A Qualitative Study on Experiences and Perspectives of Members of a Dutch Medical Research Ethics Committee.

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee (MREC) regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members.

Evaluation and perceived results of moral case deliberation: A mixed methods study.

BACKGROUND: Moral case deliberation is increasingly becoming part of various Dutch healthcare organizations. Although some evaluation studies of moral case deliberation have been carried out, research into the results of moral case deliberation within aged care is scarce. RESEARCH QUESTIONS: How did participants evaluate moral case deliberation? What has moral case deliberation brought to them? What has moral case deliberation contributed to care practice? Should moral case deliberation be further implemented and, if so, how? RESEARCH DESIGN: Quantitative analysis of a questionnaire study among participants of moral case deliberation, both caregivers and team leaders. Qualitative analysis of written answers to open questions, interview study and focus group meetings among caregivers and team leaders. PARTICIPANTS AND RESEARCH CONTEXT: Caregivers and team leaders in a large organization for aged care in the Netherlands. A total of 61 moral case deliberation sessions, carried out on 16 care locations belonging to the organization, were evaluated and perceived results were assessed. ETHICAL CONSIDERATIONS: Participants gave informed consent and anonymity was guaranteed. In the Netherlands, the law does not prescribe independent ethical review by an Institutional Review Board for this kind of research among healthcare professionals. FINDINGS: Moral case deliberation was evaluated positively by the participants. Content and atmosphere of moral case deliberation received high scores, while organizational issues regarding the moral case deliberation sessions scored lower and merit further attention. Respondents indicated that moral case deliberation has the potential to contribute to care practice as relationships among team members improve, more openness is experienced and more understanding for different perspectives is fostered. If moral case deliberation is to be successfully implemented, top-down approaches should go hand in hand with bottom-up approaches. CONCLUSION: The relevance of moral case deliberation for care practice received wide acknowledgement from the respondents. It can contribute to the team's cohesion as mutual understanding for one another's views is fostered. If implemented well, moral case deliberation has the potential to improve care, according to the respondents.

Ethical considerations of worksite health promotion: an exploration of stakeholders' views.

BACKGROUND: Developing, implementing and evaluating worksite health promotion requires dealing with all stakeholders involved, such as employers, employees, occupational physicians, insurance companies, providers, labour unions and research and knowledge institutes. Although worksite health promotion is becoming more common, empirical research on ethical considerations of worksite health promotion is scarce. METHODS: We explored the views of stakeholders involved in worksite health promotion in focus group discussions and we described the ethical considerations that result from differences between these views. The focus group discussions were organised per stakeholder group. Data were analysed according to the constant comparison method. RESULTS: Our analyses show that although the definition of occupational health is the same for all stakeholders, namely 'being able to perform your job', there seem to be important differences in the views on what constitutes a risk factor to occupational health. According to the employees, risk factors to occupational health are prevailingly job-related. Labour unions agree with them, but other stakeholders, including the employer, particularly see employee-related issues such as lifestyle behaviour as risk factors to occupational health. The difference in definition of occupational health risk factors translates into the same categorisation of worksite health promotion; employee-related activities and work-related activities. The difference in conceptualisation of occupational health risk factors and worksite health promotion resonates in the way stakeholders understand 'responsibility' for lifestyle behaviour. Even though all stakeholders agree on whose responsibility lifestyle behaviour is, namely that of the employee, the meaning of 'responsibility' differs between employees, and employers. For employees, responsibility means autonomy, while for employers and other stakeholders, responsibility equals duty. This difference may in turn contribute to ambivalent relationships between stakeholders. CONCLUSION: All stakeholders, including employees, should be given a voice in developing, implementing and evaluating worksite health promotion. Moreover, since stakeholders agree on lifestyle being the responsibility of the employee, but disagree on what this responsibility means (duty versus autonomy), it is of utmost importance to examine the discourse of stakeholders. This way, ambivalence in relationships between stakeholders could be prevented.

Informing family members about a hereditary predisposition to cancer: attitudes and practices among clinical geneticists.

If a hereditary predisposition to colorectal cancer or breast cancer is diagnosed, most guidelines state that clinical geneticists should request index patients to inform their at-risk relatives about the existence of this condition in their family, thus enabling them to consider presymptomatic genetic testing. Those identified as mutation carriers can undertake strategies to reduce their risk of developing the disease or to facilitate early diagnosis. This procedure of informing relatives through the index patient has been criticised, as it results in relatively few requests for genetic testing, conceivably because a certain number of relatives remain uninformed. This pilot study explored attitudes toward informing family members and relevant practices among clinical geneticists. In general, clinical geneticists consider it to be in the interests of family members to be informed and acknowledge that this goal is not accomplished by current procedures. The reasons given for maintaining present practices despite this include clinical 'mores', uncertainty about the legal right of doctors to inform family members themselves, and, importantly, a lack of resources. We discuss these reasons from an ethical point of view and conclude that they are partly uninformed and inconsistent. If informing relatives is considered to be in their best interests, clinical geneticists should consider informing relatives themselves. In the common situation in which index patients do not object to informing relatives, no legal obstacles prevent geneticists from doing so. An evaluation of these findings among professionals may lead to a more active approach in clinical practice.