Open access peer-reviewed chapter - ONLINE FIRST

The Older Adult as a Research Participant: Are Ethic Review Committees too Protectionistic?

Written By

Kerstin Roger

Submitted: 15 May 2023 Reviewed: 16 May 2023 Published: 06 June 2023

DOI: 10.5772/intechopen.1001897

Intergenerational Relations - Contemporary Theories, Studies and Policies IntechOpen
Intergenerational Relations - Contemporary Theories, Studies and ... Edited by Andrzej Klimczuk

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Intergenerational Relations - Contemporary Theories, Studies and Policies [Working Title]

Dr. Andrzej Klimczuk

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Abstract

In this chapter, we explore the ways in which we can better understand how university-based ethic review committees, and the protocols associated with research that include older adults, both help and hinder research, and how decisions can be shaped by and contribute towards narratives of ageism. Conceptions of what it means to age are rooted in historic biomedical ideas about the body, in juxtaposition to a richer understanding of the lifespan, history and diversity, intersectionality, and social determinants of health. This chapter explores how decisions made within ethic review committees in universities may be seen to protect older adults from unethical research practices and associated harms, and though well-intentioned, contribute towards the reproduction of ageist discourses and what it means to grow older, to be vulnerable, and to be in need of protection. This chapter draws insights gained from twenty years of research in multi-national, provincial, and local teams, teaching all levels of aging related courses at a local university, and work in the community. This research has been located in Canada where the Tri-Council Policy Guidelines require all research that includes human subjects to be approved a priori through a local research ethic review committee.

Keywords

  • exclusion
  • older adults
  • ethic review committee
  • protectionism
  • research eligibility
  • capacity

1. Introduction

This chapter will explore the ways in which the governance of ethics in research through university-based ethic review committees can be shaped by and contribute towards discourses of ageism—namely, false assumptions about older adults and their ability to participate in research. The position of the chapter is that ethic committees can better serve older adults as research participants, and in that way, furthering knowledge on aging. Global issues surrounding aging research will be examined, including a focus on intergenerational relationships (e.g. caregivers, adult children, professionals, researchers). It is true that historical concepts of ‘aging’ are rooted in biomedical norms about the body, in direct juxtaposition to the impact on our bodies of social determinants of health. Referencing work by the United Nations, the World Health Organization, and the International Federation of Aging, this chapter explores how normative discourses on aging can shape decisions and contribute towards or reproduce ageist norms on ethic review committees, thus impacting research conducted with older adults in a number of ways. The work draws on insights gained from over twenty years of research in multi-national, provincial, and local teams, teaching all levels of aging related courses, and work in the community with older populations. This research has been located in Canada where the Tri-Council Policy Guidelines require all research that includes human subjects to be approved a priori through a local research ethic review committee.

Undoubtedly, research with an increasingly aging global population requires intergenerational relationships front and centre. Intergenerational relationships span families that surround older adults, friends and communities, as well as professionals who embody intergenerational relationships as their patients/clients grow older. We have seen through COVID-19 (Corona Virus Disease of 2019) how ageism played out, in which the pandemic highlighted the serious and often tragic hidden epidemic of abuse or neglect of older adults in many contexts. This abuse and neglect was often rooted in intergenerational relationships. A silver lining has been that a deeper understanding of aging and age-isms has emerged about older adults.

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2. Global context of research with older adults

In 2019, the United Nations released a report on the current state of aging among the world population, illustrating unique implications for older adults and policy makers [1]. Every country is experiencing population growth among older people, meaning that younger generations are engaging more frequently through their families, work and daily life with people who are older. According to the United Nations (2019), there are 703 million people aged 65 and over living on earth as of 2019, and this number is expected to double by 2050. The population of older people has increased over the past 30 years from 6 percent in 1990 to 9 percent in 2020 and is projected to rise to 16 percent by 2050—this means that one in six people on earth will be age 65 or older by 2050. Older adults aged 65 are expected to live, on average, an additional 17 years. In this way, the aging boomer population is also spread across a 30-year period, so while some are turning 65 in 2025, others are turning 75 or 85 in that year with radically different experiences. Increasingly we see centenarians, resulting in diverse and unique cohorts within what is called ‘the aging experience’. The old-age dependency ratio tends to compare the number of people aged 65 and older to younger cohorts overall (those between age 20 and 64), yet this cohort will be difficult to describe as unified. Those who celebrate turning 100 in Canada may have little in common with those turning 80 on the other side of the world, and younger generations are impacted by this varied group of older adults every day. Aging is everyone’s context.

