Ethical aspects of genome diversity research: genome research into cultural diversity or cultural diversity in genome research?

The goal of the Human Genome Diversity Project (HGDP) was to reconstruct the history of human evolution and the historical and geographical distribution of populations with the help of scientific research. Through this kind of research, the entire spectrum of genetic diversity to be found in the human species was to be explored with the hope of generating a better understanding of the history of humankind. An important part of this genome diversity research consists in taking blood and tissue samples from indigenous populations. For various reasons, it has not been possible to execute this project in the planned scope and form to date. Nevertheless, genomic diversity research addresses complex issues which prove to be highly relevant from the perspective of research ethics, transcultural medical ethics, and cultural philosophy. In the article at hand, we discuss these ethical issues as illustrated by the HGDP. This investigation focuses on the confrontation of culturally diverse images of humans and their cosmologies within the framework of genome diversity research and the ethical questions it raises. We argue that in addition to complex questions pertaining to research ethics such as informed consent and autonomy of probands, genome diversity research also has a cultural–philosophical, meta-ethical, and phenomenological dimension which must be taken into account in ethical discourses. Acknowledging this fact, we attempt to show the limits of current guidelines used in international genome diversity studies, following this up by a formulation of theses designed to facilitate an appropriate inquiry and ethical evaluation of intercultural dimensions of genome research.     

Personal autonomy and informed consent

Two ways of understanding the notion of autonomy are outlined and discussed in this article, in order to clarify how and if informed consent requirements in biotechnological research are to be justified by the promotion of personal autonomy: A proceduralist conception linking autonomy with authenticity, and a substantivist conception linking autonomy with control. The importance of distinguishing autonomy from liberty is emphasised, which opens for a possible conflict between respecting the freedom and the autonomy of research participants. It is argued that this has implications for how consent requirements based on different criteria of specificity and understanding should be viewed and justified.     

Teenagers with type 1 diabetes--a phenomenological study of the transition towards autonomy in self-management

BACKGROUND: Becoming autonomous is an important aspect of teenagers' psychosocial development, and this is especially true of teenagers with type 1 diabetes. Previous studies exploring the everyday problems of teenagers with diabetes have focused on adherence to self-care management, how self-determination affects metabolic control, and the perception of social support. OBJECTIVE: The aim of the study was to elucidate lived experiences, focusing on the transition towards autonomy in diabetes self-management among teenagers with type 1 diabetes. DESIGN AND METHOD: Data were collected using interviews, and a qualitative phenomenological approach was chosen for the analysis. PARTICIPANTS: Thirty-two teenagers (18 females and 14 males) were interviewed about their individual experiences of self-management of diabetes. FINDINGS: The lived experiences of the transition towards autonomy in self-management were characterized by the over-riding theme "hovering between individual actions and support of others". The findings indicate that individual self-reliance and confirmation of others are helpful in the transition process. Growth through individual self-reliance was viewed as a developmental process of making one's own decisions; psychological maturity enabled increased responsibility and freedom; motivation was related to wellbeing and how well the diabetes could be managed. The theme "confirmation of others" showed that parental encouragement increased the certainty of teenagers' standpoints; peers' acceptance of diabetes facilitated incorporation of daily self-management activities; support from the diabetes team strengthened teenagers' self-esteem. CONCLUSION: In striving for autonomy, teenagers needed distance from others, but still to retain the support of others. A stable foundation for self-management includes having the knowledge required to practice diabetes management and handle different situations.     

What surgeons tell their patients about the intraoperative role of residents: a qualitative study

Background

The issue of residents operating and disclosure to patients about this have not been explored from staff surgeons' perspectives.

Methods

A preliminary survey was sent to all active surgeons at the University of Toronto. A qualitative interview study followed. Thirty-nine face-to-face interviews were conducted with surgeons. Interviews were transcribed and subjected to thematic analysis by 3 reviewers.

Results

Four encompassing themes emerged: (1) surgeons are comfortable allowing residents to operate independently with graded responsibility, (2) surgeons do not voluntarily inform patients about the involvement of residents in their operation, (3) residents are seen as important assets in a teaching hospital and are beneficial to patient care, and (4) surgeons recognize the trust their patients place in them.

Conclusions

Surgeons recognize their patient care and teaching responsibilities and the trust that is placed in them. Patients might benefit from a discussion with their surgeon about the role of residents in their surgery.     

