Asia-Pacific Regional Meeting for National Ethics/Bioethics Committees 222-23 October 2019

Reducing Inequities through Solutions-Oriented Bioethics

INFORMATION BULLETIN

BACKGROUND

Asia-Pacific Regional Meeting for National Bioethics/Ethics Committees (AP-NEC2) will be hosted by the National Ethics Advisory Committee (NEAC) in Wellington, New Zealand, on 22-23 October 2019. AP-NEC2 will provide a platform for participants to exchange ideas, build support, strengthen capacities, and foster collaboration in driving sustainable action on regional priority issues in Bioethics. The Ministry of Health will provide Secretariat support to the APNEC-2 Steering Committee, including facilitating the organisation of the meetings, preparation of documents, communication among members, and technical, managerial, and administrative matters.

The World Health Organization, led by the WHO Regional Office for the Western Pacific (WHO WPRO), will work collaboratively with the Ministry of Health Secretariat to provide technical advice and support to APNEC-2. Guidance in developing the programme will be provided by the AP-NEC2 Steering Committee, chaired by NEAC and consisting of members from New Zealand, Fiji, the Republic of Korea, Bangladesh, Viet Nam, Nepal, WPRO, WHO Regional Office for South East Asia (SEARO), and UNESCO. A member from India will provide advisory support.

PARTICIPANTS

Countries in the WHO Western Pacific and South East Asia Regions with active national ethics/bioethics committees and/or other on-going initiatives will be invited. Each country will be asked to nominate the chair of the country’s national ethics/bioethics committee (NEC) or other advisory group, if any, that provides guidance to the government on Bioethics issues, and a senior officer in the Ministry of Health or other government agency who is responsible for the development, implementation, and/or evaluation of Bioethics policies and programmes, if any. NEAC will consult and coordinate with WHO, as well as UNESCO, to identify potential candidates and facilitate their participation.

CONCEPTUAL FRAMEWORK

Bioethics promotes the consideration of values in the prioritisation and justification of actions by health professionals, researchers, and policymakers that may impact the health and well-being of patients, families, and communities. National Ethics Committees (NECs), comprised of experts and stakeholders, may be established by the government to ensure robust assessment of issues and offer empirically- informed identification of ethical solutions and policy recommendations. International partners, such as the World Health Organization and UNESCO, may provide technical assistance to governments in operationalizing, training, and setting agendas for NECs.

Bioethics is an interdisciplinary field encompassing a broad range of domains and issues.

In public health, the key issues include balancing public good against individual liberty; prioritizing treatment and prevention; health promotion and equity; and the implications and limits of public health surveillance. In health research, key issues include what value the research has for the communities from which the participants are drawn, who benefits, how the participants are chosen, and how the rights and well-being of participants are protected. In clinical care, key issues include informed consent, decision-making capacity, and privacy and confidentiality. For health systems, key issues include resource allocation, corporate partnerships, workplace ethics, equitable access, individual vs.

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population health, and public accountability. Finally, in global health, key issues include cooperation between countries to address the social determinants of health (e.g. poverty, malnutrition, poor education, unhealthy living conditions, lack of access to health care), “brain drain” from resource-poor countries to wealthier countries, cultural relativity, and data and benefit-sharing in international research.

With competing interests under limited resources, a Bioethics framework provides for a systematic analysis and resolution of conflicts through the evidence-based application of general ethical principles, such as respect for personal autonomy, beneficence, justice, utility, and solidarity. Bioethics provides a framework of values and principles, such as personal autonomy, beneficence, justice, utility, and solidarity, through which the ethical significance of such key issues as listed in the previous paragraph can be understood and analysed, and within which ethically appropriate solutions can be developed.

THEME

Reducing Inequities through Solutions-Oriented Bioethics

We have chosen to develop previous discussions and respond to the call for action through a focus on equity in health and what solutions bioethics can offer to inequity. The concept of equity in health is an ethical principle, closely related to human rights, in particular, the right of all humans to experience good health. Bioethics has a role to play in addressing inequity both nationally and internationally. Solutions- orientated bioethics draws on the practical and sometimes pragmatic aspects of bioethics, where real- world situations are ethically analyzed using the bioethics framework. Achieving equity in health involves ethical deliberation across public health, global health, research and clinical ethics.

