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Spinal muscular atrophy (SMA) is the most common genetic cause of infant mortality. SMA is a spectral disorder and is categorised based on symptom onset and severity. The median life expectancy for infants with SMA presenting before 6 months of age is less than 2 years without respiratory support. To date, there is no cure for SMA. In June 2017, nusinersen was approved in Canada as the first disease-modifying drug for SMA because of its demonstrated benefits on motor function and survival in clinical trials. However, with a price tag of almost 1 million dollars for the first year of therapy, careful clinical, treatment-based and ethical consideration of the principles of (i) best interests; (ii) universality; (iii) portability; (iv) public administration; (v) accessibility; and (vi) comprehensiveness are important guideposts to ensure transparent and equitable allocation of health-care resources for nusinersen and all other future orphan drugs. [ABSTRACT FROM AUTHOR]

The primary objective of this commentary is to integrate current neuroscientific research on brain development during adolescence, with existing consent frameworks that do not designate a minimum age for eligibility to consent to, or refuse medical treatment. To reach this objective, the three consent frameworks used in health care settings are outlined: age-based framework; mature minor framework and capacity-based framework. This commentary draws on the Canadian health care system specifically to consider consent frameworks that grant young people with decision-making capacity. Next, a brief review of adolescent brain development findings is presented, particularly pertaining to the decision-making capacity of young people within medical contexts. Ultimately, the question of whether the stage of a young person's brain development impedes their capacity to consent to, or refuse medical treatment is addressed. This commentary provides reassurance as to the compatibility between capacity-based and mature minor frameworks to consent to treatment with current neuroscientific understanding of adolescent brain development. [ABSTRACT FROM AUTHOR]

The literature fails to reflect general agreement over the nature of the services and procedures provided by bioethicists, and the training and core competencies this work requires. If bioethicists are to define their activities in a consistent way, it makes sense to look for common ground in shared communities of practice. We report results of a survey of the services and procedures among bioethicists affiliated with the University of Toronto Joint Centre for Bioethics (JCB). This is the largest group of bioethicists working in healthcare organizations in Canada. The results suggest there are many common services and procedures of JCB bioethicists. This survey can serve as a baseline for further exploration of the work of JCB bioethicists. Common practices exist with respect to the domains of practice, individual reporting relationships, service availability within business hours and the education and training of the bioethicist. [ABSTRACT FROM AUTHOR]

The article offers information on physicians' legal rights and duties specific to separate provinces in Canada. It mentions that physicians have a legal duty to provide basic medical skill and care to their existing patients during pandemic. It informs that physicians can refuse to work in unsafe conditions which can cause serious injury and death. It reports that Canadian provinces have legislation that plans the government's powers to authorize physicians to work during a state of emergency.

Background: Priority setting in health care is a challenge because demand for services exceeds available resources. The increasing demand for less invasive surgical procedures by patients, health care institutions and industry, places added pressure on surgeons to acquire the appropriate skills to adopt innovative procedures. Such innovations are often initiated and introduced by surgeons in the hospital setting. Decision-making processes for the adoption of surgical innovations in hospitals have not been well studied and a standard process for their introduction does not exist. The purpose of this study is to describe and evaluate the decision-making process for the adoption of a new technology for repair of abdominal aortic aneurysms (endovascular aneurysm repair [EVAR]) in an academic health sciences centre to better understand how decisions are made for the introduction of surgical innovations at the hospital level. Methods: A qualitative case study of the decision to adopt EVAR was conducted using a modified thematic analysis of documents and semi-structured interviews. Accountability for Reasonableness was used as a conceptual framework for fairness in priority setting processes in health care organizations. Results: There were two key decisions regarding EVAR: the decision to adopt the new technology in the hospital and the decision to stop hospital funding. The decision to adopt EVAR was based on perceived improved patient outcomes, safety, and the surgeons' desire to innovate. This decision involved very few stakeholders. The decision to stop funding of EVAR involved all key players and was based on criteria apparent to all those involved, including cost, evidence and hospital priorities. Limited internal communications were made prior to adopting the technology. There was no formal means to appeal the decisions made. Conclusion: The analysis yielded recommendations for improving future decisions about the adoption of surgical innovations. ese empirical findings will be used with other case studies to help develop guidelines to help decision-makers adopt surgical innovations in Canadian hospitals. [ABSTRACT FROM AUTHOR]

The article focuses on the migration trends experiences by several developed countries which include Australia, Canada, and the Federal Republic of Germany. It says that eight developed countries were found to have published data needed to assess changes in the regional composition of migration inflows, in which the data were based on permanent residents admissions, country of birth, and the number of incoming and outgoing migrants. It states that published datas which uses classification by country of origin are not ideal for the identification of developed and developing countries. It adds that a rise of refugee and asylum-seeker migration directed to most developed countries have witnessed in 1980.

When considering expensive drug treatment for neonates and infants, how should we decide what we can and cannot afford? Accountably allocating health-care resources can be achieved using a framework that reflects the values a society considers so reflective of the collective will that they have been formally entrenched in law. The values and procedural mechanisms entrenched in the Canadian Charter of Rights and Freedoms are particularly helpful for those faced with these difficult spending decisions. [ABSTRACT FROM AUTHOR]

Whole genome sequencing (WGS) is a transformative technology which promises improved diagnostic rates compared to conventional genetic testing strategies and tailored approaches to patient care. Due to the practical and ethical complexities associated with using WGS, particularly in the paediatric context, input from a broad spectrum of healthcare providers can guide implementation strategies. We recruited healthcare providers from the largest paediatric academic health science centre in Canada and conducted semi-structured qualitative interviews, exploring experiences with and perceptions of the opportunities and challenges associated with WGS. Interview transcripts were coded and analyzed thematically. Interviews were completed with 14 genetics professionals (geneticists and genetic counsellors) and 15 non-genetics professionals (physician sub-specialists and nurses). Genetics professionals ordered genetic tests more often and reported greater confidence on pre- and post-test genetic counselling compared to non-genetics professionals. Most healthcare providers endorsed WGS when a more specific test was either not available or not likely to yield a diagnosis. While genetics professionals raised concerns regarding the time demands associated with reviewing WGS variants, non-genetics professionals reflected concerns about knowledge and training. Providers' position on reporting secondary variants to parents drew upon but was not limited to the concept of best interests. Taken together, understanding practical and principled matters of WGS from healthcare providers' perspectives can guide ongoing efforts to implement WGS in paediatrics. [ABSTRACT FROM AUTHOR]