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The dissociative chemisorption of F2 on the Si(100)(2 x 1) surface saturated with 1 monolayer (ML) of fluorine is investigated as a function of the incident F2 translational energy. The relatively small effect of translational energy implies a late barrier in the potential energy surface for the interaction of F2 with Si-Si bonds.

Presents a study which examined the alignment of iodine[sub2] seeded in supersonic beams of helium and argon. Use of the magnetic precession technique; Results; Discussion.

Presents a comparison of the finite-element method and the spline variational theory, or spline variational elastic laminate technology (SVELT) for the three-dimensional stress analysis of a rectangular plate with a circular hole under uniaxial tension. Methods; Results; Conclusion that SVELT can reduce problem sizes or degrees of freedom while obtaining results of comparable accuracy.

The article demonstrates the complexity of social class systems with particular attention to the geographic, demographic, and institutional diversity of Canadian society. A distinction is made between class and status, the former based on power in the marketplace and control of productive resources, and the latter involving social reputation and influence based on consumption, style of life and so forth. Utilizing this distinction, it examines the nature of power in Canadian society and the overt manifestations of conflict in protest movements derived from common class situations. In that ideology has historical and geographic components as well as class dimensions, the protest movements in Canada often have espoused diverse ideologies while pursuing similar goals of change in power and class relationships. Parties in terms of the Canadian situation have modified political ideas developed in Europe or the United States frequently. It also examines regional, ethnic and status dimensions as they have impinged upon, or resulted from, power relationships in Canada. Regional and historical variations in population growth patterns, in economic development, and in institutional patterns have produced different class structures across Canada. Other related variables such as migrations, external economic domination, the disparate interests of center and periphery, and the close relationship between political and economic development have all had a significant impact on the development of class and class related concepts in Canada.

The dissociative chemisorption of O[sub 2] on the Al(111) surface is investigated by means of a Monte Carlo simulation that incorporates two mechanisms that have been proposed for this reaction in the literature: single atom abstraction and two-atom adsorption that generates translationally hot atoms on the surface. A comparison is made to the much-debated STM results of Brune et al. [J. Chem. Phys. 99, 2128 (1993)], in which the oxygen island density (number of islands per binding site) was determined as a function of coverage. Since the two-atom channel has been discussed heavily in the literature, we focus primarily on the abstraction mechanism. We show that atom abstraction in its basic form is incompatible with the STM results; however, we propose two simple modifications that enable atom abstraction to reproduce the STM results. In the first modification, the probability of dissociation is higher at sites next to preexisting O adatoms. In essence, we are proposing that the increased Al-O bond strength at sites next to preexisting O adatoms [Jacobsen et al., Phys. Rev. B 52, 14954 (1995)] stabilizes the transition state for dissociation. If atom abstraction is assumed to be the only operative mechanism, and if its probability increases by a factor of ∼10 next to a site that is occupied versus unoccupied, the STM island density data can be approximately reproduced. In the second modification, the abstracted atom is permitted to make a single hop in the direction of a preexisting, nearby O adatom. The allowance of merely a single, directed hop has a dramatic effect on the coverage dependence of the island density. © 2000 American Institute of Physics. [ABSTRACT FROM AUTHOR]

Abstract Background In 2009, Dr. Paolo Zamboni proposed chronic cerebrospinal venous insufficiency (CCSVI) as a possible cause of multiple sclerosis (MS). Although his theory and the associated treatment (“liberation therapy”) received little more than passing interest in the international scientific and medical communities, his ideas became the source of tremendous public and political tension in Canada. The story moved rapidly from mainstream media to social networking sites. CCSVI and liberation therapy swiftly garnered support among patients and triggered remarkable and relentless advocacy efforts. Policy makers have responded in a variety of ways to the public’s call for action. Discussion We present three different perspectives on this evolving story, that of a health journalist who played a key role in the media coverage of this issue, that of a health law and policy scholar who has closely observed the unfolding public policy developments across the country, and that of a medical ethicist who sits on an expert panel convened by the MS Society of Canada and the Canadian Institutes of Health Research to assess the evidence as it emerges. Summary This story raises important questions about resource allocation and priority setting in scientific research and science policy. The growing power of social media represents a new level of citizen engagement and advocacy, and emphasizes the importance of open debate about the basis on which such policy choices are made. It also highlights the different ways evidence may be understood, valued and utilized by various stakeholders and further emphasizes calls to improve science communication so as to support balanced and informed decision-making.