Inequities are unfair differences in such things as people’s opportunities for well-being. Differences in opportunities for well-being are unfair when they are related to such things as unjust social privilege, arising for instance from discrimination. The presence or absence of social privilege often determines the health status of individuals. Pursuing equity in health means trying to reduce avoidable gaps in health status and health service accessibility between groups of different levels of social privilege. Equity recognises that different people with different levels of advantage may require different approaches and resources to get equitable outcomes.

OBJECTIVES

The objectives of AP-NEC2 are:

1.        To highlight the role of bioethics in reducing inequity in the context of priority global, regional, and national issues;

2.        To develop solutions, including to identify opportunities for multisectoral engagement and international cooperation, towards advancing action and measuring progress on priority issues; and

3.        To strengthen national capacities for bioethics, including through national ethics/bioethics committees.

PROGRAMME

AP-NEC 2 will consist of six substantive sessions:

- Session 1 will explore the ethical challenges posed by the impacts of climate change on inequities in health.

- Session 2 will explore the ethics of how emerging technologies may increase or decrease inequities in health.

- Session 3 will explore ethics in the context of indigenous peoples, both to address the health inequities faced by population groups and to consider ethical frameworks developed within such cultures.

- Session 4 will explore challenges and opportunities for strengthening national capacities for bioethics, including the establishment, operationalization, training, and agenda setting for NECs.

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- Session 5 will invite delegations to develop plans for next steps towards advancing action on priority issues.

- Session 6 will invite delegations to consider how progress should be measured, for reflection at future meetings.

VENUE

The meeting will be held at the Icon Room, Te Papa, New Zealand’s national museum. Te Papa is a landmark building in the heart of Wellington. It’s an engineering feat, rich with symbolism, and accessible to all. https://www.tepapa.govt.nz/visit/venues/spaces/icon

DINNER AND CULTURAL EVENT

Dinner will be held at Te Marae, a unique venue for special occasions.  It features beautiful contemporary Maori carvings, floor-to-ceiling stained glass window, and requires minimum theming.  A dramatic, intimate space that lights beautifully at night to create an ambience both elegant and welcoming.  If weather permits, pre-dinner drinks could be served on the terrace adjoined to Te Marae. Another option for pre-dinner drinks will be in Signs of a Nation. Please see photos of Te Marae on our website: https://www.tepapa.govt.nz/visit/venues/spaces/te-marae.

LANGUAGE

Language will be English only.

COUNTRY INFORMATION

Surrounded by nature and fueled by creative energy, Wellington is a compact city with a powerful mix of culture, history, nature, and cuisine. Fuel your visit with strong coffee and world-class craft beer – Wellingtonians are masters of casual dining, with plenty of great restaurants, night markets, and food trucks on offer. See https://www.newzealand.com/int/wellington/.

HOTEL ACCOMMODATION

Sponsored participants will be provided accommodation at:

QT Wellington90 Cable St, Te Aro, Wellington 6011, New ZealandPhone: +64 4-802 8900

Website: https://www.qthotelsandresorts.com/wellington/hotel-rooms/

Self-funded participants options available:

Bay Plaza Hotel40-44 Oriental Parade, Oriental BayWellington, New Zealand

Phone: Phone: +64 4-385 7799

Website: https://www.bayplaza.co.nz/

Copthorne Hotel Wellington100 Oriental Parade, Oriental BayWellington, New Zealand

Phone: +64 4 385 0279

Website: https://www.millenniumhotels.com/en/wellington/copthorne-hotel-wellington-oriental-bay

WEATHER

Vibrant and uplifting, spring in New Zealand lasts from September to November.

Average daytime temperatures during spring range between 19 degrees Celsius (66F) in the north to 16 degrees Celsius (60F) in the south. Expect a mixture of weather – crisp, sunny days can briskly change to cooler temperatures with spring showers. https://www.newzealand.com/au/feature/discover-spring-in-new-zealand/

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CURRENCY AND RATE OF EXCHANGE

New Zealand's unit of currency is the dollar (NZ$). All major credit cards can be used in New Zealand, with Visa and MasterCard accepted most widely. 1 New Zealand Dollar equals 0.68 United States Dollar. See https://www.newzealand.com/au/feature/new-zealand-currency/

TRAVEL ARRANGEMENTS

For sponsored participants, WHO will arrange the itineraries and deliver economy class or excursion fare air tickets, if applicable. For any deviation in travel arrangements beyond those offered by the sponsors, including extended stay in the New Zealand, the participant will bear the additional costs, if any.

Participants traveling at own cost are responsible for arranging their own itineraries and purchasing their own air tickets.