Population aging has been fastest in Eastern and South-Eastern Asia, as well as in Latin America and the Caribbean, resulting in new norms and professions for younger generations related to those who are aging. Adults under 50 are experiencing new ideals about aging, professional options with those who are aging, as they watch those around them age. By way of example, not only in health care, new technology innovation is more and more being assessed by an aging demographic with real consumer power: tech innovations are increasingly vetted by older adults who can use them and want to spend money on them. In this way, older adults are not a homogenous group.

According to United Nations (2019), women live longer than men by an average of 4.8 years, even while this gap is expected to narrow over the next three decades. This means that the sex balance among persons aged 80 and over will become more even, although women may continue to live longer than men. The International Federation on Aging (IFA) released their report, “Addressing Inequalities Summit” shortly after the 14th Global Conference on Aging in 2018 [2] reporting on health equity implications for women as they age. Women in many cultures experience the burden of sexism across the lifespan, and as they age, ageist assumptions about being older result in a double effect (sex and age). In many cultures, older women are treated unequally under the law and common norms, not just as they age but throughout life. According to the IFA, financial instability among older women in developing countries such as Kenya (as one example) can contribute to their experiences of poverty and loneliness. Further, the report highlights that older LGBTQ2S+ (Lesbian Gay Bisexual Trans Queer 2 Spirited +) face unique challenges to healthy aging due to institutional discrimination in the form of stigma, prejudice, and judgment over a lifetime. Sexual orientation and gender identities that do not match a heterosexual or cisgender norm are people at risk as they age as well. LGBTQ2S+ face ageist attitudes in addition, making it hard for them to feel welcome in mainstream aging communities/long term care housing options.

Another example arguing against the homogeneity of aging is regarding the age cutoff point for aging. Much variability exists, as the earlier point about old-age dependency suggested. In the AIDS/HIV (acquired immune deficiency syndrome/human immunodeficiency virus) community [3], aging is considered anyone over 50, since surviving beyond 50 has historically been a true medical success and objective. Now, aging among folks living with AIDS/HIV has been extended past 60. A success worth celebrating. Official government pensions in some countries result in an older adult being eligible for pensions at age 65 [3] (https//:historymuseum.ca/cmc/pensions). And yet, in other places in the community [4] (https//:dealhack.ca/canadian-senior-discounts), we see ‘senior’s discounts’ for anyone 55 and over, and so the age cutoff point varies greatly. While many organizations still use this term, ‘senior’ is no longer seen to be a legitimate term for older adults. See ‘When it comes to older adults, language matters’, [5] https://agsjournals.onlinelibrary.wiley.com/doi/full/10.1111/jgs.14941. For people with intellectual disabilities [6], the old age cut-off point may be 40, due to life expectancy.

This global snapshot has the aim of demonstrating, by way of example, that homogeneity in aging defined by a specific age cutoff point may be a faulty construct. At least, it may simply predominantly be a Western demonstration of economic work force standards. These examples are meant to invite us to consider that all older adults have the right to share their diverse experiences through research participation, and as these relate to their daily lives across a wide range of socio-demographic realities and cohorts. All need to be invited to share through research how their individual aging experiences shapes a broader understanding of aging [7, 8, 9, 10]. Research participation allows them to characterize what aging means to them, to speak on their own behalf and on behalf of their own communities, and to reflect the diversity of their lives as older adults, regardless of which community they belong to, how they define becoming older, or how aging is defined and characterized by their culture, or by the mainstream.

