Multi-region Ethics Committee Annual Report 2008 Published in September 2009 by the Ministry of Health PO Box 5013, Wellington, New Zealand ISBN 978-0-478-31987-3 (print) ISBN 978-0-478-31988-0 (online) HP 4941 This document is available on the New Zealand Health and Disability Ethics Committee’s website: http://www.ethicscommittees.health.govt.nz Contents Chairperson’s Report 1 Committee Membership 3 Response to Cultural Issues 11 Applications 12 Issues 14 Guidelines for Chairperson’s Delegation 15 Appendix 1: Multi-region Ethics Committee Terms of Reference 16 Appendix 2: Applications Received in 2008 26 Multi-region Ethics Committee Annual Report 2008 iii Chairperson’s Report This report summarises the activities of the Multi-region Ethics Committee from 1 January to 31 December 2008. The report was presented to the committee at its meeting on 21 July 2009. The report gives details of the applications considered for ethical evaluation during the 2008 calendar year. In 2008, 237 applications were received, of which 164 applications were considered by the full committee, and 72 expedited review applications were reviewed by a deputy chairperson or subcommittee under delegated authority. One application was withdrawn before review. On average, each full meeting reviewed 13 applications. In circumstances similar to those mentioned in the 2006 and 2007 annual reports, an extra meeting was needed in October. Thus, monthly meetings always contained a full agenda that required considerable organisation on the part the committee’s two administrators. For this input, the administrators have the committee members’ commendation and appreciation. Two new members, Dr John Baker and Dr Paul Copland, joined the committee in August, replacing Dr Simon Jones whose term expired in June 2008 and Dr Martin Tolich who resigned in November 2007. The committee thanks them for their contribution to the committee. A requisite quorum of at least seven members, made up from a mix of lay and non-lay members, was achieved for all meetings except one where adverse weather interfered with previously booked travel arrangements. The work on this agenda was re-scheduled to a later date. Notwithstanding the recruitment activity noted above, delays in the appointment of new members to health and disability ethics committees remain a problem. The appointment of chairpersons is a particularly troublesome matter where the absence of appropriate succession planning, together with the very limited opportunities to mentor such individuals, has the potential to threaten both the continuity and effective functioning of these committees. It may be that the length of term of appointment for chairpersons needs to be considered separately, so the experience of longer-serving members can be more flexibly utilised. The persistence of concern around this area can be illustrated by reference to last year’s annual report of the Multi-region Ethics Committee where it was noted by the then chairperson, Dr Martin Tolich, that: The chair’s request for an efficient reappointment process was not fulfilled. In 2007, rather than the appointment transition occurring in December, these appointments did not occur until March 2008. This process was unsatisfactory in 2006, and continues to be unsatisfactory in 2007. Multi-region Ethics Committee Annual Report 2008 1 The matter of the inflexibility around appointing chairpersons was brought to a head after Dr Tolich resigned as inaugural chairperson in November with his last meeting in January 2008. For the period up to and including the May meeting, meetings were chaired by deputy chairperson Associate Professor Cynthia Darlington after which the role fell to Dr Barry Smith (the second deputy chairperson) for the remainder of the year. This does not seem to be a satisfactory situation in terms of the appointment process. Another issue of continuing concern for committee members lies with the inadequacies seen in the way applicants engage with Māori. In a noticeable proportion of applications, the quality of Māori consultation is either absent or at best perfunctory. This aspect of health research in New Zealand requires improvement given the degree of disparity in health status between Māori and other segments of New Zealand’s population. It is hoped that action around the development of a Māori ethics framework being consistently requested by Māori members of the health and disability ethics committees will lead to a greater understanding of the issues involved. Changes in the organisation of health research along with developments in medical technology continue to raise challenges for those involved in ethical evaluation. However, the broad range of backgrounds and the combined expertise of members of the Multi-region Ethics