'The problem is small enough, the problem is big enough': a qualitative study of health technology assessment and public policy on drug funding decisions for children.

BACKGROUND: Public policy approaches to funding paediatric medicines in developed public health systems remain understudied. Current approaches to HTA present a variety of conceptual, methodological and practical problems in the context of child health. This study explores the technical and sociopolitical determinants of public funding decisions on paediatric drugs, through the analysis of interviews with stakeholders involved in or impacted by HTA for child health technologies at the provincial and national levels in Canada. METHODS: We undertook in-depth interviews with a purposive sample (n = 22) of stakeholders involved with or affected by drug funding decisions for children at the provincial (Ontario) and national levels in Canada. Grounded theory methods were employed to guide data collection and analysis. Theory on 'technology-as-policy' and the sociopolitics of health technologies served as sensitizing concepts for inductive data coding and analysis. Emergent themes informed the development of conceptual and practical insights on social values and system dynamics related to child HTA, of relevance to public policymaking on the coverage of health technologies for children in Canada. RESULTS: Participant reflection on the normative and systems dimensions of drug funding for children formed two broad categories: HTA paradigms and sociopolitical context. Our analysis revealed notable differences of context and substance related to child health technology production, evaluation and use. These differences spanned the major phases of HTA (from assembly to assessment to integration) and the surrounding sociopolitical milieu (from markets to governance to politics). Careful analysis of these differences sets in relief a number of substantive and procedural shortcomings of current HTA paradigms in respect of child health. Our findings suggest a need to rethink how HTA is structured and operationalized for child health technologies. CONCLUSIONS: Current approaches to health technology assessment are not well calibrated to the realities of child health and illness. Our study presents a nuanced and contextually grounded analysis of concepts instrumental to drug funding decisions for children. The insights generated are directly applicable to the Canadian and Ontario contexts, but also yield fundamental knowledge about HTA for children that are germane to drug policy in other health systems.

Experiences and Expressions of Spirituality at the End of Life in the Intensive Care Unit.

RATIONALE: The austere setting of the intensive care unit (ICU) can suppress expressions of spirituality. OBJECTIVES: To describe how family members and clinicians experience and express spirituality during the dying process in a 21-bed medical-surgical ICU. METHODS: Reflecting the care of 70 dying patients, we conducted 208 semistructured qualitative interviews with 76 family members and 150 clinicians participating in the Three Wishes Project. Interviews were recorded and transcribed verbatim. Data were analyzed by three investigators using qualitative interpretive description. MEASUREMENTS AND MAIN RESULTS: Participants characterize dying as a spiritual event. Spirituality is an integral part of the life narrative of the patient before, during, and after death. Experiences and expressions of spirituality for patients, families, and clinicians during end-of-life care in the ICU are supported by eliciting and implementing wishes in several ways. Eliciting wishes stimulates conversations for people of diverse spiritual orientations to respond to death in personally meaningful ways that facilitate continuity and closure, and ease emotional trauma. Soliciting wishes identifies positive aspirations, which provide comfort in the face of death. The act of soliciting wishes brings clinician humanity to the fore. Wishing makes individual spiritual preferences and practices more accessible. Wishes may be grounded in spiritual goals, such as peace, comfort, connections, and tributes; they may seek a spiritually enhanced environment or represent specific spiritual interventions. CONCLUSIONS: Family members and clinicians consider spirituality an important dimension of end-of-life care. The Three Wishes Project invites and supports the expression of myriad forms of spirituality during the dying process in the ICU.

DEVELOPMENT OF THE ONTARIO DECISION FRAMEWORK: A VALUES BASED FRAMEWORK FOR HEALTH TECHNOLOGY ASSESSMENT.