The inaugural Canadian Conferences on Translational Geroscience were held as 2 complementary sessions in October and November 2023. The conferences explored the profound interplay between the biology of aging, social determinants of health, the potential societal impact of geroscience, and the maintenance of health in aging individuals. Although topics such as cellular senescence, molecular and genetic determinants of aging, and prevention of chronic disease were addressed, the conferences went on to emphasize practical applications for enhancing older people's quality of life. This article summarizes the proceeding and underscores the synergy between clinical and fundamental studies. Future directions highlight national and global collaborations and the crucial integration of early-career investigators. This work charts a course for a national framework for continued innovation and advancement in translational geroscience in Canada., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Aromatic polyurea has garnered assiduous research due to its excellent impact, shock, abrasion, moisture, and chemical resistance properties. Polyurea can be used in protective coating and impact mitigation applications but is inevitably exposed to harsh deployment conditions such as extended ultraviolet (UV) radiation. Fourier Transform Infrared (FTIR) spectroscopy, Terahertz-time domain spectroscopy (THz-TDS), and Excitation-Emission Matrix spectroscopy (EEMS) deciphered the effects of UV radiation on radiated polyurea samples under ambient and nitrogen-rich conditions. Samples were radiated continuously for up to 15 weeks in increments of 3 weeks. Comprehensive FTIR analyses revealed a monotonic increase in disordered hydrogen bonding as a function of exposure duration in an ambient environment. Otherwise, marginal changes were observed in UV-radiated samples under nitrogen. The hydrogen bond length exhibited significant variations in the former compared to their nitrogen atmosphere counterparts. The results infer the nitrogen shielding effect, protecting polyurea from the photodegradation and photo-oxidation observed in samples radiated under the ambient atmosphere. THz-TDS spectra affirmed the FTIR results by probing changes in the complex refractive index. Terahertz spectral peaks associated with torsional vibrations of intermolecular hydrogen bonds in polyurea were notably correlated with increased exposure duration in the ambient atmosphere. Changes in the complex index as a function of exposure duration under nitrogen are minimal. The excitation-emission spectra of polyurea samples reveal a strong fluorescent behavior in 9-week and 12-week ambient-exposed polyurea due to cluster-triggered emission mechanisms. The results synthesized based on three different spectroscopy techniques paint a holistic portrait of the adverse effects of extended ultraviolet radiation of macromolecules deployed in harsh environmental conditions., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023 The Author(s). Published by Elsevier B.V. All rights reserved.)

Medical assistance in dying (MAiD) is the Canadian equivalent of Physician aid-in-dying (PAD) in the United States. Through changes to the eligibility criteria for MAiD in 2021, Canada now has one of the most permissive assisted dying regimens in the world. This study describes Canadian genetic counselors' experiences, knowledge, and preparedness to discuss MAiD with their patients. Survey responses were collected from Canadian genetic counselors (n = 44) and were followed by semi-structured interviews with 14 survey participants. Survey data were analyzed using descriptive statistics, and interview transcripts were analyzed using phronetic iterative analysis and an interpretive description approach. Survey data revealed that genetic counselors have discussed MAiD with patients referred for cancer, neurologic, metabolic, connective tissue, and cardiac indications (n = 18, 40.9%). While most thought that it was important for genetic counselors to be knowledgeable of (n = 41, 93.2%) and prepared to discuss MAiD (n = 43, 97.7%), many were not familiar with the eligibility criteria (n = 27, 61.4%) and the process for accessing MAiD in Canada (n = 29, 65.9%). Interview participants described discussions about MAiD that were initiated by themselves or their patients. Most participants felt prepared to explore a patient's thoughts about MAiD when the patient initiated the discussion but did not feel well-prepared to share detailed information about MAiD. Participants were interested in education and professional guidance to assist them in preparing to discuss MAiD. Learning objectives were developed based on participants' suggestions to assist genetic counselors in their clinical work and self-directed research and to aid in the development of professional guidelines and educational materials for practicing genetic counselors and genetic counseling trainees. As genetic counselors continue engaging in discussions about MAiD, it is critical that these sensitive conversations are approached with increased knowledge and awareness of MAiD legislation, the ethical issues surrounding MAiD in Canada, and relevant patient resources., (© 2024 The Authors. Journal of Genetic Counseling published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors.)

