COUNCIL NEWS

COUNCIL NEWS

he National Council is pleased to announce that Dr. Janet Storch will assume the responsibilities of President of NCEHR in July 1999.

Dr Janet Storch has served on the National Council on Ethics (Bioethics) in Human Research since 1994, during which time she has served as Chair of the Panel on Consent, as Vice President and as Finance Committee Chair. She is a graduate of the University of Alberta with a baccalaureate in nursing, a masters’ degree in health services administration, and a PhD in sociology. She began her career as a staff nurse with the VON in Montreal, and later as staff nurse at the Montreal Children’s Hospital, following which she became sessional lecturer in nursing at the University of Alberta. She eventually joined the health services administration program where she served as professor and director of the MHSA program in the Faculty of Medicine at U. of A., prior to becoming Dean of Nursing at the University of Calgary. In July 1996 she took her present position as Director of the School of Nursing at the University of Victoria.

She has authored and edited several books and monographs on Canadian health policy, patients’ rights and on ethical-legal issues in health care. She has also conducted research on professional - bureaucratic conflict, the effectiveness of clinical ethics committees in Canadian hospitals, and on public perceptions of health ethics issues, such as end of life treatment decisions and resource allocation in health care. Dr. Storch has served on numerous provincial and national boards and committees, including Secretary Treasurer of the Alberta

Foundation for Nursing Research, Chair of the Provincial Health Ethics Network Steering Committee in Alberta, member of the B.C. Ministers’ Advisory Committee on Health Ethics, and Chair of the Canadian Nurses Association Ethics Advisory Committee. She served as President of the Canadian Bioethics Society in 1992. During her sabbatical year in 1996, she was a Visiting Fellow at the Kennedy Institute of Ethics in Washington D.C.

Council also wishes to express its gratitude for the devotion and counsel that Dr. Abbyann Lynch, one of the founding members of the NCBHR in 1989, has given NCEHR over the years. Her mandate ended in June 1998.

Congratulations are also in order for Dr. John Foerster, who was chosen as Vice-President and Professor Daphne Maurer, who was elected to be a member of the Executive Committee.

The National Council is also pleased to welcome five new members who joined our Council in June 1998: Dr. Françoise Baylis, Dr. Ken Davey, Dr. Barbara McGillivray, Dr. Charles Weijer and Mr. Barney Masuzumi. Their updated biosketches appear below.

We expect to find the reactions from communities affected by the Tri-Council Policy Statement to be very varied. It may seem surprising to those working in the biomedical area, where ethical issues in research make media headlines and are of increasing public concern, but one of the challenges may be simply to get some disciplines and institutions interested in the REB process and aware of its public importance. Local REBs can play an important educational role in that regard. Their work must proceed on a basis of trust and credibility. Educating and communicating openly with their colleagues strengthens those elements.

Presently we work in a system that expects voluntary compliance to guidelines. Dr Gordon Crelinsten made clear at the retreat the implications of the frequent lack of compliance found in the only survey of REBs in Canada. He gave appropriate emphasis to the pressing need to move beyond the laissez-faire approach to evaluation of REB activities. In anticipation of developments in that area, NCEHR commissioned a document by Louis-Nicolas Fortin and Thérèse Leroux titled "Reflections on Monitoring Ethics Review of Research with Human Subjects in Canada". It was published in Communiqué 1997; 8 (1) and is available on our website. That document discusses the advantages and disadvantages of (a) Informal Visits, (b) Visits within a Formal Framework, (c) Accreditation or Certification and (d) Power to Investigate. I encourage you to read that document.

The tasks facing the REB process are many: education of REB members, issues of confidentiality, consent, communities, privacy, contracts, dispute resolution, conflict of interest, monitoring, harms and benefits, proportional risk, genetics, qualitative research and the increasingly important problem of resources for the REB, to name a few. NCEHR looks forward to working with its communities and sponsors as we deal with these many issues.

This year, NCEHR participated in several exhibitions: the 66th Congrès de l’Acfas, Université Laval, the ACMC-ACTH-CAME Annual Meeting, Ottawa, and the Congress of Social Sciences and Humanities, University of Ottawa. Such events help NCEHR to become more visible and better known in the community at the local and national level. They also help NCEHR to follow the evolution of research ethics issues through direct contacts in the research community. There is more to learn about us. Come visit us on the web at http://ncehr.medical.org.

BIOSKETCHES OF NEW MEMBERS

Françoise Baylis, PhD, is an Associate Professor in the Faculty of Medicine, Office of Bioethics Education and Research and in the Department of Philosophy at Dalhousie University. She received her doctorate in Philosophy with a specialization in Biomedical Ethics in 1989 from the University of Western Ontario.

Dr. Baylis has a long- standing interest in research ethics, pædiatrics ethics, and women’s health. In 1990, she was a researcher for the MRC Guidelines for Research on Somatic Cell Gene Transfer. Since 1993, she has been a member of the National Council on Ethics in Human Research (NCEHR) Committee on Consent. In that capacity, she co-authored the Discussion Document Facilitating Ethical Research: Promoting Informed Choice. More recently, she served as external reviewer for the Tri-Council Working Group on guidelines for research with human subjects, and has continued to provide the Medical Research Council of Canada with feedback on various versions of the Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans.

