Knowledge, health beliefs and attitudes towards dementia and dementia risk reduction among descendants of people with dementia: a qualitative study using focus group discussions.

BACKGROUND: Individuals with a parental family history of dementia have an increased risk of developing dementia because they share their genes as well as their psychosocial behaviour. Due to this increased risk and their experience with dementia, they may be particularly eager to receive information regarding dementia risk reduction (DRR). This study evaluated the knowledge, beliefs and attitudes towards dementia and DRR among descendants of people with dementia. METHOD: Using a semi-structured topic guide, three focus group discussions were conducted consisting of 12 female (80%) and 3 male (20%) descendants of people with dementia with a mean (± SD) age of 48.8 (± 12) years. Focus group discussions were audio recorded and transcribed. Each transcript was analysed thoroughly, and where appropriate, a code was generated and assigned by two researchers independently. Then, similar codes were grouped together and categorized into themes. RESULTS: The items in the topic guide could only be addressed after participants had been given the opportunity to share their experiences of having a parent with dementia. Participants were unaware or uncertain about the possibility of reducing the risk of developing dementia and therefore hesitant to assess their dementia risk without treatment options in sight. Moreover, participants indicated that their general practitioner only gave some information on heritability, not on DRR. Although participants identified a large number of modifiable risk factors as a group during the group discussions, they were eager to receive more information on dementia and DRR. In the end, participants adopted a more positive attitude towards a DRR programme and provided suggestions for the development of future DRR programmes. CONCLUSIONS: Although the research aim was to evaluate the knowledge, beliefs and attitudes towards dementia and DRR, sharing experiences of having a parent with dementia seemed a prerequisite for considering participants' own risk of developing dementia and participating in a DRR programme. Knowledge of dementia and DRR was limited. Due to unawareness of the possibility of reducing dementia risk, participants were hesitant about assessing their dementia risk. Group discussions positively changed the perception of dementia risk assessment and participants' willingness to participate in a DRR programme.

Motives of contributing personal data for health research: (non-)participation in a Dutch biobank.

BACKGROUND: Large-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to end their participation. This comparison could yield new insights into motives of participation and non-participation, in particular the behavioural change of withdrawal. METHODS: We conducted 36 in-depth interviews with ex-participants, participants, and non-participants of a three-generation, population-based biobank in the Netherlands. The interviews focused on the respondents' decision-making processes relating to their participation in a large-scale, centralized repository for health research data. RESULTS: The decision of participants and non-participants to contribute to the biobank was motivated by a desire to help others. Whereas participants perceived only benefits relating to their participation and were unconcerned about potential risks, non-participants and ex-participants raised concerns about the threat of large-scale, centralized public data repositories and public institutes, such as social exclusion or commercialization. Our analysis of ex-participants' perceptions suggests that intrapersonal characteristics, such as levels of trust in society, participation conceived as a social norm, and basic societal values account for differences between participants and non-participants. CONCLUSIONS: Our findings indicate the fluidity of motives centring on helping others in decisions to participate in large-scale, centralized health research data repositories. Efforts to improve participation should focus on enhancing the trustworthiness of such data repositories and developing layered strategies for communication with participants and with the public. Accordingly, personalized approaches for recruiting participants and transmitting information along with appropriate regulatory frameworks are required, which have important implications for current data management and informed consent procedures.

[Trisomy 18: how lethal is 'lethal'?] / Trisomie 18: hoe lethaal is 'lethaal'?

Should active treatment be available for children with trisomy 18? In the Netherlands, trisomy 18 is described as a lethal condition leading to death during or immediately after birth. The Dutch course of action for trisomy 18 is termination of pregnancy, almost without exception, or passive treatment without medical interventions. But that approach might be outdated. We present a case that inspired physicians and parents to rethink the perception of trisomy 18.

Confounders in voluntary consent about living parental liver donation: no choice and emotions.

Parents' perception of having no choice and strong emotions like fear about the prospect of living liver donation can lead professionals to question the voluntariness of their decision. We discuss the relation of these experiences (no choice and emotions), as they are communicated by parents in our study, to the requirement of voluntariness. The perceived lack of choice, and emotions are two themes we found in the interviews conducted within the "Living Related Donation; a Qualitative-Ethical Study" research program. As a framework for the interpretation of these themes we discuss views of moral agency. We adopt a view in which relations are seen as constitutive of moral agency. Judging from this view, the perceived lack of choice can best be understood as a sign of commitment. We argue in this article that neither seeing no choice, nor emotions in themselves should be seen as compromises of a voluntary consent. However both experiences draw attention to aspects that are important to come to an evaluation of consent to donation. We discuss the story of one mother as an exemplary case to show how both themes can intertwine.

(Mis)understanding Singer: replaceability of children or intellectual endeavour?

Should doctors have the possibility to save children from incurable suffering and end their lives?. At first glance, the standpoints in the debate around this question seem translucent and well known and the debate intelligible. I contend that this is not the case and I will illustrate this in analysing the debate between Peter Singer and Ulrich Bleidick. Whomever wants to answer the question whether it is acceptable to end the lives of suffering small children will have to do some careful reading and thinking about the different and differing moral arguments in the debate. This demands emotional restraint and intellectual honesty. Trying to understand Singer and his opponents is a challenging way of charting what exactly is at stake in this debate.