Canada and California each introduced legislation to permit medical assistance in dying in June, 2016. Each jurisdiction publishes annual reports on the number of deaths that occurred under their respective legislations in the previous years. The numbers are disturbingly different. In 2021, 486 individuals died under California's End of Life Option. In the same year 10,064 Canadians died under that country's Medical Assistance in Dying (MAiD) legislation. California has a slightly larger population than Canada, and while medically assisted deaths as a percentage of total deaths remained virtually unchanged in California from 2020-2021, Canada saw a 30% increase from 2020 to 2021. This essay examines some of the factors propelling Canada down the slippery slope of medically assisted suicide, as well as those that may be keeping California and other US jurisdictions from taking the slide. At a time of increasing pressure in many jurisdictions (both nationally and internationally) to liberalize access to medical assistance in dying, some lessons from this comparative analysis are offered.

Background: While genomic data sharing can facilitate important health research and discovery benefits, these must be balanced against potential privacy risks and harms to individuals. Understanding public attitudes and perspectives on data sharing is important given these potential risks and to inform genomic research and policy that aligns with public preferences and needs., Methods: A cross sectional online survey measured attitudes towards genomic data sharing among members of the general public in an Eastern Canadian province., Results: Results showed a moderate comfort level with sharing genomic data, usually into restricted scientific databases with controlled access. Much lower comfort levels were observed for sharing data into open or publicly accessible databases. While respondents largely approved of sharing genomic data for health research permitted by a research ethics board, many general public members were concerned with who would have access to their data, with higher rates of approval for access from clinical or academic actors, but much more limited approval of access from commercial entities or governments. Prior knowledge about sequencing and about research ethics boards were both related to data sharing attitudes., Conclusions: With evolving regulations and guidelines for genomics research and data sharing, it is important to consider the perspectives of participants most impacted by these changes. Participant information materials and informed consent documents must be explicit about the safeguards in place to protect genomic data and the policies governing the sharing of data. Increased public awareness of the role of research ethics boards and of the need for genomic data sharing more broadly is also needed., (© 2023. BioMed Central Ltd., part of Springer Nature.)

We describe public preferences for unexpected genomic findings and explore predictors of preferences using an online survey in an Eastern Canadian province. Items measuring attitudes toward features of unexpected findings and genomic sequencing concerns were entered in logistic regression models predicting interest in unexpected findings. Very high levels of interest were observed in unexpected findings for treatable disorders and carrier results, with lesser interest in unexpected findings for non-treatable disorders and unclassified variants. Respondents who endorsed items measuring features of patient control and choice over their genomic data and testing options were 3-5 times more likely to be very interested in receiving unexpected findings. Respondents with high genomic sequencing concerns were less interested in the return of any unexpected result. Self-reported history of a genetic condition was significantly related to interest in receiving most categories of unexpected genomic information, while prior use of direct-to-consumer testing was significantly related only to interest in the return of unexpected genomic findings for disorders not currently treatable. Findings highlight the need for specific elements of information and transparency regarding the return of unexpected findings and can inform the development of patient-centered materials and return of results policies., (© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Introduction: The growth of global sequencing initiatives and commercial genomic test offerings suggests the public will increasingly be confronted with decisions about sequencing. Understanding public attitudes can assist efforts to integrate sequencing into care and inform the development of public education and outreach strategies., Methods: A 48-item online survey was advertised on Facebook in Eastern Canada and hosted on SurveyMonkey in late 2018. The survey measured public interest in whole genome sequencing and attitudes toward various aspects of sequencing using vignettes, scaled, and open-ended items., Results: While interest in sequencing was high, critical attitudes were observed. In particular, items measuring features of patient control and choice regarding genomic data were strongly endorsed by respondents. Majority wanted to specify upfront how their data could be used, retain the ability to withdraw their sample at a later date, sign a written consent form, and speak to a genetic counselor prior to sequencing. Concerns about privacy and unauthorized access to data were frequently observed. Education level was the sociodemographic variable most often related to attitude statements such that those with higher levels of education generally displayed more critical attitudes., Conclusions: Attitudes identified here could be used to inform the development of implementation strategies for genomic medicine. Findings suggest health systems must address patient concerns about privacy, consent practices, and the strong desire to control what happens to their genomic data through public outreach and education. Specific oversight procedures and policies that are clearly communicated to the public will be required., (© 2021 The Author(s) Published by S. Karger AG, Basel.)

