Background The purpose of this study is to explore laypersons' attitudes toward the use of archived (existing) materials such as medical records and biological samples and to compare them with the attitudes of physicians who are involved in medical research. Methods Three focus group interviews were conducted, in which seven Japanese male members of the general public, seven female members of the general public and seven physicians participated. Results It was revealed that the lay public expressed diverse attitudes towards the (...) use of archived information and samples without informed consent. Protecting a subject's privacy, maintaining confidentiality, and communicating the outcomes of studies to research subjects were regarded as essential preconditions if researchers were to have access to archived information and samples used for research without the specific informed consent of the subjects who provided the material. Although participating physicians thought that some kind of prior permission from subjects was desirable, they pointed out the difficulties involved in obtaining individual informed consent in each case. Conclusions The present preliminary study indicates that the lay public and medical professionals may have different attitudes towards the use of archived information and samples without specific informed consent. This hypothesis, however, is derived from our focus groups interviews, and requires validation through research using a larger sample. (shrink)

ABSTRACT Objectives: the purpose of this study is to explore laypersons’ attitudes towards and experiences of medical research, and to compare them with those of physicians in Japan. Designs and Participants: fourteen Japanese adults from the general public and seven physicians participated in one of three focus interviews. Setting: Osaka, Japan. Results: trust and distrust in the physician by whom the participants were invited to participate in research played a considerable role in their decisions about participation. That the participants felt (...) an obligation to participate was also expressed. The lay participants perceived medical research as something entirely outside of their world. A greater willingness to volunteer for research was expressed if there were direct benefits to themselves or their families. Research methods such as use of placebos, double blinds, and randomisations seemed to cause negative attitudes to medical research. All physicians were convinced of the need for medical research, including double‐blinded randomised control trials, and its significant role in medical progress. Most physicians thought that the greater awareness of the need for medical research in the community and a better understanding of the psychology of potential research participants were necessary and urgent. Conclusions: there is a good possibility that the lay public and medical professionals have sharply different beliefs about and attitudes towards every aspect of medical research. Building up a better and equal patient‐doctor relationship based on trust is a key issue in medical research, and it is mandatory to fill the gap in perception regarding medical research between them through fully informed debates. (shrink)

The objective of this study was to reveal the problems related to interpersonal relationships which patients with obstinate diseases face, and consider the behavior, attitude and medical intervention that healthcare and healthcare-related professions should take in regards to these problems. Semi-structured individual interviews were conducted with patients with obstinate neurological diseases and observation of outpatient care was also conducted. Data were analyzed by qualitative content analysis. Patient diseases included Parkinson Disease , Amyotrophic Lateral Sclerosis , myasthenia gravis, spinocerebellar ataxia , (...) and progressive supranuclear palsy . Findings highlighted that patients’ disease and suffering was not understood fully by patients’ families, that patients feel a lack of family support and cooperation, and that society’s level of understanding of their disease was also insufficient. Again, findings revealed that patients recognized their inability to perform personal activities and to behave competently within the contexts of family and society. This lowered their self evaluation. These findings highlight three needs: “the need for empathy,” “the need for self the “the need for empathy” and “the need for self esteem.”This study was supported by a great-in-aid by Ministry of Health, Labor and Welfare in Japan, “Outcomes Research of Specific Diseases”（PI:S.Fukuhara）（Grand no: H14-44）. (shrink)

The ethics in an information society is discussed from the combined viewpoint of Eastern and Western thoughts. The breakdown of a coherent self threatens the Western ethics and causes nihilism. Francisco Varela, one of the founders of Autopoiesis Theory, tackled this problem and proposed Enactive Cognitive Science by introducing Buddhist middle-way philosophy. Fundamental Informatics gives further insights into the problem, by proposing the concept of a hierarchical autopoietic system. Here the ethics can be described in relation to a community rather (...) than a coherent self. The philosophical bridge between East and West is expected to solve the ethical aporia in the 21st century. (shrink)