WHO will confirm with each participant to monitor flight details.

All participants are responsible for arranging their own transfer from and to the airport.

For information on flights to New Zealand see https://www.newzealand.com/int/flights-to-new-zealand/

VISA

Participants are responsible for having in their possession a valid passport on arrival. For a list of countries that are eligible for a visa waiver, see https://www.immigration.govt.nz/new-zealand-visas/apply-for-a-visa/tools-and-information/general-information/visa-waiver-countries . All other participants are required to obtain a visa to enter New Zealand.

WHO will confirm with each participant to verify validity of the passport, passport number, and date and place issued.

For country-specific visa information, please visit the website of the Immigration New Zealand https://www.immigration.govt.nz/new-zealand-visas/options/visit/explore-visitor-visa-options

INSURANCE

WHO does not provide insurance cover for participants or their belongings. Participants are expected to make their own arrangements for accident, illness and luggage insurance, if so desired.

SECRETARIAT

WHO responsible officer NEAC Secretariat

Ki-Hyun HahmHealth Law and Ethics Unit, Division of Health Systems,WHO Regional Office for the Western Pacific,P.O. Box 2932, United Nations AvenueErmita, Manila 1000, Philippines

Tel. No.: +63-2-528-9826Email: hahmk@who.int

Nic AagaardPrincipal AdvisorEthicsQuality Assurance and Safety,Health System Improvement and Innovation,Ministry of Health

DDI: 04 819 6859mailto:Nic_Aagaard@moh.govt.nz

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DOCUMENTS FOR THE MEETING

Materials will be forwarded electronically to participants by NEAC as they become available. Upon registration, participants will be given a link to all documents available.

STEERING COMMITTEE BIOGRAPHIES

Dana Wensley

Dana Wensley has a Ph.D. from the Centre of Medical Law and Ethics at King’s College, London, an LLB (Hons) from the University of Auckland, and an M.A. (Distinction) from King’s College, London. She is an experienced committee member with skills in health governance at a local and national level. She previously worked as a Research Fellow at the Human Genome Centre (University of Otago, New Zealand), and currently serves as a committee member on the National Ethics Advisory Committee (Wellington, New Zealand). Her focus is on issues that transcend the traditional boundaries between law, ethics, and politics.

Dana has a strong commitment to working across local and central government to enhance health and wellbeing. In 2016 she was elected to the Tasman District Council where she currently serves on a number of committees, specifically as the representative on the Positive Ageing Forum and Chair of the Accessibility for All Forum. She plays an active role in encouraging healthy communities that connect across health agencies, encouraging strong links between the council and central government in relation to active transport strategies, disaster planning, positive ageing strategies, urban design, water/ air quality, and climate change.

Dafna Feinholz

Dr. Dafna Feinholz Klip completed a degree and master (BA and MA 1987-1992) in Psychology at the “Universidad Iberoamericana”, as well as a Ph.D. in Psychological Research (1995- 1997). In addition, she got a

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Master degree in Bioethics at the “Universidad Complutense de Madrid”, Spain (2002-2005). She also completed courses on Ethical Issues in International Health Research at the School of Public Health at the Harvard School of Public Health, in Boston, Massachusetts (2000); and intensive and updating courses in Bioethics at the Kennedy Institute of Georgetown University (2003); as well as at “El Colegio de México”: “The Perspective of Social Sciences Reproductive Health.

She was the Head of the Reproductive Epidemiology Department at the Mexican National Institute of Perinatology; as well as the Research and Planning Director of the Women and Health Program, at the Ministry of Health (Mexico). She successively occupied the posts of Academic Coordinator of the National Commission of Human Genome at the Ministry of Health; and the Executive Director of the National Commission of Bioethics, achieving a more independent legal status for the National Bioethics Committees, drafting the first national guidelines for Research Ethics Committees and Clinical Bioethics Committees, training their members, and promoting the law at the parliament that is currently in vigour, to legally establish and differentiate both types of committees. She is the founder of FLACEIS (Latin American Forum of Ethics Committees in Health Research) and was the Chairperson (2000- 2006). Invited member of the international expert group, TDR-WHO: Drafting and translating Operational Guidelines for Ethics Committees. She was Mexico´s representative at the meetings of the Intergovernmental Bioethics Committee to discuss the UNESCO Universal Declaration on Bioethics and Human Rights.