Purpose: We have identified 27 families in Newfoundland and Labrador (NL) with the founder variant TMEM43 p.S358L responsible for 1 form of arrhythmogenic right ventricular cardiomyopathy. Current screening guidelines rely solely on cascade genetic screening, which may result in unrecognized, high-risk carriers who would benefit from preemptive implantable cardioverter-defibrillator therapy. This pilot study explored the acceptability among subjects to TMEM43 p.S358L population-based genetic screening (PBGS) in this Canadian province., Methods: A prospective cohort study assessed attitudes, psychological distress, and health-related quality of life (QOL) in unselected individuals who underwent genetic screening for the TMEM43 p.S358L variant. Participants (n = 73) were recruited via advertisements and completed 2 surveys at baseline, 6 months, and 1 year which measured health-related QOL (SF-36v2) and psychological distress (Impact of Events Scale)., Results: No variant-positive carriers were identified. Of those screened through a telephone questionnaire, >95% felt positive about population-genetic screening for TMEM43 p.S358L, though 68% reported some degree of anxiety after seeing the advertisement. There were no significant changes in health-related QOL or psychological distress scores over the study period., Conclusion: Despite some initial anxiety, we show support for PBGS among research subjects who screened negative for the TMEM43 p.S358L variant in NL. These findings have implications for future PBGS programs in the province., (© 2021 The Author(s) Published by S. Karger AG, Basel.)

ELSI (Ethical, Legal, and Social Issues) is a widely used acronym in the bioethics literature that encompasses a broad range of research examining the various impacts of science and technology on society. In Canada, GE 3 LS (Genetics, Ethical, Economic, Environmental, Legal, Social issues) is the term used to describe ELSI studies in the context of genetics and genomics research. It is intentionally more expansive in that GE 3 LS explicitly brings economic and environmental issues under its purview. ELSI/GE 3 LS research is increasingly relevant in recent years as there has been a greater emphasis on "translational research" that moves genomic discoveries from the bench to the clinic. The purpose of this chapter is to outline a range of ELSI-related work that might be conducted as part of a large scale genetics or genomics research project, and to provide some practical insights on how a scientific research team might incorporate a strong and effective ELSI program within its broader research mandate. We begin by describing the historical context of ELSI research and the development of GE 3 LS research in the Canadian context. We then illustrate how some ELSI research might unfold by outlining a variety of GE 3 LS research questions or content domains and the methodologies that might be employed in studying them. We conclude with some practical suggestions about how to build an effective ELSI/GE 3 LS team and focus within a broader scientific research program.

Aim: To survey the general public about whole genome sequencing interest, including pharmacogenomic testing, and to identify information important for sequencing decisions. Patients & methods: An online survey of 901 members of the general public in an eastern Canadian province. Results: Interest in whole genome sequencing, including pharmacogenomic testing, was high with few differences among demographic variables. Issues identified as very important to sequencing decisions included familial implications of testing, whether treatment was available for conditions tested and knowing who could access genomic information. Most respondents would value support when interpreting sequencing results. Conclusion: Findings reveal the kind of information and support users of sequencing services would value and could inform the implementation of sequencing into care in ways that accord with public preferences and needs.