OBJECTIVES: In 2007, the Ontario Health Technology Advisory Committee (OHTAC) developed a decision framework to guide decision making around nondrug health technologies. In 2012, OHTAC commissioned a revision of this framework to enhance its usability and deepen its conceptual and theoretical foundations. METHODS: The committee overseeing this work used several methods: (a) a priori consensus on guiding principles, (b) a scoping review of decision attributes and processes used globally in health technology assessment (HTA), (c) presentations by methods experts and members of review committees, and (d) committee deliberations over a period of 3 years. RESULTS: The committee adopted a multi-criteria decision-making approach, but rejected the formal use of multi-criteria decision analysis. Three broad categories of attributes were identified: (I) context criteria attributes included factors such as stakeholders, adoption pressures from neighboring jurisdictions, and potential conflicts of interest; (II) primary appraisal criteria attributes included (i) benefits and harms, (ii) economics, and (iii) patient-centered care; (III) feasibility criteria attributes included budget impact and organizational feasibility. CONCLUSION: The revised Ontario Decision Framework is similar in some respects to frameworks used in HTA worldwide. Its distinctive characteristics are that: it is based on an explicit set of social values; HTA paradigms (evidence based medicine, economics, and bioethics/social science) are used to aggregate decision attributes; and that it is rooted in a theoretical framework of optimal decision making, rather than one related to broad social goals, such as health or welfare maximization.

Pregnant women's perceptions of gestational weight gain: A systematic review and meta-synthesis of qualitative research.

Excess gestational weight gain has numerous negative health outcomes for women and children, including high blood pressure, diabetes, and cesarean section (maternal) and high birth weight, trauma at birth, and asphyxia (infants). Excess weight gain in pregnancy is associated with a higher risk of long-term obesity in both mothers and children. Despite a concerted public health effort, the proportion of pregnant women gaining weight in excess of national guidelines continues to increase. To understand this phenomenon and offer suggestions for improving interventions, we conducted a systematic review of qualitative research on pregnant women's perceptions and experiences of weight gain in pregnancy. We used the methodology of qualitative meta-synthesis to analyze 42 empirical qualitative research studies conducted in high-income countries and published between 2005 and 2015. With this synthesis, we provide an account of the underlying factors and circumstances (barriers, facilitators, and motivators) that pregnant women identify as important for appropriate weight gain. We also offer a description of the strategies identified by pregnant women as acceptable and appropriate ways to promote healthy weight gain. Through our integrative analysis, we identify women's common perception on the struggle to enact health behaviors and physical, social, and environmental factors outside of their control. Effective and sensitive interventions to encourage healthy weight gain in pregnancy must consider the social environment in which decisions about weight take place.

PUBLIC AND PATIENT INVOLVEMENT IN HEALTH TECHNOLOGY ASSESSMENT: A FRAMEWORK FOR ACTION.

OBJECTIVE: As health technology assessment (HTA) organizations in Canada and around the world seek to involve the public and patients in their activities, frameworks to guide decisions about whom to involve, through which mechanisms, and at what stages of the HTA process have been lacking. The aim of this study was to describe the development and outputs of a comprehensive framework for involving the public and patients in a government agency's HTA process. METHODS: The framework was informed by a synthesis of international practice and published literature, a dialogue with local, national and international stakeholders, and the deliberations of a government agency's public engagement subcommittee in Ontario, Canada. RESULTS: The practice and literature synthesis failed to identify a single, optimal approach to involving the public and patients in HTA. Choice of methods should be considered in the context of each HTA stage, goals for incorporating societal and/or patient perspectives into the process, and relevant societal and/or patient values at stake. The resulting framework is structured around four actionable elements: (i) guiding principles and goals for public and patient involvement (PPI) in HTA, (ii) the establishment of a common language to support PPI efforts, (iii) a flexible array of PPI approaches, and (iv) on-going evaluation of PPI to inform adjustments over time. CONCLUSIONS: A public and patient involvement framework has been developed for implementation in a government agency's HTA process. Core elements of this framework may apply to other organizations responsible for HTA and health system quality improvement.

Finding Qualitative Research Evidence for Health Technology Assessment.

