The basis of informed consent for BMT patients.
During recent decades the doctrine of informed consent has become a standard part of medical care as an expression of patients' rights to self-determination. In situations when only one treatment alternative exists for a potential cure, the extent of a patient's self-determination is constrained. Our hypothesis is that for patients considering a life-saving procedure such as bone marrow transplant (BMT), informed consent has little meaning as a basis for their right to self-determination. A longitudinal study of BMT patients was undertaken with four self-administered questionnaires. Questions centered around expectations, knowledge, anxiety and factors contributing to their decision to undergo treatment. Although the informed consent process made patients more knowledgeable about the treatment, their decision to consent was largely based on positive outcome expectations and on trust in the physician. Informed consent relieved their anxieties and increased their hopes for survival. Our conclusion was that the greatest value of the informed consent process lay in meeting the patients' emotional rather than cognitive needs. When their survival is at stake and BMT represents their only option, the patient's vulnerability puts a moral responsibility on the physician to respect the principle of beneficence while not sacrificing the patient's right to self-determination. (+info)
Should we clone human beings? Cloning as a source of tissue for transplantation.
The most publicly justifiable application of human cloning, if there is one at all, is to provide self-compatible cells or tissues for medical use, especially transplantation. Some have argued that this raises no new ethical issues above those raised by any form of embryo experimentation. I argue that this research is less morally problematic than other embryo research. Indeed, it is not merely morally permissible but morally required that we employ cloning to produce embryos or fetuses for the sake of providing cells, tissues or even organs for therapy, followed by abortion of the embryo or fetus. (+info)
Should doctors intentionally do less than the best?
The papers of Burley and Harris, and Draper and Chadwick, in this issue, raise a problem: what should doctors do when patients request an option which is not the best available? This commentary argues that doctors have a duty to offer that option which will result in the individual affected by that choice enjoying the highest level of wellbeing. Doctors can deviate from this duty and submaximise--bring about an outcome that is less than the best--only if there are good reasons to do so. The desire to have a child which is genetically related provides little, if any, reason to submaximise. The implication for cloning, preimplantation diagnosis and embryo transfer is that doctors should only produce a clone or transfer embryos expected to enjoy a level of wellbeing which is less than that enjoyed by other children the couple could have, if there is a good reason to employ that technology. This paper sketches what might constitute a good reason to submaximise. (+info)
Genetic privacy: orthodoxy or oxymoron?
In this paper we question whether the concept of "genetic privacy" is a contradiction in terms. And, if so, whether the implications of such a conclusion, inevitably impact on how society comes to perceive privacy and responsibility generally. Current law and ethical discourse place a high value on self-determination and the rights of individuals. In the medical sphere, the recognition of patient "rights" has resulted in health professionals being given clear duties of candour and frankness. Dilemmas arise, however, when patients decline to know relevant information or, knowing it, refuse to share it with others who may also need to know. This paper considers the notions of interconnectedness and responsibility to others which are brought to the fore in the genetic sphere and which challenge the primacy afforded to personal autonomy. It also explores the extent to which an individual's perceived moral obligations can or should be enforced. (+info)
Genetically determined obesity in Prader-Willi syndrome: the ethics and legality of treatment.
A central characteristic of people with Prader-Willi Syndrome (PWS) is an apparent insatiable appetite leading to severe overeating and the potential for marked obesity and associated serious health problems and premature death. This behaviour may be due to the effects of the genetic defect resulting from the chromosome 15 abnormalities associated with the syndrome. We examine the ethical and legal dilemmas that can arise in the care of people with PWS. A tension exists between a genetic deterministic perspective and that of individual choice. We conclude that the determination of the capacity of a person with PWS to make decisions about his/her eating behaviour and to control that behaviour is of particular importance in resolving this dilemma. If the person is found to lack capacity, the common law principles of acting in a person's "best interests" using the "least restrictive alternative" may be helpful. Allowing serious weight gain in the absence of careful consideration of these issues is an abdication of responsibility. (+info)
Protective truthfulness: the Chinese way of safeguarding patients in informed treatment decisions.
The first part of this paper examines the practice of informed treatment decisions in the protective medical system in China today. The second part examines how health care professionals in China perceive and carry out their responsibilities when relaying information to vulnerable patients, based on the findings of an empirical study that I had undertaken to examine the moral experience of nurses in practice situations. In the Chinese medical ethics tradition, refinement [jing] in skills and sincerity [cheng] in relating to patients are two cardinal virtues that health care professionals are required to possess. This notion of absolute sincerity carries a strong sense of parental protectiveness. The empirical findings reveal that most nurses are ambivalent about telling the truth to patients. Truth-telling would become an insincere act if a patient were to lose hope and confidence in life after learning of his or her disease. In this system of protective medical care, it is arguable as to whose interests are being protected: the patient, the family or the hospital. I would suggest that the interests of the hospital and the family members who legitimately represent the patient's interests are being honoured, but at the expense of the patient's right to know. (+info)
Responses by four Local Research Ethics Committees to submitted proposals.
BACKGROUND: There is relatively little research concerning the processes whereby Local Research Ethics Committees discharge their responsibilities towards society, potential participants and investigators. OBJECTIVES: To examine the criteria used by LRECs in arriving at their decisions concerning approval of research protocols through an analysis of letters sent to investigators. DESIGN: Four LRECs each provided copies of 50 letters sent to investigators after their submitted proposals had been considered by the committees. These letters were subjected to a content analysis, in which specific comments and requests for additional information and changes in the protocols were recorded and compared. FINDINGS: Overall 24% of proposals were approved without request for changes or clarifications, but this varied by committee: one committee approved only 6% of proposals without change or clarification while the others ranged from 26% to 32%. The content analyses of responses indicated that they could be placed into four categories: (i) further information for the committee to aid in their deliberations; (ii) requests for changes to the design or justification for the design used; (iii) changes to the information sheets provided to potential participants; and (iv) changes to consent procedures. Of these, alterations to information sheets were the most common type of request. These four types of response could be seen as safeguarding the wellbeing of potential participants (the principle of non-maleficence), of promoting the scientific validity of the research (the principle of beneficence), and of enhancing the rights of potential participants (the principle of autonomy). CONCLUSIONS: The committees were consistent in the types of requests they made of investigators, which can be seen as attempts to protect participants' rights and ensure the scientific validity of studies. Without an analysis of the proposals sent to the committees, however, it is difficult to account for the variation in the requirements set by the committees before approval was given. (+info)
Ancient Chinese medical ethics and the four principles of biomedical ethics.
The four principles approach to biomedical ethics (4PBE) has, since the 1970s, been increasingly developed as a universal bioethics method. Despite its wide acceptance and popularity, the 4PBE has received many challenges to its cross-cultural plausibility. This paper first specifies the principles and characteristics of ancient Chinese medical ethics (ACME), then makes a comparison between ACME and the 4PBE with a view to testing out the 4PBE's cross-cultural plausibility when applied to one particular but very extensive and prominent cultural context. The result shows that the concepts of respect for autonomy, non-maleficence, beneficence and justice are clearly identifiable in ACME. Yet, being influenced by certain socio-cultural factors, those applying the 4PBE in Chinese society may tend to adopt a "beneficence-oriented", rather than an "autonomy-oriented" approach, which, in general, is dissimilar to the practice of contemporary Western bioethics, where "autonomy often triumphs". (+info)