Background: People at risk of developing hereditary cancers associated with Lynch Syndrome (LS) can be identified through universal screening of colorectal tumors. However, tumor screening practices are variable across Canada and few studies explore the perspectives of genetic counselors and pathologists about tumor screening. This study was conducted to better understand the barriers and facilitators of implementing universal tumor screening in health centers across Canada., Methods: An online survey about tumor screening programs was administered to genetic counselors and pathologists across Canada through communication channels of professional organizations. It was hosted on SurveyMonkey and accessible from October 2016 to March 2017., Results: Barriers to tumor screening included a lack of sustainable resources, including funding and genetic counselors. Respondents strongly identified the need for a coordinated, interdisciplinary approach to program planning with the "right people at the table." Respondents currently with a screening program provided advice such as carefully designing the program structure, developing patient and family follow-up protocols, and ensuring adequate resources (funding, staff, training for providers) were available prior to program initiation., Conclusion: There is no national approach to universal tumor screening in Canada. However, future efforts can be informed by the experiences of those centers that have already created a universal tumor screening program for LS. These data suggest the need for an interdisciplinary approach, initial and sustained funding, and careful advanced planning of program structures and policies., (© 2019 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Universal screening of all newly diagnosed colorectal cancer tumors can identify individuals at high risk for Lynch syndrome (LS), a hereditary cancer syndrome predisposing carriers to increased risk of colorectal, endometrial, and other cancers. To inform planning of a universal tumor screening program for LS in our jurisdiction, we undertook online surveys of Canadian pathologists and genetic counselors to describe existing tumor screening programs. Online surveys were hosted on SurveyMonkey between October 2016 and March 2017. Fifty-three pathologists and 66 genetic counselors completed surveys (total n = 119). While attitudes towards tumor screening were positive, considerable variability was observed in the existence of tumor screening, test ordering criteria, and practices. Most respondents indicated consent was not obtained for tumor screening nor were educational materials provided to patients; however, opting out of additional mutation testing in the event of a positive tumor screen was endorsed. Results add to the growing literature on providers' perspectives on population-based tumor screening programs and inform ways to offer these. Findings highlight the need to develop methods of patient education that allow meaningful opt-out decisions. The variability we observed also suggests the need for national standards and guidance on tumor screening for LS.

Newborn bloodspot screening programs are some of the longest running population screening programs internationally. Debate continues regarding the need for parents to give consent to having their child screened. Little attention has been paid to how meanings of consent-related terminology vary among stakeholders and the implications of this for practice. We undertook semi-structured interviews with parents ( n = 32), healthcare professionals ( n = 19) and policy decision makers ( n = 17) in two Canadian provinces. Conceptions of consent-related terms revolved around seven factors within two broad domains, decision-making and information attainment . Decision-making comprised: parent decision authority; voluntariness; parent engagement with decision-making; and the process of enacting choice. Information ascertainment comprised: professional responsibilities (including disclosure of information and time to review); parent responsibilities; and the need for discussion and understanding prior to a decision. Our findings indicate that consent-related terms are variously understood, with substantive implications for practice. We suggest that consent procedures should be explained descriptively, regardless of approach, so there are clear indications of what is expected of parents and healthcare professionals. Support systems are required both to meet the educational needs of parents and families and to support healthcare professionals in delivering information in a manner in keeping with parent needs.

Background: Health care organizations can be very complex, and are often the setting for crisis situations. In recent years, Canadian health care organizations have faced large-scale systemic medical errors, a nation-wide generic injectable drug shortage, iatrogenic infectious disease outbreaks, and myriad other crises. These situations often have an ethical component that ethics consultants may be able to address. Organizational leaders such as health care managers and governing boards have responsibilities to oversee and direct the response to crisis situations. This study investigates the nature and degree of involvement of Canadian ethics consultants in such situations., Methods: This qualitative study used semi-structured interviews with Canadian ethics consultants to investigate the nature of their interactions with upper-level managers and governing board members in health care organizations, particularly in times of organizational crisis. We used a purposive sampling technique to identify and recruit ethics consultants throughout Canada., Results: We found variability in the interactions between ethics consultants and upper-level managers and governing boards. Some ethics consultants we interviewed did not participate in managing organizational crisis situations. Most ethics consultants reported that they had assisted in the management of some crises and that their participation was usually initiated by managers. Some ethics consultants reported the ability to bring issues to the attention of upper-level managers and indirectly to their governing boards. The interactions between managers and ethics consultants were characterized by varying degrees of collegiality. Ethics consultants reported participating in or chairing working groups, participating in incident management teams, and developing decision-making frameworks., Conclusions: Canadian ethics consultants tend to believe that they have valuable skills to offer in the management of organizational crisis situations. Most of the ethics consultants we interviewed believed that they play an important role in this regard.