Health technology assessment (HTA) agencies increasingly use reviews of qualitative research as evidence for evaluating social, experiential, and ethical aspects of health technologies. We systematically searched three bibliographic databases (MEDLINE, CINAHL, and Social Science Citation Index [SSCI]) using published search filters or "hedges" and our hybrid filter to identify qualitative research studies pertaining to chronic obstructive pulmonary disease and early breast cancer. The search filters were compared in terms of sensitivity, specificity, and precision. Our screening by title and abstract revealed that qualitative research constituted only slightly more than 1% of all published research on each health topic. The performance of the published search filters varied greatly across topics and databases. Compared with existing search filters, our hybrid filter demonstrated a consistently high sensitivity across databases and topics, and minimized the resource-intensive process of sifting through false positives. We identify opportunities for qualitative health researchers to improve the uptake of qualitative research into evidence-informed policy making.

Citizen expectations of 'academic entrepreneurship' in health research: public science, practical benefit.

BACKGROUND: Responsiveness to citizens as users of technological innovation helps motivate translational research and commercial engagement among academics. Yet, retaining citizen trust and support for research encourages caution in pursuit of commercial science. OBJECTIVES: We explore citizen expectations of the specifically academic nature of commercial science [i.e. academic entrepreneurship (AE)] and the influence of conflict of interest concerns, hopes about practical benefits and general beliefs. DESIGN, SETTING AND PARTICIPANTS: We conducted a cross-sectional national opinion survey of 1002 Canadians online in 2010. RESULTS: Approval of AE was moderate (mean 3.2/5, SD 0.84), but varied by entrepreneurial activity. Concern about conflict of interests (COI) was moderate (mean 2.9/5, SD 0.86) and varied by type of concern. An ordinary least-squares regression showed that expectations of practical benefits informed support for AE, specifically that academic-industry collaboration can better address real-world problems; conflict of interest concerns were insignificant. CONCLUSIONS: These findings suggest that citizens support AE for its potential to produce practical benefits, but enthusiasm varies and is reduced for activities that may prioritize private over public interests. Further, support exists despite concern about COI, perhaps due to trust in the academic research context. For user engagement in research priority setting, these findings suggest the need to attend to the commercial nature of translational science. For research policy, they suggest the need for governance arrangements for responsible innovation, which can sustain public trust in academic research, and realize the practical benefits that inform public support for AE.

Type 2 diabetes patients' and providers' differing perspectives on medication nonadherence: a qualitative meta-synthesis.

BACKGROUND: Poor adherence to medication regimens increases adverse outcomes for patients with Type 2 diabetes. Improving medication adherence is a growing priority for clinicians and health care systems. We examine the differences between patient and provider understandings of barriers to medication adherence for Type 2 diabetes patients. METHODS: We searched systematically for empirical qualitative studies on the topic of barriers to medication adherence among Type 2 diabetes patients published between 2002-2013; 86 empirical qualitative studies qualified for inclusion. Following qualitative meta-synthesis methods, we coded and analyzed thematically the findings from studies, integrating and comparing findings across studies to yield a synthetic interpretation and new insights from this body of research. RESULTS: We identify 7 categories of barriers: (1) emotional experiences as positive and negative motivators to adherence, (2) intentional non-compliance, (3) patient-provider relationship and communication, (4) information and knowledge, (5) medication administration, (6) social and cultural beliefs, and (7) financial issues. Patients and providers express different understandings of what patients require to improve adherence. Health beliefs, life context and lay understandings all inform patients' accounts. They describe barriers in terms of difficulties adapting medication regimens to their lifestyles and daily routines. In contrast, providers' understandings of patients poor medication adherence behaviors focus on patients' presumed needs for more information about the physiological and biomedical aspect of diabetes. CONCLUSIONS: This study highlights key discrepancies between patients' and providers' understandings of barriers to medication adherence. These misunderstandings span the many cultural and care contexts represented by 86 qualitative studies. Counseling and interventions aimed at improving medication adherence among Type 2 diabetes might become more effective through better integration of the patient's perspective and values concerning adherence difficulties and solutions.

