Genomic information and a person's right not to know: A closer look at variations in hypothetical informational preferences in a German sample

In clinical practice and in research, there is an ongoing debate on how to return incidental and secondary findings of genetic tests to patients and research participants. Previous investigations have found that most of the people most of the time are in favor of full disclosure of results. Yet, the option to reject disclosure, based on the so-called right not to know, can be valuable especially for some vulnerable subgroups of recipients. In the present study we investigated variations in informational preferences in the context of genetic testing in a large and diverse German sample. This survey examined health care professionals, patients, participants of genetic counseling sessions and members of the general population (N = 518). Survey participants were assessed regarding their openness to learning about findings under various hypothetical scenarios, as well as their attitudes about the doctor-patient-relationship in a disclosure situation and about informational transfer to third parties. While the majority of participants wanted to learn about their findings, the extent of support of disclosure varied with features of the hypothetical diagnostic scenarios (e.g., controllability of disease;abstract vs. concrete scenario description) and demographic characteristics of the subjects. For example, subjects with higher levels of education were more selective with regards to the kind of information they want to receive than those with lower levels of education. We discuss implications of these findings for the debate about the right not to know and for the clinical practice of informed consent procedures

Age-Specific Housing for Low to Moderate-Income Older People [Positioning Paper]

This positioning paper provides the context for a multidisciplinary research project on age-specific housing and care for low to medium-income older people. The research project draws on the collaborative expertise of academic researchers in the social science, health, economics, and architectural fields. The project seeks to answer the following questions: What age-specific accommodation options are available to older people? What sort of care component do they offer to consumers? To what extent can low to moderate-income earners access these options? One of the major policy implications to emerge from recent research into older persons’ accommodation in Australia has been the importance of facilitating a holistic policy approach to aged housing, providing coordinated housing assistance and care (Faulkner & Bennett, 2002; Bridge et al., 2002, Jones et al., 2008a). This research will fill a significant gap in our understanding of the Australian age-specific housing market, particularly the affordability of the current market for low to moderate-income earners, and will be of benefit to those in policy development and governmental decision-making, service providers and community organisations in the ageing sector, private corporations with housing interests, and to older people themselves and their families. It builds on a small but growing body of previous AHURI research in this area, such as the work of Jones et al. (2008) on housing, support and care for older people, Quinn et al. (2009) on dwelling, land and neighbourhood use by older home owners, McNelis et al. (2008) on older people and public housing, and Bridge et al. (2009) on reverse mortgages and older people. The project builds particularly on a recent report by Jones, Howe, Tilse, Bartlett and Stimson, Service integrated housing for Australians in later life (2010), which has begun the work of establishing an in-depth profile of the housing and care options available to older people. This research builds upon the profile developed in this report, but reconfigures it within a new paradigm to focus on the needs of low to moderate-income earners, and the particular supply and demand factors associated with the age-specific housing market for this target group. This will have significant implications for the dwelling types examined in this project, concentrating on affordable housing types accessed by low-income older people, such as subsidised community housing, boarding houses, and mobile home communities, and cutting out an analysis of housing types on the higher end of the market. It will also significantly impact the analysis undertaken around unmet need and evaluations of affordability and suitability for the low-income target population

IgA nephropathy in an Italian child with familial Mediterranean fever

Familial Mediterranean fever is an autosomal recessive disorder characterized by transient attacks of fever and polyserositis with substantial risk of developing amyloidotic nephropathy over time. We report an Italian child with familial Mediterranean fever presenting with hematuria during attacks in whom kidney biopsy documented the presence of mesangial IgA deposits and the absence of amyloidosis. Kidney biopsy should be performed in patients showing microscopic or gross hematuria during attacks of familial Mediterranean fever in order to gain additional epidemiological data about specific features of renal involvement and to allow adequate treatment

Age-specific housing for low to moderate-income older people

This positioning paper provides the context for a multidisciplinary research project on age-specific housing and care for low to medium-income older people. The research project draws on the collaborative expertise of academic researchers in the social science, health, economics, and architectural fields. The project seeks to answer the following questions: What age-specific accommodation options are available to older people? What sort of care component do they offer to consumers? To what extent can low to moderate-income earners access these options

Percent agreement by educational level for selected items.

<p>Percent agreement by educational level for selected items.</p

Descriptive measures of the sample.

<p>Descriptive measures of the sample.</p

The wish to know in different diagnostic scenarios.

<p>The wish to know in different diagnostic scenarios.</p