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3. The World Health Organization (WHO)

The WHO released a report in 2011 titled, Standard and Operational Guidance for Ethic Review of Health-Related Research with Human Participants [11]. This report highlights the process and conduct that a Research Ethic Committee (REC) must follow when evaluating proposals that involve human participants. RECs are obligated to establish and follow a system when reviewing research. This may include consulting laws and other guidelines when considering research applications to ensure the framework of the proposed study is within the parameters of what is legal. Reviewing previous judgments and decisions regarding similar research proposals may also impact a REC’s decision on current or future proposals involving a similar study design and/or groups of research participants. Community input is (or should be) sought by RECs so they have mechanisms in place in which they can receive community feedback. In our experience, community-based inclusion/oversight was not embedded in local ethic review committees. These sometimes function with academic Faculty as volunteers only, with increasing administrative duties related to any one ethic protocol. RECs utilize a checklist to ensure that all the relevant criteria for evaluating research ethic are covered in a proposal. These checklists may include, but are not limited to, items such as the scientific research design and conduct of the study, risks and potential benefits of the study, recruitment and selection of research participants, protection of privacy and confidentiality among research participants, and the implications of the research findings among the larger community. However, having a checklist approved at the beginning of a study, does not require, or ensure that relational practices for community-based relationships are maintained over time. A protective feature is that those of us who conduct community-based research often have long standing good relationships with communities, otherwise recruitment and continuing research would not be possible. While checklists and protocols are necessary and have inherent value, the success of being ethical throughout a study conducted over years, does not depend on appropriately filled out forms housed at an administrative level of the university [12].

The 2011 WHO report goes on to state that to avoid bias and other judgment, research proposals should be treated independently from each other. No two research proposals are the same; even though the group of participants may have similar characteristics, the parameters of the proposal may be completely different. Some applications might include more psychological risk to participants than others. This reality may reduce the likelihood that RECs overgeneralize based on population characteristics, however, varying viewpoints can be introduced into decision-making when involving input from the community. The overarching views of the community may persuade the decision of RECs (committees that may be comprised of people who advocate for a strong protectionist stance) to accept more innovative and diverse types of research proposals, based on needs seen by community members.

The WHO report references the importance of educating REC members. Opportunities are available for REC members to become skilled on topics with which they are not familiar. Training on the basic principles of ethics in research is available for REC members. Given experiences with ethic review committee comments, members were not always well versed in research related to aging and make decisions based on an ageist lens that overlay protectionist decisions about who might or might not be included in aging related studies. When older adults are not included, their views cannot be collected, and new knowledge cannot be developed about aging.

The 2011 report refers to the role of the entity that establishes an REC. This overview is responsible for ensuring the REC is following guidelines. For example, entities conduct evaluations on the judgments and reasonings behind a REC’s decisions to approve or deny a research proposal. This evaluation ensures that their work is consistent with respect to research ethics. The report stresses the importance of clear dialog between RECs and researchers throughout the research process, not just at the beginning. Researchers are responsible for informing the REC of any changes made to the research project that may harm the level of protections among the human participants. RECs can request random reports from the researcher regarding the progress of the study at any time during the project timeline. In this way, ongoing discussion, responses in writing, and overall engagement between RECs and researchers can lead to educating members of ethic review committees on key issues.

RECs can also be overly involved, seen as micromanaging through administration. This may lead to a false sense of security that if things are documented and signed, ethical approaches are being employed in the community. Micromanaging by relying on administrative checklists, forms, techniques, and documents, may not rigorously evaluate the strong ties and ethical relationships which exist between researchers and their communities.

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4. Topical literature on ethics and research: are older adults vulnerable?