Women's Experiences of Publicly Funded Non-Invasive Prenatal Testing in Ontario, Canada: Considerations for Health Technology Policy-Making.

Non-invasive prenatal testing (NIPT) via fetal DNA in maternal blood has been publicly funded in Ontario, Canada, for high-risk women since 2014. We solicited women's experiences and values related to this new health technology to describe how this test is currently being used in Ontario and to provide information about patient priorities to inform future policy decisions about the use of NIPT. Guided by constructivist grounded theory methodology, we interviewed 38 women who had diverse personal experiences with NIPT. Participants' accounts of their values for decision making about NIPT heavily relied on three mutually modulating factors: timing, accuracy, and risk. The values expressed by women conflict with the way that publicly funded NIPT has typically been implemented in Ontario. We offer recommendations for how NIPT might be integrated into prenatal care pathways in a way more consistent with women's values.

Fair reckoning: a qualitative investigation of responses to an economic health resource allocation survey.

OBJECTIVE: To investigate how participants in an economic resource allocation survey construct notions of fairness. DESIGN: Qualitative interview study guided by interpretive grounded theory methods. SETTING AND PARTICIPANTS: Qualitative interviews were conducted with volunteer university- (n=39) and community-based (n =7) economic survey participants. INTERVENTION OR MAIN VARIABLES STUDIED: We explored how participants constructed meanings to guide or explain fair survey choices, focusing on rationales, imagery and additional desired information not provided in the survey scenarios. MAIN OUTCOME MEASURES: Data were transcribed and coded into qualitative categories. Analysis iterated with data collection iterated through three waves of interviews. RESULTS: Participants compared the survey dilemmas to domains outside the health system. Most compared them with other micro-level, inter-personal sharing tasks. Participants raised several fairness-relevant factors beyond need or capacity to benefit. These included age, weight, poverty, access to other options and personal responsibility for illness; illness duration, curability or seriousness; life expectancy; possibilities for sharing; awareness of other's needs; and ability to explain allocations to those affected. They also articulated a fairness principle little considered by equity theories: that everybody must get something and nobody should get nothing. DISCUSSION AND CONCLUSIONS: Lay criteria for judging fairness are myriad. Simple scenarios may be used to investigate lay commitments to abstract principles. Although principles are the focus of analysis and inference, participants may solve simplified dilemmas by imputing extraneous features to the problem or applying unanticipated principles. These possibilities should be taken into account in the design of resource allocation surveys eliciting the views of the public.

Ethical and Social Values for Paediatric Health Technology Assessment and Drug Policy.

BACKGROUND: Public policy approaches to funding paediatric medicines in advanced health systems remain understudied. In particular, the ethical and social values dimensions of health technology assessment (HTA) and drug coverage decisions for children have received almost no attention in research or policy. METHODS: To elicit and understand the social values that influence decision-making for public funding of paediatric drugs, we undertook a series of in-depth, semi-structured interviews with a stratified purposive sample (n = 22) of stakeholders involved with or affected by drug funding decisions for children at the provincial (Ontario) and national levels in Canada. Constructivist grounded theory methodology guided data collection and thematic analysis. RESULTS: Our study provides empirical evidence about the unique ethical and social values dimensions of HTA for children, and describes a novel social values typology for paediatric drug policy decision-making. Three principal categories of values emerged from stakeholder reflections on HTA and drug policy-making for children: procedural values, structural values, and sociocultural values. Key findings include the importance of attention to the procedural legitimacy of HTA for children, with emphasis on the inclusion of child health voices in processes of technology appraisal and policy uptake; a role for HTA institutions to consider the equity impacts of technologies, both in setting review priorities and in assessing the value of technologies for public coverage; and the potential benefits of a distinct national framework to guide drug policy for children. CONCLUSION: Current approaches to HTA are not well designed for the realities of child health and illness, nor the societal priorities regarding children that our study identified. This research generates new knowledge to inform decision-making on paediatric drugs by HTA institutions and government payers in Canada and other publicly-funded health systems, through insights into the relevant social values for child drug funding decisions from varied stakeholder groups.