Her experience with research ethics committees includes her past positions as: Secretary of the Research Ethics Committee at National Institute of Perinatology; Member of the ELSI Committee of the Consortium Promoting the Genomic Medicine Institute; Founder and External member and advisor for the constitution of the National Commission on Research Ethics of the National System of Social Security in Mexico (IMSS); External Member of the National´s Institute for Public Health Ethics in Research Committee; Member of the Family Health International (FHI) Protection of Human Subjects Committee.

Since September 2009, Dafna Feinholz is the Chief of the Bioethics Section, within UNESCO Social and Human Science Sector. In this capacity, she leads different activities aiming at reinforcing capacities of Member States to manage bioethical challenges and to identify the ethical, legal and social implications of cutting-edge science, emerging technologies and their application for sustainable development. She is also the responsible for the secretariat of UNESCO International Bioethics Committee (IBC) and World Ethics Commission of Science and Technology (COMEST).

Her main line of interest and experience are: reproductive health; unexpected pregnancy and abortion; gender; bioethics and reproductive health: research ethics, global bioethics ethics and democracy.

One of her recent distinction is “Awarded Honorary Fellowship of university of Central Lancashire” Uclan (2011).

She has published numerous articles in scientific journals as well as book chapters.

Neil Pickering

Neil is Associate Professor in the Bioethics Centre at the University of Otago. He has published on a range of topics within Bioethics, the Medical Humanities, and Education (in particular in relation to values teaching and learning). His primary area of research is the concept of disease.

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He was a member of the University of Otago Human Research Ethics Committee from 1999 to 2005. He was also on the Health Research Council of New Zealand Ethics Committee from 2005 to 2010 and was acting chair from 2007 to 2008. He was a member of the New Zealand Ministry of Health Guidelines Working Party (2017). He joined the National Ethics Advisory Committee (NEAC) in 2013, and is currently Acting Chair. He is also on the editorial board of the Journal of Bioethical Inquiry and a member of the committee of the Australasian Association of Bioethics and Health Law.

Aarati Shah

Dr Ararati Shah, MD, is working at Nepal Medical Council, Bioethics Advisory Committee, (National Body). Dr Shah Worked as Chair, Ethics Committee (ERB), Nepal Health Research Council. Dr Shah has been Professor, Senior Consultant Department of Oncology, National Academy of Medical Sciences, Kathmandu, Nepal and works in the Ethics Committee of the National Academy of Medical Sciences, Bir Hospital in Kathmandu.

Dr. Mahmood Uz Jahan

Dr. Mahmood-uz-Jahan is a medical graduate. He completed his medical graduation (MBBS) from Mymensingh Medical College under University of Dhaka, He did Doctor of Medicine (MD) on Radiology and Imaging from Bangabandhu Sheikh Mujib Medical University (BSMMU) also completed Master in Bioethics and Global Public Health (MBGPH) degree from American University of Sovereign Nation (AUSN).

At present he is working as a Director, Bangladesh Medical Research Council (BMRC) since 2013. He also working as Member secretary of National Research Ethics Committee (NREC) of Bangladesh.

At BMRC his job is involved with administrative, ethics, research and publication related matters. He has very keen interest to learn about ethics specially biological ethics involving human subjects. He is also working as an assistant editor of BMRC journal named “BMRC Bulletin”. He believes that morality is very important for individual daily life. He has a beautiful wife with three children.

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Lynley Anderson

Lynley is an Associate Professor and Head of Department at the Bioethics Centre, University of Otago.

In her role she teaches ethics and professional issues to undergraduate and postgraduate health professional students. Lynley has carried out research on the ethical issues in sports health care, and from that has written codes of ethics for health professional bodies including the Australasian College of Sports and Exercise Physicians (ACSEP) (2008, 2016), and the NZ Physiotherapy Board and Society (2011, 2017). She has also recently been involved with drafting guidelines for the use of mesenchymal stem cell use in sports health care for the ACSEP. Lynley was a founding editor of the Journal of Bioethical Inquiry and editor of the New Zealand Bioethics Journal.

Lynley steps down from the role of chair of the New Zealand Health Research Council Ethics Committee in 2019. She also served for six years on the Ethics Committee for Assisted Reproductive Technologies (ECART), and has served on various ethics committees at the University of Otago.