4.1 Methods

Health science library experts were consulted to determine relevant databases and a proper search strategy. The most appropriate databases included EBSCOhost, Google Scholar, UM Libraries, Google Advanced and Scopus. Overall, the search results from EBSCOhost were limited and we were unable to find sources that fit the inclusion criteria for this study (see below). The same was observed on Scopus, in fact, many of the results retrieved on Scopus were similar to EBSCOhost.

The following search string was used to scan these databases: i. Elders OR elderly OR “older people” OR seniors AND Violence OR abuse* OR neglect* OR trauma* AND “research method*” OR “research ethic*” OR “ethic* research*”. Google Scholar was very effective in identifying useful articles. In the advanced search feature on google scholar, we imputed “Elderly “research methods” ethic*” in the box titled “Find articles with all of the words” as well as “with at least one of these words”. We filtered the publications to include only items between 2015 and 2022.

We were able to find a few relevant book chapters by searching in the University of Manitoba (UM) library database. The search strategy we used in this database was (seniors OR “older people” OR elderly OR elders) AND “research methods” AND ethic*; and we filtered the results to include only articles published between 2015 and 2022.

We used Google Advanced to identify gray literature on the topic, but not much exists. Regarding keywords, we found that the term “older adults” retrieved the fewest number of relevant items. So, we focused on the term “elderly” by adjusting the search strings accordingly.

The search for scholarship thus resulted in a small sample specific to aging, and material in other closely related fields (e.g., disability). A review of found articles revealed two central (and potentially contradictory) concepts; (1) the need for ethic committees to ensure that the central tenet of ethic among older research participants is covered, and (2) an ethic committee’s protectionist views concerning the fragility or vulnerability of research involving older adults. A careful review of the literature indicates that concepts of ‘over- protection’ in issues pertaining to aging and research participation, can and do shape decisions about older adults and participation in research.

For example, Arrant [13] believes that older adults represent a fragile population and cites research to argue in favor of being vigilant when considering the costs and benefits of conducting research with older adults. The author portrayed older adults primarily as a vulnerable cohort in need of protection, without a deeper reflection of the diverse experience of aging or considering a strength-based approach to aging. Locher et al. [14] similarly states that older participants are vulnerable and implies that special consideration is needed to study older people, specifically due to their age.

Alternately, Dresser [15] believes that autonomy rests in participants, not researchers or ethic review committees; making the argument that an older person should be allowed to participate in research if they deem themselves to be able and willing. Dresser explores that ethic committees may be too protectionist and suggests that ethic committees should relax their restrictive stance. Panchana [16] similarly argued that the protectionist stance of research ethic review committees’ harms research. By shifting the focus towards protection of older adults, with less emphasis on the autonomy of older adults and their rights to pursue their own potential, even as research participants, may reflect a narrow view of aging and research participation. According to Panchana, research ethic committees may also be motivated to govern by emphasizing the legal risks of research for the institution, thereby protecting universities first. The overall benefit for an increasingly aged society is to better understand the diverse plethora of aging, which is missed when protectionism based on ageist narratives, occurs. Among the recommendations discussed by Panchana, is the need for self-reflection and education among ethic review committees when considering the ethic of research involving older adults, the willingness for ethic committees to collaborate with other gerontological research before arriving at decisions, and the importance of researchers to be cognizant of the fact that gerontological experts may not be available to sit on ethic committees due to busy schedules.

It was clear that international research ethics committees and human research ethic councils tend to view older adults as a vulnerable group de facto, emphasizing the process of weighing the benefits and burdens of permitting their involvement in research studies [13, 14, 15, 16]. Consideration of strengths and abilities is shadowed by the specter that older people are simply more vulnerable due to their age, while it should be understood that vulnerability of some older adults is to be safeguarded by researchers. For example, in the case of conducting research on abuse against older adults, researchers have a responsibility to share privileged information with authorities, family members, or other personnel if they believe the participant is presently in danger [17]. As well, clinical assessments to establish capacity vulnerabilities and protect participants from harms in research participation, should be in place, regardless of age for any population. But capacity assessment does not indicate someone ought not to participate in research. And furthermore, these are not age specific risks (anyone can lack capacity in a number of ways for a number of reasons at any time in life) – so, it is important to note that clinical assessments for capacity do not transfer easily to assessing ability to participate in research. Research eligibility and clinical assessment for capacity are two different areas, and this chapter argues that they should be kept distinct and treated as such.