Moving cautiously: Public involvement and the health technology assessment community.

OBJECTIVES: This study explores the factors that enhance or reduce the prospects for public involvement in the activities of health technology assessment (HTA) agencies. METHODS: The analytical framework for this study is based on the work of John W. Kingdon, which provides a comprehensive synthesis of the factors influencing governments and public organizations' agenda. The study draws insights from forty-two semistructured telephone interviews with informants involved in international HTA networks and/or in HTA agencies in Canada, Denmark, and the United Kingdom. RESULTS: This exploratory study suggests that the HTA community is moving toward greater public involvement. However, the HTA community remains cautious and ambivalent about the technical feasibility of public involvement, its acceptability to policy makers and practitioners, and its impacts on HTA agencies' resources and procedures. CONCLUSIONS: The study stresses the importance of conducting rigorous and compelling evaluations to inform HTA agencies' decision to adopt, or reject, public involvement practices.

The Moral Foundations of Child Health and Social Policies: A Critical Interpretive Synthesis.

BACKGROUND: Allusions to the uniqueness and value of childhood abound in academic, lay, and policy discourse. However, little clarity exists on the values that guide child health and social policy-making. We review extant academic literature on the normative dimensions of child health and social policy to provide foundations for the development of child-focused public policies. METHODS: We conducted a critical interpretive synthesis of academic literature on the normative dimensions of child health and social policy-making. We employed a social constructivist lens to interpret emergent themes. Political theory on the social construction of target populations served as a bridge between sociologies of childhood and public policy analysis. RESULTS: Our database searches returned 14,658 unique articles; full text review yielded 72 relevant articles. Purposive sampling of relevant literature complemented our electronic searches, adding 51 original articles, for a total of 123 articles. Our analysis of the literature reveals three central themes: potential, rights, and risk. These themes retain relevance in diverse policy domains. A core set of foundational concepts also cuts across disciplines: well-being, participation, and best interests of the child inform debate on the moral and legal dimensions of a gamut of child social policies. Finally, a meta-theme of embedding encompasses the pervasive issue of a child's place, in the family and in society, which is at the heart of much social theory and applied analysis on children and childhood. CONCLUSIONS: Foundational understanding of the moral language and dominant policy frames applied to children can enrich analyses of social policies for children. Most societies paint children as potent, vulnerable, entitled, and embedded. It is the admixture of these elements in particular policy spheres, across distinct places and times, that often determines the form of a given policy and societal reactions to it. Subsequent work in this area will need to detail the degree and impact of variance in the values mix attached to children across sociocultural contexts and investigate tensions between what are and what ought to be the values that guide social policy development for children.

Life support decision making in critical care: Identifying and appraising the qualitative research evidence.

