of Human Tissue for Future Unspecified Research Purposes. Wellington: Ministry of Health (accessed 18 June 2019).

Ministry of Health. 2008. Standard Operating Procedures for Health and Disability Ethics Committees. Wellington: Ministry of Health (accessed 18 June 2019).

Ministry of Health. 2014a. ’Ala Mo’ui: Pathways to Pacific Health and Wellbeing 2014–2018. Wellington: Ministry of Health (accessed 5 June 2019).

Ministry of Health. 2014b. He Korowai Oranga (accessed 5 June 2019).

Ministry of Health. 2016. New Zealand Health Strategy: Future direction. Wellington: Ministry of Health (accessed 18 June 2019).

Ministry of Health. 2017a. HISO 10001:2017 Ethnicity Data Protocols. Wellington: Ministry of Health (accessed 19 June 2019).

Ministry of Health. 2017b. Therapeutic products regulatory regime (accessed 19 June 2019).

Ministry of Pacific Island Affairs. 1998. Pacific Analysis Framework with Pacific consultation guidelines. Wellington: Ministry of Pacific Island Affairs (accessed 19 June 2019).

Ministry of Social Development. 2001. New Zealand Disability Strategy. Wellington: Ministry of Social Development.

Ministry of Social Development. 2016. New Zealand Disability Strategy 2016–2026. Wellington: Ministry of Social Development.

National Disability Authority. 2009. Ethical Guidance for Research with People with Disabilities. Dublin: National Disability Authority.

National Ethics Advisory Committee. 2003. Ethical Review of Observational Research, Audit and Related Activities: Discussion document. Wellington: National Health and Medical Research Council (accessed 19 June 2019).

National Ethics Advisory Committee. 2012. Ethical Guidelines for Observational Studies: Observational research, audits and related activities. Revised edition. Wellington: Ministry of Health (accessed 19 June 2019).

National Ethics Advisory Committee – Kāhui Matatika o te Motu. 2012. Āhuatanga ū ki te Tika me te Pono mō te Rangahau Māori: Māori research ethics: An overview. Wellington: Ministry of Health (accessed 19 June 2019).

NHMRC. 2018. National Statement on Ethical Conduct in Human Research 2007 (updated 2018). Canberra: National Health and Medical Research Council.

NIMH. (nd). NIMH Guidance on Risk-Based Monitoring (accessed 12 June 2019).

Nuffield Council on Bioethics. 2015. The Collection, Linking and Use of Data in Biomedical Research and Health Care: Ethical issues. London: Nuffield Council on Bioethics (accessed 19 June 2019).

Nuffield Council on Bioethics. 2018. Artificial intelligence (AI) in healthcare and research. Briefing note. London: Nuffield Council on Bioethics (accessed 17 June 2019).

Pacific Research & Policy Centre. (nd). Pacific Research Guidelines and Protocols. Hamilton: Massey University (accessed 19 June 2019).

Pratt B, Paul A, et al. 2017. Ethics of health policy and systems research: a scoping review of the literature. Health Policy and Planning 32(6): 890-910 (accessed 15 November 2019).

Provost L, Murray S. 2011. The Health Care Data Guide: Learning from Data for Improvement. San Francisco: Jossey-Bass.

Pulotu-Endemann FE. 2001. Fonofale Model of Health. Auckland: Hauora (accessed 1 February 2018).

Rid A, Wendler D. 2010. Risk–benefit assessment in medical research – critical review and open questions. Law, Probability & Risk 9(3–4): 151–77 (accessed 19 June 2019).

Rogers W, Lange MM. 2013. Rethinking the vulnerability of minority populations in research. American Journal of Public Health 103(12): 2141–6.

Sahan KM, Channon KM, Choudhury RP, et al. 2016. Refining the enrolment process in emergency medicine research. European Journal of Cardiovascular Medicine 4(1): 506–10 (accessed 19 June 2019).

Scottish Government. 2012. Joined-up Data for Better Decisions: Guiding principles for data linkage. Edinburgh: Scottish Government (accessed 19 June 2019).

Smith B, Tolich M. 2014. A cultural turn: The trivialisation of indigenous research ethics in New Zealand post-2012 health and disability ethics committees. MAI Journal 3(2): 255–67.

Stats NZ, Privacy Commissioner. 2018. Principles for safe and effective use of data and analytics (accessed 17 June 2019).

Sullivan MJ. 2009. Philosophy, Ethics, and the Disability Community. In: DM Mertens, PE Ginsberg (eds), The Handbook of Social Research Ethics. Thousand Oaks: Sage Publications.

Tobias M, Yeh L. 2009. How much does health care contribute to health gain and to health inequality? Trends in amenable mortality in New Zealand 1981–2004. Australian and New Zealand Journal of Public Health 33: 70–8 (accessed 19 June 2019).

United Nations Framework Convention on Climate Change Secretariat. 2018. 2018 Talanoa Dialogue Platform (accessed 6 June 2019).

University of Otago. 2011. Pacific Research Protocols. Dunedin: University of Otago (accessed 19 June 2019).

US Department of Health and Human Services Health Resources and Service Administration. 2011. Quality Improvement [PDF, 250 KB]. Rockville, MD: US Department of Health and Human Services Health Resources and Service Administration (accessed 19 June 2019).

Wendler D, Dickert NW, Silbergleit R, et al. 2017. Targeted consent for research on standard of care interventions in the emergency setting. Critical Care Medicine 45(1): e105-e10 (accessed 19 June 2019).

Whaanga H, Keegan Te T, Apperley M (eds). 2017. He Whare Hangarau Māori: Language, culture & technology. Hamilton: Te Pua Wānanga ki te Ao/Faculty of Māori and Indigenous Studies, Te Whare Wānanga o Waikato/University of Waikato.

WHO. 2014. Mental health: a state of well-being (accessed 5 June 2019).

WHO. 2019a. Health equity (accessed 5 June 2019).

WHO. 2019b. Health Impact Assessment (accessed 5 June 2019).

Williamson B. 2015. Access. In Adams R, Reiss B, Serlin D (eds). 2015. Keywords for Disability Studies. New York: New York University Press.

WMA. 2006. Declaration of Taipei on Ethical Considerations Regarding Health Databases and Biobanks. Washington: World Medical Association (accessed 19 June 2019).

WMA. 2017. Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects (accessed 19 June 2019).

Workman TA. 2013. Engaging patients in information sharing and data collection: the role of patient-powered registries and research networks. Community Forum White Papers. Rockville, MD: Agency for Healthcare Research and Quality.

Zwitter A. 2014. Big data ethics. Big Data & Society 1(2) (accessed 18 June 2019).