Canadian Institutes of Health Research–Institute of Aging: Profile: Ethics, Health Research, and Canada's Aging Population

Introduction

Canada's population is getting older. Statistics Canada estimates that by 2031 there will be nine million persons over the age of 65, accounting for 25 per cent of the population. Within the same approximate time frame, the number of Canadians with Alzheimer's disease or related dementia is expected to double to more than one million persons. The aging of the Canadian population has significant policy implications for all levels of government in Canada. In April 2009, the Senate Special Committee on Aging released a report with 32 recommendations concerning health care, income security, housing, and other services (Senate, Special Senate Committee on Aging–Final Report, 2009). The 2010 fiscal sustainability report of the Parliamentary Budget Officer emphasised the economic implications of the demographic transition: "The ageing of the population will move an increasing share of Canadians out of their prime working-age and into their retirement years. With an older population, spending pressures in areas such as health care and elderly benefits are projected to intensify" (Office of the Parliamentary Budget Officer, 2010, p. ii).

While debate persists about the impact of an aging population on health care costs, it is clear that older persons generally require more health care than younger people. The Canadian Institute for Health Information reports that "spending concentrates among the elderly, and toward the end of life" with per capita expenditures rising sharply for those over age 70 (Canadian Health Services Research Foundation, 2002; Canadian Institute for Health Information, 2009, p. 48).

These realities raise important issues for health research, and this commentary discusses several ethical issues concerning health research at the societal (macro) level and individual (micro) level. Provision of appropriate services to optimise the health and well-being of older Canadians depends on research to elucidate biological, psychological, social, and other aspects of aging. Timely knowledge and technology transfer processes to apply research outcomes to practice is also a crucial step. From a macro-level perspective, under-inclusion of older persons in some areas of research raises concern about the ethical allocation of research investments and the application of potentially "age inappropriate" health research knowledge to a large segment of the population. Ethical considerations of distributive justice may call for more research that is specific to older persons, yet, at the individual level, elders may face special vulnerabilities as research participants. Studies of conditions that involve mental decline (e.g., Alzheimer's disease, age-related dementia) or involving persons living in institutional care settings raise ethical concerns about voluntary and informed consent, and about substitute decision making on behalf of participants who lack mental capacity at the time of recruitment, or whose capacity deteriorates during the study.

Issues at the Societal Level

From a macro-level perspective, research on aging has been neglected compared to other areas of health research, raising concern about the ethical allocation of research investments and the "orphaning" of certain groups and/or conditions. The British Geriatrics Society has pointed out that research funding, and health resource allocation in general, has "been skewed towards higher tech treatments and 'sexier' conditions such as cancer or ischaemic heart disease which affect younger people and away from the needs of older people with incurable long term conditions" (British Geriatrics Society, 2009, p. 128). This criticism is borne out by a recent analysis of studies on long-term conditions published since 2002: 23.5 per cent of the studies focused on cancer, 17.6 per cent studied cardiovascular diseases, while 1.4 per cent concerned dementia (Knapp & Prince, 2007).

This gap in research is being addressed to some extent by longitudinal studies that follow older participants for a number of years to examine various factors that impact health and other aspects of aging. For instance, the Canadian Longitudinal Study on Aging aims to follow approximately 50,000 Canadians aged 45 to 85 for at least 20 years to examine physical, psychological, social, economic, and other changes that affect individuals as they grow older (see http://www.clsa-elcv.ca). Studies with older adult participants are important not...