Extending Our View on Using BCIs for Locked-in Syndrome

Locked-in syndrome (LIS) is a severe neurological condition that typically leaves a patient unable to move, talk and, in many cases, initiate communication. Brain Computer Interfaces (or BCIs) promise to enable individuals with conditions like LIS to re-engage with their physical and social worlds. In this paper we will use extended mind theory to offer a way of seeing the potential of BCIs when attached to, or implanted in, individuals with LIS. In particular, we will contend that functionally integrated BCIs extend the minds of individuals with LIS beyond their bodies, allowing them greater autonomy than they can typically hope for in living with their condition. This raises important philosophical questions about the implications of BCI technology, particularly the potential to change selves, and ethical questions about whether society has a responsibility to aid these individuals in re-engaging with their physical and social worlds. It also raises some important questions about when these interventions should be offered to individuals with LIS and respecting the rights of these individuals to refuse intervention. By aiding willing individuals in re-engaging with their physical and social worlds, BCIs open up avenues of opportunity taken for granted by able individuals and introduce new ways in which these individuals can be harmed. These latter considerations serve to highlight our emergent social responsibilities to those individuals who will be suitable for, and receive, BCIs.

Extensively drug-resistant bacteria: Which ethical issues?

Objective

The increased bacterial resistance to antibiotics has now become a public health concern. How can we preserve the well-being of patients presenting with infections caused by extensively drug-resistant bacteria (EDRBs) and that of their contacts without inducing any loss of chance of survival, all the while living together and controlling the spread of these EDRBs?

论“合作运动”中伦理精神对我国新型农村合作医疗制度建设的意义

20世纪20年代到30年代，在国民党、共产党以及各界社会人士的推动下，中国农村展开了一场轰轰烈烈的合作运动，虽然最终没有达到复兴农村的目的，但是其中所包含的农民自治精神、政策务实性、教育理念、调查研究中的实证精神等对于当今的新型农村合作医疗制度及新农村建设都具有重要的启示意义。     

What are cancer patients’ preferences about treatment at the end of life,and who should start talking about it? A comparison with healthy people and medical staff

Goals of the work In order to strengthen cancer patients autonomy and to improve quality of palliative care, it is necessary to know what are the patients preferences for treatment at the end of life, whether they accept the idea of advance directives, and who should initiate the process of fulfilling such a document.Patients and methods We compared cancer patients preferences with respect to particular treatment options at the end of life, acceptance of the idea of advance directives, and preferences for whom should initiate writing such a document with that of healthy controls, nursing staff, and physicians (n=100 each group) using a structured questionnaire.Results Cancer patients wanted treatment with antibiotics and infringing treatments such as chemotherapy and dialysis significantly more often than healthy controls, nursing staff, and physicians (p<0.01 and p<0.001, respectively). Determinants associated with the wish to opt for these treatments were reduced health condition and older age. The groups did not differ with respect to their acceptance of advance directives; 58–75% of all those surveyed wanted their physicians to initiate a discussion about writing such a document if they thought it appropriate.Conclusions Cancer patients preferences for treatment at the end of life significantly differ compared to other groups. Oncologists should initiate a discussion about an advance directive when/if the course of the illness seems to make this appropriate, which corresponds to the wish of the majority of cancer patients, healthy controls, and medical staff.Parts of this work were presented during the 26th German Cancer Conference, Berlin, Germany, 27 February–1 March 2004.This paper contains work of the doctoral thesis of one of the authors (WR) submitted to the faculty of medicine at the Johannes-Gutenberg-University, Mainz, Germany.Competing interest statement: The authors declare no competing interests.Ethics approval: The study was approved by the ethics committee of the Medical Council of the State of Hesse, Frankfurt, Germany.     

Truth-telling in a culturally diverse world

Until recently physicians have been reluctant to disclose a poor prognosis to patients for fear of harming them with the bad news and/or taking away their will to live. In the last decades we have seen a reversal of practice among Western physicians, and most doctors readily disclose to their patients the full extant of their disease. This change is probably due to the emphasis on patient autonomy in the doctor-patient relationship and the lack of evidence that hearing the bad news impacts significantly on patient outcomes. This emphasis on complete honesty with patients might not reflect the practice in non-Western cultures. In disclosing a poor prognosis to a patient the physician must do so with cultural sensitivity, compassion and letting the patient decide how much he or she wants to know.     

罗夏测验自主同一性量表的结构效度研究

目的 探讨罗夏测验自主同一性量表的结构效度.方法 对随机抽取的32例被试者进行罗夏测验并进行自主同一性量表(MOA)记分.采用探索性因素分析法在SPSS11.0上进行统计分析.结果 因素分析抽出3个因子,DA、SI、SA在一个因素上负荷量最大,MC、OE聚为另一个因素,RA、DI在第三个因素上负荷最大.结论 罗夏测验自主同一性量表在中国人群中使用有较好的结构效度.