Nelson E, Ogbogu U, Caulfield T. An investigation of embryo donation, informed consent, and research oversight in Canadian human embryonic stem cell research. Journal of Obstetrics & Gynaecology Canada: JOGC 2007;29(12):997–1002.
Despite considerable policy attention given to human embryonic stem cell (hESC) research, very few researchers and clinics are actually involved in the research in Canada. Although only cryopreserved embryos are currently being used in Canadian hESC research, one researcher has applied to use fresh embryos. At this crucial time in Canadian hESC research, these authors investigated Canadian hESC researchers’ and fertility clinics’ compliance with applicable regulations related to providing embryos for research. Their aim was to ascertain actual consent practices in the hESC research context. Using different questionnaires, they did telephone interviews with all hESC researchers and e-mail interviews with fertility clinics that provide embryos to these researchers. They also reviewed the consent forms currently used for donation of embryos to hESC research. Three of the four involved fertility clinics responded. These clinics play a primary role in the consent process; researchers have no contact with the patients/donors. The authors found that although both the academic literature and the popular press have suggested a lack of Canadian hESC researchers’ compliance with the regulations, both the researchers and the clinics reported that they are in substantial compliance, with the researchers appearing to be very conscious of the ethics of hESC research. Of particular note, the surveyed researchers stated that they are frustrated by the lack of regulatory clarity and by delays in the research oversight process.
Chwang E, Landy DC, Sharp RR. Views regarding the training of ethics consultants: A survey of physicians caring for patients in ICU. Journal of Medical Ethics 2007;33(6):320–4.
Despite the expansion of ethics consultation services, questions remain about the aims of clinical ethics consultation, its methods, and the expertise of those who provide such services. These authors used a mailed survey to intensive care unit (ICU) physicians. In most institutions, ICU physicians are the most common source of ethics consultation, so it seemed important to discover their expectations regarding the training and skills necessary for ethics consultants to contribute effectively to patient care in that setting. The physicians receiving this survey were responsible for the care of at least 10 patients in the ICU over a 6-month period at a 921-bed private teaching hospital with an established ethics consultation service. Sixty-nine of 92 (75%) eligible physicians responded. The authors asked about the importance of specialized knowledge and skills for ethics consultants contributing to the care of patients in ICU, the need for advanced disciplinary training, and their expectations regarding formal training programs for ethics consultants. Respondents described expertise in ethics as most important for ethics consultants taking part in the care of patients in ICU, compared with expertise in law (p < .03), religious traditions (p < .001), medicine (p < .001), and conflict-mediation techniques (p < .001). When asked about the formal training consultants should possess, however, these ICU physicians most often identified advanced medical training as important. They concluded that although many physicians caring for patients in ICU believe ethics consultants must possess nonmedical expertise in ethics and law if they are to contribute effectively to patient care, these physicians place a very high value on medical training as well, suggesting a “medicine plus one” view of the training of an ideal ethics consultant. As ethics consultation services expand, the authors suggest that clear expectations regarding the training of ethics consultants should be established.
American Academy of Hospice and Palliative Medicine. Position statement on physician-assisted death. Journal of Pain & Palliative Care Pharmacotherapy 2007;21(4):55–7.
Deep disagreement persists about the morality of physician-assisted death (PAD), and sincere, compassionate, and morally conscientious individuals stand on both sides of this debate. Situations in which patients or their surrogates request PAD are particularly challenging for physicians and other healthcare providers because they raise significant clinical, ethical, and legal issues. Reflecting this ambivalence, the American Academy of Hospice and Palliative Medicine (AAHPM), through the Academy's Ethics Committee, issued a position described as “studied neutrality,” that they said is intended to stimulate thinking and discussion about how best to respond to the urgent needs of the few dying patients who continue to suffer despite expert palliative care. In reality, their position breaks no new ground, simply restating the conservative legal position that already exists throughout the bioethics and legal literature. In essence, they say that the clinician should do everything possible to avoid the patient making a request for PAD, should question whether such a request is ethical and legal, and should try to sidestep the issue whenever possible. Then, rather gratuitously, they say that they do not suggest that physicians or healthcare providers be forced to deliver care they see as harmful or wrong, and they want all patients to continue to receive the best possible palliative care, whatever decisions are made regarding PAD.
Ikingura JK, Kruger M, Zeleke W. Health research ethics review and needs of institutional ethics committees in Tanzania. Tanzania Health Research Bulletin 2007;9(3):154–8.
The need for ethical guidance for human research has spread quickly around the globe. One indication is this study, undertaken by the Tanzanian National Institute for Medical Research, which describes the performance of health research ethics review procedures at the country's six research centers. The authors used a self-administered questionnaire and personal interviews to collect the data. They found that each Research Ethics Committee had, on average, 11 members (range: 8–14). However, female representation in the committees was low (15%). Biomedical scientists (52%) made up the largest proportion of the committee members. Others included physicians (20%), social scientists (8%), laboratory technologists (11%), religious leaders (5%), statisticians (3%), teachers (2%), and lawyers (2%). Committee members had differing abilities to review research proposals (none: 2%; limited: 15%; moderate: 20%; good: 48%; excellent: 13%). Only half of the respondents had prior ethics review training. Although the majority deemed that ethical guidelines were very important (66%), their challenges in using ethical guidelines included a lack of awareness of the national accreditation mechanisms for ethics committees (59%). Adherence to ethical principles and regulations was influenced by being a scientist (OR: 42), being an employee of a professional organization (OR: 15), and having an interest in the use of ethical guidelines (OR: 11). These authors concluded that Tanzania's Research Ethics Committees needed more training and support and the inclusion of more female representation and other professionals.
Giacomini M, Baylis F, Robert J. Banking on it: Public policy and the ethics of stem cell research and development. Social Science & Medicine 2007;65(7):1490–500.
Heads up! Stem cells may very soon be a part of many aspects of clinical medicine, and the ethical implications may be complex and far-reaching. These authors say that if the therapeutic potential of stem-cell-based therapies is ever realized, demand for stem cells and derivative tissues will be tremendous and will create new challenges for healthcare systems, especially those that are publicly funded. They propose a framework for the ethical analysis of stem cell research and development that considers the welfare of communities, tissue recipients, and cell sources in relation to a range of stem cell production and distribution options. The ethical elements they would like to see are equitable access, maximized potential therapeutic benefit across demographic and disease groups, and reasonable cost. Other ethical priorities include the minimization of stem cell line and tissue wastage, risk of immune rejection, risk of transmitting diseases, the use of human embryos, and risk to those contributing source cells. Describing plausible sources of stem cells and distribution strategies, the authors characterize 12 potential models for producing and distributing cells and tissues. They describe “personalized,” “matched,” and “universalized” models and compare their ethical acceptability. Although popular and scientific discourses about stem cells typically emphasize personalized or matched stem cell distribution models, the authors attempt to show that universalized models may ultimately best serve the interest of taxpayers, communities, and patients who hold high stakes in the therapeutic success of stem cell science and are therefore highly worthy of scientific pursuit. The authors do concede that their conclusions are provisional and future scientific advances may change the entire picture.