OBJECTIVE: The objective of this study is to identify and appraise qualitative research evidence on the experience of making life-support decisions in critical care. DATA SOURCES: In six databases and supplementary sources, we sought original research published from January 1990 through June 2008 reporting qualitative empirical studies of the experience of life-support decision making in critical care settings. STUDY SELECTION: Fifty-three journal articles and monographs were included. Of these, 25 reported prospective studies and 28 reported retrospective studies. DATA EXTRACTION: We abstracted methodologic characteristics relevant to the basic critical appraisal of qualitative research (prospective data collection, ethics approval, purposive sampling, iterative data collection and analysis, and any method to corroborate findings). DATA SYNTHESIS: Qualitative research traditions represented include grounded theory (n = 15, 28%), ethnography or naturalistic methods (n = 15, 28%), phenomenology (n = 9, 17%), and other or unspecified approaches (n = 14, 26%). All 53 documents describe the research setting; 97% indicate purposive sampling of participants. Studies vary in their capture of multidisciplinary clinician and family perspectives. Thirty-one (58%) report research ethics board review. Only 49% report iterative data collection and analysis, and eight documents (15%) describe an analytically driven stopping point for data collection. Thirty-two documents (60%) indicated a method for corroborating findings. CONCLUSIONS: Qualitative evidence often appears outside of clinical journals, with most research from the United States. Prospective, observation-based studies follow life-support decision making directly. These involve a variety of participants and yield important insights into interactions, communication, and dynamics. Retrospective, interview-based studies lack this direct engagement, but focus on the recollections of fewer types of participants (particularly patients and physicians), and typically address specific issues (communication and stress). Both designs can provide useful reflections for improving care. Given the diversity of qualitative research in critical care, room for improvement exists regarding both the quality and transparency of reported methodology.

"Living with dying": the evolution of family members' experience of mechanical ventilation.

BACKGROUND: Communication with families about mechanical ventilation may be more effective once we gain a better understanding of what families experience and understand about this life support technology when their loved ones are admitted to the intensive care unit (ICU). METHODS: We conducted in-depth interviews with family members of 27 critically ill patients who required mechanical ventilation for > or = 7 days and had an estimated ICU mortality of > or = 50%. Team members reviewed transcripts independently and used grounded theory analysis. RESULTS: The central theme of family members' experience with mechanical ventilation was "living with dying." Initial reactions to the ventilator were of shock and surprise. Family members perceived no option except mechanical ventilation. Although the ventilator kept the patient alive, it also symbolized proximity to death. In time, families became accustomed to images of the ICU as ventilation became more familiar and routine. Their shock and horror were replaced by hope that the ventilator would allow the body to rest, heal, and recover. However, ongoing exposure to their loved one's critical illness and the new role as family spokesperson were traumatizing. CONCLUSIONS: Family members' experiences and their understanding of mechanical ventilation change over time, influenced by their habituation to the ICU environment and its routines. They face uncertainty about death, but maintain hope. Understanding these experiences may engender more respectful, meaningful communication about life support with families.

What does it mean to trust a health system? A qualitative study of Canadian health care values.

OBJECTIVES: We used a qualitative empirical study of Canadians' values toward their health system to develop more meaningful conceptualizations of trust and health systems that can inform the pursuit of more trustworthy health systems. METHODS: We convened nine focus groups in three Canadian cities in 2002 and 2004 in conjunction with a national public opinion telephone survey of Canadians' attitudes and values toward their health system. Health system trust emerged as a significant theme in focus group discussions and was investigated using a modified grounded theory approach. FINDINGS: Respondents construct cleavages and alliances to position themselves in relation to different features of the trusted health system. The health system and Canadian Medicare are identified sources of trust just as are individual health care providers. Core to the trust relationship is the experience of vulnerability which provides the impetus for placing trust (in providers, governments and health systems) or seeds distrust, mistrust and resilience in the same. CONCLUSIONS: We offer a more robust conceptualization of what it means to trust a health system. Policy maker efforts to intervene to restore lost trust could usefully be informed by these findings.

Ethics frameworks in Canadian health policies: foundation, scaffolding, or window dressing?

Health policy documents increasingly feature ethics frameworks that outline key guiding principles. It is unclear whether such frameworks function as scaffolding for creating policy, foundations for responding to policy, or mere aesthetic frames to make policies appear ethical. This study investigates the nature and quality of ethics frameworks in Canadian health documents. We reviewed the ethics frameworks of 24 strategic health policy documents published from 1998 to 2005 by Canadian government agencies. We found that frameworks typically appear as a list of principles or values. These elements vary widely across the terminal, procedural, and substantive values of conventional ethics, and many are better characterized as goals than as ethics. No two ethics frameworks matched, despite common topic areas and presumably broadly shared values within the Canadian health system. Elements shared by at least half of the documents include: access, accountability, autonomy, client-centredness, collaboration, efficiency, equity, and evidence. However, common elements are interpreted quite differently. The genesis of the framework and its elements is seldom described. Only one third of the documents relate specific ethical elements to specific policies. In conclusion, we draw on the clinical guidelines literature to propose some features of a robust, coherent and meaningful ethics framework.