Objectives: Arrhythmogenic right ventricular cardiomyopathy caused by a TMEM43 p.S358L mutation is a fully penetrant autosomal dominant cause of sudden cardiac death where prophylactic implantable cardioverter defibrillator therapy significantly reduces mortality by returning lethal cardiac rhythms to normal. This qualitative study assessed the psychological ramifications of the implantable cardioverter defibrillator on recipients, their spouses and their mutation negative siblings., Design: Qualitative interview study., Participants: Twenty-one individuals (nine mutation positive, eight mutation negative and four spouses) from 15 families completed semi-structured interviews., Results: No theoretical assumptions about the data were made: inductive sub-coding was accomplished with the constant comparison method and cohesive themes across all respondent interviews were determined. All interviewees had a family history of sudden cardiac death and appropriate implantable cardioverter defibrillator therapy in themselves or family members. Average length of time with an implantable cardioverter defibrillator was 10 years. Major themes included: (1) acceptance and gratitude, (2) grudging acceptance, (3) psychological effects (on emotional and psychological well-being; functioning of the broader family unit; and relationships), and (4) practical concerns (on clothes, travel, loss of driving licence and the effects of an implantable cardioverter defibrillator discharge). These affected all family members, regardless of mutation status., Conclusions: Despite the survival advantage of implantable cardioverter defibrillator therapy, the intervention carries psychological and practical burdens for family members from kindreds manifesting p.S358L TMEM43 ARVC that does not appear to dissipate with time. A move towards integrating psychology services with the cardiac genetics clinic for the extended family may provide benefit., (© The European Society of Cardiology 2017.)

Consent processes for newborn bloodspot screening (NBS) are variable, with a lack of descriptive research that depicts how the offer of NBS is made to parents. We explored the experience, in practice, of consent for NBS. Semistructured interviews in two Canadian provinces were held with: (1) parents of children offered NBS (n=32); and (2) health-care professionals involved in the NBS process (n=19). Data on recollections of NBS, including consent processes, were utilized to identify emerging themes using the method of constant comparison. Three themes were relevant to NBS consent: (1) The 'offer' of NBS; (2) content and timing of information provision; and (3) the importance of parental experiences for consent decisions. Recollections of consent for NBS were similar between jurisdictions. Excepting midwives and their patients, NBS was viewed as a routine part of giving birth, with little evidence of an informed consent process. Although most parents were satisfied, all respondents suggested information about NBS be provided long before the birth. Accounts of parents who declined screening highlight the influence of parental experiences with the heel prick process in screening decisions. Findings further our understanding of consent in practice and highlight areas for improvement in parent-provider interactions.

This article discusses the response of our ethics consultation service to an exceptional request by a patient to have his implantable cardioverter defibrillator (ICD) removed. Despite assurances that the device had saved his life on at least two occasions, and cautions that without it he would almost certainly suffer a potentially lethal cardiac event within 2 years, the patient would not be swayed. Although the patient was judged to be competent, our protracted consultation process lasted more than 8 months as we consulted, argued with, and otherwise cajoled him to change his mind, all to no avail. Justifying our at times aggressive paternalistic intervention helped us to reflect on the nature of autonomy and the dynamics of the legal, moral, and personal relationships in the clinical decision-making process.

