As in other areas of medical practice, relatives accompany patients to genetic consultations. However, unlike in other areas, the consultations may be relevant to the relatives’ health because they may be at risk of developing the same genetic condition as the patient. The presence of relatives in genetic consultation may affect the decision‐making process and it raises questions about the perception of patient autonomy and the way it is practiced in genetics. However, these issues have not been examined in previous (...) empirical studies. This article aims to fill this gap by reporting findings from a qualitative study with clinicians working in the area of inherited breast cancer. The findings indicate that family presence has an impact on the patient's decisions to undergo genetic testing and preventative operations when she is diagnosed as a carrier. The findings further indicate that, unlike in other areas of medical practice, blood relatives who are present in consultations are perceived by clinicians as patients or potential patients, and this in turn increases their involvement in discussions in the consultation room. Finally, the findings indicate that in genetics, a relational approach to autonomy is applied. Decisions are made in a social context, where the relatives’ views are heard and taken into account. The findings suggest that the conventional bioethical approach to autonomy, which perceives the decision‐making unit as comprising a clinician and an individual patient, is challenged in genetics. The findings thus suggest that bioethicists, lawyers and policy‐makers should consider whether this individualistic approach is still valid and applicable. (shrink)

The posthumous retrieval and use of gametes is socially, ethically, and legally controversial. In the countries that do not prohibit the practice, posthumous assisted reproduction is usually permitted only at the request of the surviving spouse and only when the deceased left written consent. This paper presents the recommendations of an ethics committee established by the Israeli Fertility Association. In its discussions, the committee addressed the ethical considerations of posthumous use of sperm—even in the absence of written consent from the (...) deceased—at the request of either the spouse or the deceased’s parents who wish to become the offspring’s parents or grandparents. It is concluded that under certain conditions, a request by the deceased’s parents to posthumously use the deceased’s sperm is justified and should be granted. (shrink)

Objectives: The objectives of the study were to assess similarities and differences between breast cancer patients and their husbands in terms of doctor-patient/spouse relationships and shared decision making; and to investigate the association between breast cancer patients and husbands in terms of preference of type of doctor, doctor-patient relationship, and shared decision making regarding medical treatment. Method: Fifty-seven women with breast cancer, and their husbands, completed questionnaires measuring doctor-patient/spouse relationships, and decision making regarding medical treatment. Results: Patients believe they have (...) a key role in the medical decision-making process and that the participation of their husbands, and their agreement with the decision, is important. Both breast cancer patients and their husbands prefer a shared decision-making process to paternalistic or autonomy-based approaches. Conclusion: In contrast to legal and bioethical approaches, which focus on the patient as the primary decision maker, this study reflects a practical recognition of the role of the breast cancer patient's husband in the decision-making process. It also reflects a relational rather than an individualistic perception of patient autonomy. (shrink)

Bioethicists, medical professionals and lawyers who support Posthumous Assisted Reproduction as an ethical procedure in the case of the deceased’s spouse often oppose it in the case of the deceased’s parents. In addition, supporters of PAR usually rely on an individualistic version of liberalism, thus focusing on a personal rather than relational approach to autonomy. This article proposes an alternative and comprehensive theoretical framework for the practice of PAR, based on the concepts of solidarity and relational autonomy. By analyzing empirical (...) data on people’s attitudes towards PAR, we reveal an important distinction between the deceased’s wish and the deceased’s consent. In addition, we show that in the majority of cases individuals report that the well-being of their relatives is paramount once they are dead. This finding, as will be demonstrated in the article, is not fully in line with Tremellen and Savulescu’s position who allow PAR in the case of the deceased’s spouse but not in the case of his parents. We also suggest that a relational autonomy perspective can be used to evaluate the choices and actions of the deceased, and to justify the requests for PAR by his spouse or parents. Furthermore, the discussion leads us to analyze both Sandel’s account of solidarity and the more recent account of Prainsack and Buyx. We conclude that PAR can be considered as a solidarity-based practice, both at the familial and societal level, an aspect that should be given more emphasis in the discourse surrounding PAR. (shrink)

Leading research projects are evidence of the growing public interest in genetic diagnosis and treatment. In this context, disclosure of genetic information to relatives has become a prominent issue. However, this involves patient confidentiality, which is grounded in law and conflicts with disclosure to relatives. When conducting a legal and bioethical discussion in this context, it is first necessary to examine how clinicians perceive the role of law in their practice and how they interpret it. A qualitative study was therefore (...) conducted among clinicians in Israel. The findings indicate that the clinicians’ approach is more relational than that of the law, in view of their pro-active steps to ensure that familial information reaches the relatives when the patient is reluctant to convey this information themselves. In light of these findings the authors argue that the law can resolve situations of explicit and implicit refusal to inform relatives. (shrink)