Committee and its administrative support have enabled it to deal effectively with a wide range of ethical matters. As the acting chairperson, I express my warm appreciation for the unswerving level of commitment and care all members display to this important task. Barry Smith Acting Chairperson 2 Multi-region Ethics Committee Annual Report 2008 Committee Membership Appointments The Minister of Health appointed the following committee members under section 11 of the New Zealand Public Health and Disability Act 2000. Chairperson (January) Martin Tolich BA (Auck), MA (Auck), PhD (California, Davis) Representation Lay member Member category Ethicist Gender Male Date of appointment November 2004 Term of appointment 3 years Six-year maximum term November 2008 Professional affiliations Programme co-ordinator, sociology, Anthropology Department, University of Otago Iwi affiliations None Deputy chairperson Cynthia Darlington BA (Class I), PhD (Sydney) Representation Non-lay member Member category Pharmacist/pharmacologist Gender Female Date of appointment November 2004 Term of appointment 3 years Six-year maximum term November 2010 Professional affiliations Department of Pharmacology and Toxicology, University of Otago; Editorial Board, CNS Editor, current opinion in investigational drugs Iwi affiliations None Deputy chairperson (elected July 2008) Barry Smith QSM, BSc, MPhil (Auck), PhD (Essex), GradDipArts (Music) (Waik) Representation Lay member Member category Community representative, Māori Gender Male Date of appointment November 2004 Term of appointment 3 years Six-year maximum term November 2007 Expertise Research methods, research ethics, Māori research Multi-region Ethics Committee Annual Report 2008 3 Professional affiliations National School of Performing Arts; Te Wānanga o Aotearoa ki Rotorua; chairperson, Lakes District Health Board Research and Ethics Committee; social research consultant Iwi affiliations Te Rarawa, Ngāti Kahu Members Maliaga Erick Degree in social work, Graduate Certificate in Dual Diagnosis Representation Lay member Member category Consumer representative Gender Female Date of appointment November 2004 Term of appointment 3 years Six-year maximum term November 2010 Professional affiliations Auckland District Health Board Iwi affiliations Niuean Graham Mellsop MBChB (Otago), DPM, MD (Melb), FRANZCP Representation Non-lay member Member category Health practitioner Gender Male Date of appointment November 2004 Term of appointment 2 years Six-year maximum term November 2009 Professional affiliations Royal College of Psychiatrists; professor of psychiatry, Waikato Clinical School, Faculty of Medical and Health Services, University of Auckland Iwi affiliations None Sheila Williams BSc (Hons) (Hull), PGDipSc (Otago), DSc (Otago) Representation Non-lay member Member category Biostatistician Gender Female Date of appointment November 2004 Term of appointment 3 years Six-year maximum term November 2010 Professional affiliations Department of Preventative and Social Medicine, University of Otago Medical School Iwi affiliations None Christopher Wynne MBChB (Otago), FRANZCR, FAChPM Representation Non-lay member Member category Health practitioner Gender Male Date of appointment November 2004 Term of appointment 3 years Retirement date July 2010 4 Multi-region Ethics Committee Annual Report 2008 Professional affiliations Clinical director, consultant radiation oncologist, Oncology Service, Christchurch Hospital; oncologist, Canterbury Breastcare; clinical investigator, Christchurch Clinical Studies Trust Iwi affiliations None Carolyn Weston QSM Representation Lay member Member category Consumer representative Gender Female Date of appointment November 2004 Term of appointment 2 years Six-year maximum term November 2009 Expertise Disabilities, advocacy Iwi affiliations None Georgina Johnson GDipNFP (Unitec) Representation Lay member Member category Community representative, Māori Gender Female Date of appointment July 2005 Term of appointment 3 years Six-year maximum term July 2011 Professional affiliations Executive member, National Association of Out of School Care and Recreation; executive member, Tairawhiti Youth Workers Collective; Māori Women’s Welfare League Iwi affiliations Ngāti Porou, Ngāti Raukawa Margaret Horsburgh RN, BA, Dip Education, MA (Auck), EdD (Charles Stuart), ANZAME Representation Non-lay member Member category Health practitioner Gender Female Date of appointment December 2006 Term of appointment 3 years Six-year maximum term December 2012 Professional affiliations Associate professor of nursing, University of Auckland; College of Nurses Aotearoa; Institute of Directors; Spectrum Care Trust; Expert Advisory Group on Primary Health Care Nursing; Performance-Based Research Fund