The question of ‘capacity’ arises as a frequent and important issue to the preparation of an ethic protocol involving older adults in research. The protection of people who may have limited ‘capacity’ if they do not understand the research question, is a grave issue; and their protection is warranted regarding the possible harms of inclusion in research through which they could be violated. Abuse, discrimination, and exploitation must be conceptualized and considered for any population not just those aging. We must therefore understand the definition of capacity from a non-medical viewpoint as well, and its application in the case of research participation. Martino and Schormans [18] declare that not including willing research participants in the case of those living with disabilities is equally harmful to leaving them out, especially if the research topic is deemed to be relevant to the lives of those living with capacity issues. There are always risks involved in research participation for any age group and any population; however, capacity should not be a standardized reason for removal from participation, and it ought not to be automatically associated with age. Should we not want to better understand the experiences of those at any stage of cognitive development, including a deteriorating one? Considering the benefits and the strengths individuals bring to research, and especially when memory loss may be a concern, is also to honor older adults in their full autonomy and individuality.

Battistuzzi et al. [19] imply that informed consent is more difficult to obtain among older adults, due to a decline in cognitive abilities. Denying the right of people labeled as ‘disabled’ to be included in research or basing this decision on a pre-emptive view of someone’s age, is equally if not more problematic. Battistuzzi et al. identified several main ethical issues to consider when conducting research with older adults. Among their findings, the researchers argued that older adults experience a decline in cognitive abilities, which in turn negatively impacts their understanding of, and ability to provide informed consent. We suggest that alternatives exist, or may be developed further, to support research inclusion. For example, researchers might try to be accommodating during this process by reading the consent form aloud to the participants, and asking questions to make sure they understand to what they are consenting [14]. Building on what researchers in the field of disability have developed may be useful here as well and bringing in the ethic of inclusion rather than exclusion.

Saghafi et al. [17] go beyond the issue of protectionist views employed by research ethic boards. These authors believe protecting the rights of older people requires a review of common definitions and legislations of capacity, and an understanding of cultural and religious differences among older people. The authors conclude that some older people are less likely to display competence for many reasons unrelated to capacity, and this can affect an older adult’s ability to participate in research. However, investigation is needed as to whether they should still be included as valuable research participants.

Bowman [20] questions the use of capacity assessments as a way through which to garner eligibility status for research participation and warns against the focus on capacity assessments for this purpose. He argues, as does the disability literature, that values placed on ‘competence’ primarily restrict access to a better understanding of cognition, or other daily lived experiences, and for our focus here, the experiences of older adults who may be living with memory loss. This view does not generalize to say that most or all older adults are suffering memory loss, just that those who are ought still to be considered as valid research participants for other reasons. In counterpoint, we ought not to assume that those labeled competent or ‘normal functioning’ always act rationally. A common biomedical discourse assumes that we are all ‘rational’ across the lifespan, and that as individuals we exist within a baseline norm at all points during our lives and throughout our lifespan. Research on human behavior, including addictions, grief reactions and depression, or responses to trauma over the lifespan, have shown that ‘normal baselines’ may not be the most appropriate frame within which to understand eligibility for research. Capacity regarding aging is not easy to define, and it remains a “multidimensional construct with important clinical, legal, ethical, social, and policy aspects” [21]. It may not be the best framework with which to determine eligibility for research participation in the case of older adults.