Plain English Summary: The paper discusses engaging older adults living with frailty and their family caregivers. Frailty is a state that puts an individual at a higher risk for poor health outcomes and death. Understanding whether a person is frail is important because treatment and health care choices for someone living with frailty may be different from someone who is not (i.e., who is fit). In this review, we discuss strategies and hurdles for engaging older adults living with frailty across three settings: research, health and social care, and policy. We developed this review using published literature, expert opinion, and stakeholder input (including citizens). Engaging frail older individuals will be challenging because of their vulnerable health state - but it can be done. Points of consideration specific to engaging this vulnerable population include:In any setting, family caregivers (defined to include family, friends, and other social support systems) play an important role in engaging and empowering older adults living with frailtyEngagement opportunities need to be flexible (e.g., location, time, type)Incentivizing engagement for researchers and citizens (financial and otherwise) may be necessaryThe education and training of citizens, health and social care providers, and researchers on engagement practicesPatient-centered care approaches should consider the specific needs of individuals living with frailty including end-of-life care and advanced care planningInfluencing policy can occur in many ways including participating at institutional, regional, provincial or national committees that relate to health and social care., Abstract: Older adults are the fastest growing segment of Canada's population resulting in an increased number of individuals living with frailty. Although aging and frailty are not synonymous the proportion of those who are frail increases with age. Frailty is not defined by a single condition, but rather a health state characterized by an increased risk of physical, mental, or social decline, deterioration of health status, and death. Recognizing frailty is important because earlier detection allows for program implementation focused on prevention and management to reduce future hospitalization, improve outcomes, and enhance vitality and quality of life. Even though older adults living with frailty are significant users of health care resources, their input is under-represented in research, health care decision making, and health policy formulation. As such, engaging older adults living with frailty and their family caregivers is not only an ethical imperative, but their input is particularly important as health and social care systems evolve from single-illness focused to those that account for the complex and chronic needs that accompany frailty. In this review, we summarize existing literature on engaging older adults living with frailty and their family caregivers across three settings: research, health and social care, and policy. We discuss strategies and barriers to engagement, and ethical and cultural factors and implications. Although this review is mainly focused on Canada it is likely to be broadly applicable to many of the health systems in the developed world where aging and frailty pose important challenges.

Purpose: Significant gaps remain in the literature on the economic burden of genetic illness. We explored perceived economic burden associated with one inherited cardiac condition, arrhythmogenic right ventricular cardiomyopathy (ARVC)., Methods: Semistructured interviews were held with individuals from families affected by ARVC. Data on the perceived financial and economic impacts of ARVC were used to identify emerging categories and themes using the method of constant comparison., Results: Data analysis revealed four themes that described participants' perceptions of the economic impact ARVC had on them and their families: (i) economic impact during childhood, (ii) impact on current and future employment, (iii) impact on current and future financial well-being, and (iv) no perceived economic impact., Conclusions: This study is the first to explore the economic burden of ARVC from the perspective of affected families. It revealed a number of perceived burdens, from employment and career choices to worry about insurance for self and children, decreased household spending, and the need for childhood employment. Findings highlight potential areas of discussion for genetic counseling sessions, as well as areas for future research.Genet Med 18 6, 584-592.

Background: Knowledge of molecular biology and genomics continues to expand rapidly, promising numerous opportunities for improving health. However, a key aspect of the success of genomic medicine is related to public understanding and acceptance., Design: Using community consultations and an online survey, we explored public attitudes and expectations about genomics research., Results: Thirty-three members of the general public in Newfoundland, Canada, took part in the community sessions, while 1024 Atlantic Canadians completed the online survey. Overall, many participants noted they lacked knowledge about genetics and associated research and took the opportunity to ask numerous questions throughout sessions. Participants were largely hopeful about genomics research in its capacity to improve health, not only for current residents, but also for future generations. However, they did not accept such research uncritically, and a variety of complex issues and questions arose during the community consultations and were reflected in survey responses., Discussion: With the proliferation of biobanks and the rapid pace of discoveries in genomics research, public support will be crucial to realize health improvements. If researchers can engage the public in regular, transparent dialogue, this two-way communication could allow greater understanding of the research process and the design of efficient and effective genetic health services, informed by the public that will use them., (© 2013 John Wiley & Sons Ltd.)