Peter Cowley

Dr Peter Cowley has been living and working in the developing world for over 20 years. He has been stationed in Uganda, Cambodia, Georgia, Barbados and now in the Philippines where he is the Acting Director, Division of Health Systems and also Coordinator for Health Policy and Finance unit at WHO Regional Office for the Western Pacific. Dr Cowley has worked for the World Bank (Washington DC) and WHO/PAHO (Barbados) where he was a senior Health Systems Strengthening advisor specializing on cost-effectiveness, public finance and insurance based issues. Whilst working in Uganda, Cambodia and Georgia, he led numerous large USAID,

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ADB and GFATM funded projects focusing on the private sector, e-health, HIV/AIDS and TB. He has authored numerous peer reviewed publications and book chapters on health finance topics. He was also the chief designer of the essential health package work for World Bank 1993 WDR – Investing in Health publication. Dr Cowley is a Phi Beta Kappa graduate of the University of Texas Austin and received his MD from the Baylor College of Medicine in Houston, Texas, USA. He completed his residency at Johns Hopkins in International Health where he received an MPH and concurrently focused his studies on health economics.

Bang-Ook Jun

Bang-Ook Jun has been a Professor of Biology at Gangneung-Wonju National University since 1986. He received his Ph.D. in Seoul National University, Department of Botany in 1986. He completed his postdoctoral training at the University of Florida, Department of Botany. He was a Visiting Professor of University of Calgary, Faculty of Communication and Culture and is now a Visiting Professor of American University of Sovereign Nations, Arizona. He was the President of Gangneung-Wonju National University in 2012-2015. He was the President of Korean Bioethics Association in 2008-2009. He has contributed to the Asian Bioethics Association as Vice-President for Korea in 2010-2014 and as President since 2016. He has written articles including “Ethical Issues on the Human Embryonic Genome Editing” and “The Ethics of Therapeutic Gene Editing Research.” His main research focus is on the ethics of emerging biotechnologies.

Māui Hudson

Associate Professor Maui Hudson is based in the Faculty of Māori and Indigenous Studies at the University of Waikato. He is an interdisciplinary researcher who explores the interface between Indigenous Knowledge, Science and Technology. He co-authored the Te Mata Ira Guidelines for Genomic Research with Māori, and the He Tangata Kei Tua Guidelines for Biobanking with Māori. Professor Hudson is also the co-convener for SING Aotearoa (Summer Internship for Indigenous Genomics), a co-founder of Te Mana Raraunga Māori Data Sovereignty Network, and a member of the Senior Leadership Team for Genomics Aotearoa.

Advisor

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Dr Roli Mathur, Ph.D

Dr. Mathur is heading the ICMR Bioethics Unit and plays an important role towards developing ethics policy for biomedical and health research in India. She coordinated the finalization and release of the National Ethical Guidelines for Biomedical Research on Human Participants, 2017 and was member core group for preparing National Ethical Guidelines for Research in Children, 2017. She was coordinator for ICMR Commission which finalized the Definitions pertaining to End of Life Care, 2018. She successfully engaged with >6000 persons in Dissemination Programs to create awareness about Ethical Guidelines in the year 2018. She coordinated preparation and release of the Common Application Forms for Ethics Committees, 2019.

Since 2017, she is Member of Executive Committee, Council of International Organizations of Medical Sciences (CIOMS) developing an International Guideline for Clinical Research in Resource Limited Countries. Since 2015, she is special invitee to WHO-SEARO Advisory Committee on Health Research (ACHR) for ethics. She is ICMR nominee to represent India at the WHO-UNESCO Global Summit of National Ethics Committees.

Earlier, she was trained to be a molecular geneticist at AllMS, New Delhi and received the “Young Scientist Award” for her thesis. She was a university topper during graduation as well as post graduation. She was short term fellow at National University Hospital, Singapore and long term Fellow supported by WHO for training on “Bioethics and Ethics Committee Administration” in USA. She is trained as an “International Surveyor” by WHO-SIDCER and has surveyed more than 10 ethics committees in India and across South East Asia. She was FERCAP Steering Committee member and is presently member of FERCI; Chairperson and Member of several ethics committees, Member Secretary of Central Ethics Committee on Human Research which serves as the National Ethics Committee in India.

At ICMR she coordinated the first Newborn Screening program for Inborn Metabolic Disorders, Task force on Lysosomal Storage Disorders, Short Term Studentship (STS) program for UG medical students and has number of National International publications to her credit.

At present she is engaged in developing a number of policy documents namely; Handbook on ICMR Ethical Guidelines, Guidelines for Common review of Multicentre Research, Standard Operating Procedures for ethics committees, Advance Directives for End of Life Care and Withholding Withdrawing Life Support at End of Life and Conflict of Interest Policy for India.

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