The contribution of community minded ethic review committee members would be another approach that welcomes an interdisciplinary team who would discuss decisions made in this regard [21, 22]. Sabatino and Wood [23] similarly maintain that capacity assessments towards research participation should not be based on previous diagnoses of competence and capacity, that they should be regularly reviewed, and they should consider by whom and in what setting questions are asked. Boxall and Ralph [24] speak to the tight over regulation of ethical governance at universities with the hope of preventing harms, suggesting this leans towards unnecessary conservatism resulting in barriers to people’s participation in research. These approaches may be well intentioned, but they rely heavily on imagining worst case scenarios, and then that view becomes normalized across all cases and creates a normative standard. Ethic review committees can keep in mind the ethic of inclusion, not just protection.

Another related theme in the literature is recruitment in smaller communities. The pool of participants available in each community, and the reality that only so much research can be conducted on the same groups of people over time, is a credible issue. Smaller sample sizes due to small communities become an ethical issue, especially when many researchers are trying to access the same pool of aging people for a wide range of research topics [25]. Building relationships in any community is key, however, flexibility may be required if there is research fatigue, and research participants simply are not able to provide enough time and expertise in all the areas local researchers would like them to. In the example of caregiving and aging, it is understood that caregivers of older adults may not have sufficient time to contribute towards important and often valuable research. Caregiving research and approving ethic protocols would do well to consider how to support the costs of research participation (e.g., parking, respite costs) for caregivers, especially given that researchers gain from the participation of underpaid and often overworked caregivers. This is an ethical concern! Researchers have the duty to assess all ethical dilemmas from an older person’s point of view in order to develop the best approach to conduct their research, protecting the well-being of older adults and potential caregivers [26]. Diversification of regions for sampling, thus seeking broader communities, may be one solution reducing research participation fatigue. This does not imply that older adults ought to be left out of research participation, and especially not based on their age.

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5. Ageism as a theoretical frame: how it impacts ethics in research

What frames these contexts? Ageism [27] is stereotyping and discrimination of individuals or groups based on their age. Age discrimination towards older adults is not a new concept but rather, an issue that continues to evolve within the framework of current society. Robert Neil Butler [28] coined the term ageism, arguing that it functions as another form of bigotry and essentially represents a “deep seated uneasiness on the part of the young and middle-aged—a personal revulsion to and distaste for growing old, disease, disability; and fear of powerlessness, ‘uselessness’, and death”. Ageism is not considered an official theory; however, the framework of ageism is important to consider when thinking about application in the field of aging. Researchers can engage in ageism and may also reflect internalized ageism as they themselves age. Ethics review committee members can practice ageism as they make decisions about research participation—‘is this person incapable, based on their age, to participate in research?’. Or, ‘does this person deserve specific protections based on their age alone?’. Ageism is distinguished from the other ‘isms’ by the fact that every human being is likely to experience ageism by simply living long enough, however, ageism promotes younger generations to see older adults and imagine that they are different from themselves [29]. In this way, aging and ageism are an intergenerational issue.

Stereotypes of aging, much like those living with a disability, can function across societies and can be further contextualized within an intersectional lens [30]. Intersectionality suggests that social categories are mutually constitutive, and they often reinforce each other to shape complex social realities beyond but related to biology. Gender, race, ability, socioeconomic status, sexual orientation, and Settler status by way of example, can each interface with ageist discriminations when conducting research on older adults. While this has sometimes been called ‘double/triple jeopardy’, it is relevant to consider how ageism is deeply layered within broader social, historical, and cultural contexts in ways that include behaviors and daily practices about what is considered ‘normative’. The idea remains that ‘normative aging’ exists and is embedded in institutional practices, and by way of example, in practices associated with ethic review committees. Aging still verges on being seen predominantly as a bio-medical event, with slippage as to the invisible impacts which are social and resource based, policy oriented and cultural in nature. According to the 2015 WHO report on aging and health, social and historic stereotypes about growing older can also become self-fulfilling prophecies, in which older adults are seen to fit a certain stereotype and then internalize those stereotypes. The WHO report suggests older adults may then be promoted into social roles and positions which simply serve to fulfill stereotyped narratives: inability or lack of potential to contribute economically, loneliness and isolation as normative, decreased mobility and cognitive lack of engagement as expectable, all regardless of actual abilities and desire to contribute.

