There has been little, if any, discussion of the issue as of now b. There has been discussion among researchers, but little discussion among policy makers c. There has been discussion among both researchers and policy makers d. I am not sure -or other answer 1.1 In Australia, genomic research would require ethics approval like any other human research. DTP research would also attract the general requirements for approving human research, including minimizing risk and ensuring consent (Chapter 2.1-2.3 National Statement). In addition, there are specific requirements for Genomic Research in the National Statement in Chapter 3.3. Any proposed DTP genomic research would need to comply with the specific requirements of Chapter 3.3 to be satisfactorily addressed for ethical approval. 1.2 The National Health and Medical Research Council has the issue of Direct to Customer Genetic Testing under consideration and has published three relevant information documents. 1 1.3 The Commonwealth Australia Government, Department of Health has issued guidance for the Provision of Direct-to-Consumer Genetic Tests: Guiding Principles for Providers. 2 The Australian Genomics Health Alliance (AGHA) published a news page on Understanding Direct-to-Consumer Genetic Testing, with information on clinical-grade testing. 3 2. Assume that a researcher in your country wants to conduct DTP genomic research with participants in your country and that such research is subject to IRB/REC review. Please describe the conditions for IRB/ REC approval, if it could be approved at all.

AimDecades of research confirm that children and adolescents in out‐of‐home care (foster family, residential care) have much greater health care needs than their peers. A systematic literature review was conducted to evaluate organisational health care models for this vulnerable group.MethodsA systematic literature search was undertaken of the following databases: Academic Search Elite, CENTRAL, Cochrane Database of Systematic Reviews, Cinahl, DARE, ERIC, HTA, PsycInfo, Psychology and Behavioural Sciences Collection, PubMed, SocIndex. Randomised and non‐randomised controlled trials were to be included. Two pairs of reviewers independently assessed abstracts of the identified published papers. Abstracts meeting the inclusion criteria were ordered in full text. Each article was reviewed independently, by pairs of reviewers. A joint assessment was made based on the inclusion criteria and relevance. Cases of disagreement were resolved by consensus discussion.ResultsNo study with low or medium risk of bias was identified.ConclusionIn the absence of studies of acceptable quality, it is not possible to assess the impact of organisational models intended to ensure adequate health and dental care for children and adolescents in out‐of‐home care. Therefore, well‐designed follow‐up studies should be conducted following the implementation of such models.

The aim of this paper was to describe how people living with a neurological disability such as multiple sclerosis, Parkinson's disease and stroke reason regarding using apps to facilitate self-management in everyday life. Material and methods: A qualitative research approach with a focus group methodology was used. The sample comprised 16 participants, 11 men and 5 women, with an average age of 64 years (ranging from 51-80 years). Six participants were diagnosed with multiple sclerosis, six with Parkinson's disease and four with stroke. Data were analyzed using thematic analysis, which is a method for identifying, analyzing and reporting patterns. Results: The results formed two themes. The first theme "using apps to have control of my health" comprises two subthemes; "monitor and take responsibility for a healthy lifestyle" and "compensate to facilitate everyday life". The second theme "using the app as a tool and means for communication" also comprised two subthemes; "dare to trust the app" and "feeling safe when sharing information with health care professionals". Conclusions: The use of apps put increased responsibility on the person and had the possibility to make them more involved in their own care. The use of an app can facilitate a healthy lifestyle and help to monitor disease-specific symptoms. In order to be able to use apps for communication with the health care sector legislation and safety issues need to be considered. ä IMPLICATIONS FOR REHABILITATION Apps can be used for self-management if they are safe and can be trusted. People with neurological disabilities want to be involved in their healthcare and needs to be addressed by health care professionals. The use of apps grasp over a wide variety of areas this is something that may be considered in health care and something that can be addressed by interdisciplinary approaches. Ordinary health-oriented apps and disease-specific apps were used differently and for different purposes.

Legislation for dementia care needs to be continually rethought, if the rights of older persons and other persons with dementia are to be addressed properly. We propose a theoretical framework for understanding vulnerability and dependency, which enables us to problematize the currently prevailing legal conception of adults as always able — irrespective of health or age — to act autonomously in their everyday lives. Such an approach gives rise to difficult dilemmas when persons with dementia are forced to make decisions on their own about basic living conditions, such as housing and care, without decision-making support. In Sweden, for example, such matters are frequently left to the person him- or herself to decide, often without any assistance from social workers, and with family members serving as caregivers of last resort.Using vulnerability theory as the framework for our discussion, we argue that policymakers should not apply a group-oriented approach (based on factors like age, legal status, or mental capacity) to persons suffering from dementia. The needs of such individuals are as complex and varied as they themselves are. We discuss our findings from an interdisciplinary (law/social work) research project in which we examine the dilemma that social workers face when they are required, under the terms of the Swedish Social Services Act, to determine whether persons with dementia are to be granted support.We argue further that a cross-disciplinary approach — in which vulnerability theory furnishes the framework — opens up for new ways of understanding and developing social welfare law and practice. This, we believe, can help us better address the rights, interests, and needs of people with dementia, of their families, and of professionals in the social welfare system. Finally, many of the problems faced by ageing societies in general can be understood on the basis of such an approach.

Policy-makers, the medical industry and researchers are demonstrating a keen interest in the potential of large registries of patient data, both nationally and internationally. The registries offer promising ways to measure and develop operational quality within health and medical care services. As a result of certain favourable patient data regulations and government funding, the development of quality registries is advanced in Sweden. The combination of increasing demand for more cost-efficient healthcare that can accommodate the demographic development of a rapidly ageing population, and the emergence of eHealth with an increasing digitalisation of patient data, calls attention to quality registries as a possible way for healthcare improvements. However, even if the use of registries has many advantages, there are some drawbacks from a patient privacy point of view. This article aims to analyse this growing interdependence of quality registries for the healthcare sector. It discusses some lessons from the Swedish case, with particular focus on the collection of data from elderly persons with cognitive impairments.