Ethics in Canadian health technology assessment: a descriptive review.

BACKGROUND: Despite the mandate to examine the medical, ethical, and economic implications of the development and use of health technology, health technology assessment (HTA) reports often emphasize the epidemiologic and economic aspects, and omit ethical considerations. This study examines both whether and how ethical issues are incorporated into HTA. OBJECTIVES: We aim to (i) review a set of Canadian HTA reports for ethics content, (ii) describe the strategies used to incorporate ethically relevant information into HTA, and (iii) determine the presence of implicit ethical issues in a sample of HTA reports. METHODS: Descriptive and qualitative content analysis of 608 HTA reports produced by six Canadian HTA agencies from January 1997 to December 2006. RESULTS: We found that (i) a minority (17 percent) of Canadian HTA reports addressed ethical issues, (ii) secondary research predominates while primary analysis is rare, (iii) implicit ethical issues are present in HTA reports that do not purport to address ethics. CONCLUSIONS: Canadian HTA reports rarely explicitly, and then only superficially, address ethics, though implicit ethical issues abound.

Health technology assessment: a comprehensive framework for evidence-based recommendations in Ontario.

OBJECTIVES: This study describes the development of a framework for health technology decisions, for Ontario Health Technology Advisory Committee (OHTAC) in Ontario, Canada. METHODS: OHTAC convened a "Decision Determinants Sub-Committee" in January 2007, which undertook a systematic literature review and conducted key informant interviews to develop an explicit decision-making framework. RESULTS: The "Decision Determinants Sub-Committee" offered recommendations about decision criteria, and the process by which decisions are made. Decision criteria include (i) overall clinical benefit, (ii) consistency with societal and ethical values, (iii) value for money, and (iv) feasibility of adoption into the health system. The decision process should be transparent and fair and should use a deliberative process in delivering recommendations. CONCLUSIONS: This methodology is currently being pilot tested in a live environment: OHTAC. It will be evaluated and revised according to its feasibility, acceptability, and perceived usefulness.

Contending visions in the evolution of genetic medicine: the case of cancer genetic services in Ontario, Canada.

Growth in genetic medicine has provoked debate about how new and emerging genetic services should be provided, and specifically, what roles non-genetic clinicians should assume. We address this question through a qualitative interview based case study of the program in genetic testing for the hereditary cancer syndromes (breast/ovarian and colorectal) in Ontario, Canada. We argue that two communities offer parallel visions of cancer genetic care: one "genetic," the other "oncologic." Both communities argue from precedent that cancer genetics is a natural extension of their work: it is "what we do." Both communities also highlight the importance of their own expertise in providing core elements of cancer genetic care: it requires "what we know." Further, both communities perceive the need for leadership by their own (or a related) community as genetic medicine expands to include a broader array of more common and complex diseases: it is expanding "where we're leading." Yet, the "we's" articulating these visions are not reducible to professional identity; rather, both represent distinctive "communities of practice and discourse" that are constructed in relation to institutionalized professional roles, and interactions with the genetic technologies (both tests and counselling) themselves. Available literature on the role of diverse health care professionals in the provision of genetic health care presumes a fixed identity and set of approaches for each professional group that might play a role. Further, existing models tend to assume that genetic technologies are given as tools, and that service organization concerns primarily questions of who will have access to these tools and their powers, as well as the consequent professional and ethical responsibilities. Yet questions about who will control genetic technologies are not simply turf battles between the professions: they are also inescapably questions about what the genetic technologies should and will accomplish clinically.