These factors emerge easily and continuously in the classroom on aging topics as well, in which undergraduate and graduate students bring to class significantly detailed understandings of aging as a physical and biological experience. In class, we begin to unpack the ways in which health care systems promote quality of life across the lifespan (and into aging), and, how equity can shape a lifetime impacting health and wellness, and ultimately biology. This critical thinking exercise helps students unpack other socio-demographic features like poverty or gender, further defining a diverse aging experience, and students begin to deepen their view of aging as predetermined and biological. This learning process changes their view of themselves as constantly aging beings, themselves, and deepens their understanding of the diversity of aging populations.

The field of critical disability studies has done significant work in moving us away from understanding disability as a medical understanding of the body [31]. As with disability studies, we see that issues of capacity and biologism are entrenched in a societal view of aging. Reframing the lens of research participation of older adults rather towards resiliency, a strength-based focus, their capacity for social contribution demands a counternarrative. To what extent can we reframe research participation considering the ‘agency’ of older adults; how can we best promote and invite that agency in older adults regarding research participation? How do we understand collectivity as a society, and ‘social capital’ as relating to our older populations?

Arguing against the homogeneity of older adults, it is important to understand that not all older adults are able to make significant decisions in their lives if they lack capacity, but this is true for anyone across the lifespan and not specific to aging. Knowing this requires a renewed approach to aging research which might be reframed in the language of ethic committees’ decision making. Not unlike the history of disability, in which disability was predominantly conceptualized as a physical medical problem without consideration for the environment, norms and values [32], or, in which people with intellectual disabilities were not included in research at all other than biomedical [33]; ethic review committees assessing ‘risk’ pertaining to aging (e.g., capacity) may be reworking a normative aging narrative about fragility, especially when it prevents research participation. There is value in including all folks, even those with capacity issues, but how to do so ethically remains a key question.

What does it mean to be older, seen to be vulnerable, and seen to need protection as a cohort? The Tri-Council Policy Statement 2 (TCPS 2) states clearly, ‘the principle of Justice holds that individuals, groups or communities should neither bear an unfair share of the direct burdens of participating in research, nor should they be unfairly excluded from the potential benefits of research participation. Inclusiveness in research and fair distribution of benefits and burdens should be important considerations for researchers, research ethic boards (REBs), research institutions and sponsors. Issues of fair and equitable treatment arise in deciding whether and how to include individuals, groups or communities in research, and the basis for the exclusion of some’. [34].

This chapter explores how ethic review committees generalizing older adults as a single homogenous cohort, and seeing protectionism prima fascia, are buying into an ageist trope. Hamilton [35] states about ethics’ oversight, that ‘we have developed an unwarranted belief that rules plus compliance equals protection’. New approaches to inclusion in research participation for all older adults, and consideration for those in need of protection (how, why, on which basis), need to be developed [36, 37, 38, 39].

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6. Recommendations for research ethics boards: what needs to change?

Based on the findings presented, key recommendations include i. Equity and diversity through an intersectional lens, including age cutoff points, ii. Understanding a biomedical approach to aging, and the assumption of the vulnerability of all those who are aging, and iii. Training and education of ethic review committee members.

Equity and diversity: Creating an overall understanding of diversity to the aging experience applies in the inclusion of older adults who are trans, Indigenous, disabled, living with dementia, who define aging differently by culture, have lived beyond 45 with HIV, survived COVID-19 in a nursing home, and so on [40, 41]. Specialty areas within aging may warrant unique kinds of expertise on the ethics review committee [42]. Timmerman [43] suggests that too much standardization relies too heavily on removing the very aspects of research which could be of interest, and by way of example, relying too heavily on ethic protocol forms. As the TCPS 2 states, we should work to find ways to include people so we can better understand their experiences. As van den Hoonard and Hamilton [44] suggest, considering ethics as a problem to be solved through an administrative solution (e.g., forms for the participant to sign and the researcher to demonstrate showing that the research participant is not vulnerable) is not sufficient.