As regards her own research, Dr. Baylis is currently working on a number of funded projects, including: Human Identity and Enhancement Technologies; Assent and Dissent in Research Involving Children; and Research on Gene Transfer: Ethical Considerations.

Professor Kenneth G. Davey, PhD is a Distinguished Research Professor of Biology at York University. He was educated at the University of Western Ontario (BSc, 1954, MSc, 1955) and at Cambridge University (PhD, 1958).

After holding fellowships in zoology at the University of Toronto and Cambridge, he became Director of the Institute of Parasitology at McGill University. He moved to York in 1974, where he has served as Chair of Biology, Dean of Science and Vice-president (Academic Affairs). He is an endocrinologist interested primarily in insects and other invertebrate animals. He has had a number of committee assignments for the Natural Sciences and Engineering Research Council of Canada, most recently as chair of the Program Review Committee. He was a member of the editorial committee which drafted the final version of the Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans. He is Vice-President of the Royal Canadian Institute, which seeks to communicate contemporary science to the general public, and President of l’institut de la vie, an international organization devoted to the principle that science ought to serve humanity. He is a fellow of the Entomological Society of Canada and of the Royal Society of Canada, and is an Officer of the Order of Canada.

Mr. Barney Masuzumi is the Research Director for the Dene Cultural Institute of the Northwest Territories. He continues in this capacity the wide range of policy-related services and counsel that went with his previous position with the Government of the Northwest Territories, as Special Advisor on Traditional Knowledge. He is a Board Member of the National Task Force on Northern Research, the Aurora Research Institute of Aurora College, and the Centre for Traditional Knowledge in Ottawa. Mr. Masuzumi offers also his experiences gained as a Senior Administrative Officer for a municipality, a Wildlife Officer, a legal land surveyor, and most significantly, as a former trapper and hunter. His current duties include teaching the "Research Issues" course to the students of the Centre for Indigenous Environmental Resources (CIER), an accredited program associated with the University of Manitoba.

Dr. Barbara C. McGillivray, MD, FRCPC (Pædiatrics, Medical Genetics), FCCMG, is Professor of Medical Genetics at the University of British Columbia (UBC). She chairs the UBC Clinical Research Ethics Board and is a member of both the B.C. Children’s Hospital and B.C. Women’s Hospital ethics committees.

She is a member of the MRC Standing Committee on Ethics, and was a member of the Tri-Council Working Group writing the Code of Ethical Conduct for Research Involving Humans. She practises clinical genetics at B.C. Children’s Hospital and the B.C. Cancer Agency. Her research interests include gender anomalies, prenatal diagnosis, and inherited cancers.

Charles Weijer, MD, PhD, is a Bioethicist and Assistant Professor of Medicine in the Office for Bioethics Education and Research at Dalhousie University in Halifax, Nova Scotia.

From 1991 to 1996, Prof. Weijer worked with the Clinical Trials Research Group at McGill University. In September 1996, he moved to Toronto to join the staff at Mount Sinai Hospital, the Samuel Lunenfeld Research Institute, and the University of Toronto. He took up a tenure-track appointment at Dalhousie University in September 1998. Prof. Weijer has published about thirty peer-reviewed articles dealing with research and clinical ethics and he is currently editing Benjamin Freedman’s last book, Duty and Healing: Foundations of A Jewish Bioethic, for Routledge Press.

Prof. Weijer has been the chair of NCEHR’s Committee on Ethics of Research Design since 1997, and is a member of the Medical Research Council of Canada’s Standing Committee on Ethics. He is one of only two Canadians commissioned to prepare a background paper on research ethics for the U.S. National Bioethics Advisory Commission.

Prof. Weijer is currently engaged in collaborative work with the Clinical Trials Research Group at McGill University, the Department of Clinical Bioethics in the Clinical Centre at the U.S. National Institutes of Health, the George Soros Foundation’s Project on Death in America, and the U.S. Centers for Disease Control. In 1998, he received an Operating Grant and Scholarship Award from the Medical Research Council of Canada as well as a 5-year Clinical Research Scholar award from the Faculty of Medicine, Dalhousie University to further his work on ethical issues in randomized controlled trials and genetic research.

The Council is pleased to announce the appointment of Chantal Beauvais as NCEHR’s Education and Site Visit Coordinator. Chantal Beauvais is a graduate of the Dominican College of Philosophy and Theology in Ottawa and from the University of Ottawa.

Ms. Beauvais is a lecturer in the Nursing and Education Departments of the Université du Québec à Hull and in the Philosophy and Counselling Departments at Saint Paul University. She has been a member of the Faculty of Arts Research Ethics Committee at the University of Ottawa since 1995. In the past, she has served as a military officer and as a Chaplain for various Cadet Summer Instruction Centres.