Investigating Quality of Life from the Perspectives of Older Adults in Local Communities.

Governments are increasingly interested in measuring quality of life (QoL) among older adults to inform policy. We demonstrate the advantages of situating an investigation of QoL in local contexts through a thematic analysis of focus group data collected in Chatham-Kent, Ontario, Canada. Local and broader factors relating to QoL among older adults were explored. We examine three themes: Natural Environment considers how participants derive aspects of their sense of QoL from the unique natural environment in Chatham-Kent; Amalgamation's Influence on Identity explores how participants' sense of belongingness and place-based identity were shaped by the amalgamation of townships and communities that now constitute Chatham-Kent; and Ease of Travel and Independence examines how older adults' conceptions of QoL are closely connected to their ease of travel, which they connect with a sense of independence. Our findings provide further support for the importance of engaging directly with older adults to understand their perspectives of QoL in a local context, particularly when seeking to inform policy changes.

The Meanings of Helping: An Analysis of Cystic Fibrosis Patients' Reasons for Participating in Biomedical Research.

Research participants often report wanting to help as a reason for participation, but who they want to help and why is rarely explored. We examined meanings associated with helping among 21 adults with cystic fibrosis (CF)-a group with high participation in research. Meanings included helping to advance research, helping others with CF, helping as their job, helping themselves, helping because they are special, and helping to give back. While some meanings were primarily oriented toward helping others, some also involved hoping for benefits for oneself, and some included feelings of responsibility. Despite indicating that they understood that research is not designed to help them directly, participants nevertheless hoped that it might. We discuss implications for research ethics oversight.

Ethically sustainable governance in the biobanking of eggs and embryos for research.

Biobanking of human tissues is associated with a range of ethical, legal, and social (ELS) challenges. These include difficulties in operationalising informed consent protocols, protecting donors' privacy, managing the return of incidental findings, conceptualising ownership of tissues, and benefit sharing. Though largely unresolved, these challenges are well documented and debated in academic literature. One common response to the ELS challenges of biobanks is a call for strong and independent governance of biobanks. Theorists who argue along these lines suggest that since fully informed consent to a single research project is often not feasible, research participants should be given the additional protection of being allowed to consent to the governance framework of the biobank. Such governance therefore needs to be transparent and ethically sustainable. In this paper we review the governance challenges of establishing and maintaining human tissue biobanks. We then discuss how the creation of a biobank for eggs and embryos, in particular, may introduce additional or unique challenges beyond those presented by the biobanking of other human tissues. Following previous work on biobank governance, we argue that ethically sustainable governance needs to be participatory, adaptive, and trustworthy.