Understanding a biomedical approach to aging: Members of ethic review committees may have little or no experience in research on aging and may make decisions about research eligibility assuming a biomedical approach. Disablism is understood as ‘a set of assumptions and practices that promote differential or unequal treatment…because of actual or presumed disabilities’ [45] and this matches the limiting rationale that faces older adults through ageism in research participation. We cannot use capacity assessments or concepts of IQ/cognitive ability steeped in a biomedical approach, intended for clinical purposes, to measure the value of research engagement. Diagnostic labels intended for other purposes (e.g., treatment adherence, care needs) become markers for (ex)- inclusivity in research. Van den Hoonard [44] states that there are always potential risks in research participation, and those risks need to be clearly explained guarding the well-being of potential research participants; however, harms and risks can also be overstated and not reflect the benefits and intent resulting in a particular kind of study. Risks and fears about research inclusion are often imagined, worst case scenarios, and often are simply not very common – not a reason for systematic exclusion based on age.

Need for education and training: Educating ethic review committee members is essential, if they do not have an awareness and knowledge of aging research, and when a research protocol includes aging participants. This can include community members on the committee, but principally here, refers to academics who remain volunteers in this endeavor. It was our experience that an ethic review committee had asked curious questions misaligned with the research question, and after much back and forth over months, a simple question was answered: ‘do you have someone on your committee knowledgeable about aging research?” – “no’ was the answer. There is an urgent need to increase the responsibility of those entities that oversee REBs and select their members, and to enforce time and effort in training them appropriately, while encouraging ongoing participatory dialog [35].

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7. Conclusion

COVID-19, if anything, has taught us that younger generations (professionals and researchers, family, and communities) need to better understand the many diverse and daily lived experiences of older adults [46]. Older adults, their health and life experiences must be honored while understanding the value of their autonomy and resilience. Deeply layered historic and cultural ageism framed what led to many tragic responses throughout COVID-19 and around the globe, in long term care and especially, in the early days of the pandemic [47]. Older adults living in isolation with no care where their professional caregivers had abandoned them, or informal caregivers knew not what to do, and nursing homes where care was just not sufficiently available due to staff shortages. In the early days of the pandemic the term ‘boomer remover’ occurred frequently in the media [47], an alarming statement made by younger generations! We need to hear from older adults, no matter who they are and what their experiences are.

This Chapter explores the need to expand inclusion in research eligibility criteria, in which research protectionism taken too far does not promote a better understanding of diverse aging realities around the globe, and by doing so, becomes its own ‘boomer remover’ [47].

Finally, a strength-based approach to research ethics including older adults would value older adults more fully. In turn, this would help to reduce diagnostic labels of ‘capacity’ as an eligibility criterion specifically attached to age, underscoring older adults’ diverse stories as valuable for further theorizing about aging. In return, this would assist in building new models and frameworks of care and practice towards continuing knowledge transfer, with the goal of bettering the lives of older adults in all communities around the globe.

Agency and willingness to participate in research can be coupled with detailed information about presumed risks, and an ongoing conversation with researchers, as well as a cautionary approach by researchers to remain inquisitive and relational as they embark on their approach to ethics-based research. Gaining access to older adults as research participants is incredibly relevant in this context, and further restraints through protectionism has not been helpful in expanding our knowledge base.

What does it mean to grow older, to be seen as vulnerable whether one is or not, having lived a full life only now to be viewed as someone in need of protection? Is this appropriate? Does it expand our field of vision? Perhaps this is a good research question to ask of older adults.

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Acknowledgments

I would like to acknowledge my mentors, research assistants who have worked with me over the years in many studies, my undergraduate and graduate students, and the communities/participants in which I have collected data. Without their work and questions, this Chapter could not have been developed.

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Conflict of interest

None.

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Written By

Kerstin Roger

Submitted: 15 May 2023 Reviewed: 16 May 2023 Published: 06 June 2023