Bioethics and biotechnology

Biotechnology is at the intersection of science and ethics. Technological developments are shaped by an ethical vision, which in turn is shaped by available technology. Much in biotechnology can be celebrated for how it benefits humanity. But technology can have a darker side. Biotechnology can produce unanticipated consequences that cause harm or dehumanise people. The ethical implications of proposed developments must be carefully examined. The ethical assessment of new technologies, including biotechnology, requires a different approach to ethics. Changes are necessary because new technology can have a more profound impact on the world; because of limitations with a rights-based approach to ethics; because of the importance and difficulty of predicting consequences; and because biotechnology now manipulates humans themselves. The ethical questions raised by biotechnology are of a very different nature. Given the potential to profoundly change the future course of humanity, such questions require careful consideration. Rather than focussing on rights and freedoms, wisdom is needed to articulate our responsibilities towards nature and others, including future generations. The power and potential of biotechnology demands caution to ensure ethical progress.     

Anthropological and Sociological Critiques of Bioethics

Anthropologists and sociologists offer numerous critiques of bioethics. Social scientists criticize bioethicists for their arm-chair philosophizing and socially ungrounded pontificating, offering philosophical abstractions in response to particular instances of suffering, making all-encompassing universalistic claims that fail to acknowledge cultural differences, fostering individualism and neglecting the importance of families and communities, and insinuating themselves within the “belly” of biomedicine. Although numerous aspects of bioethics warrant critique and reform, all too frequently social scientists offer ungrounded, exaggerated criticisms of bioethics. Anthropological and sociological critiques of bioethics are hampered by the tendency to equate bioethics with clinical ethics and moral theory in bioethics with principlist bioethics. Also, social scientists neglect the role of bioethicists in addressing organizational ethics and other “macro-social” concerns. If anthropologists and sociologists want to provide informed critiques of bioethics they need to draw upon research methods from their own fields and develop richer, more informed analyses of what bioethicists say and do in particular social settings.     

法医学司法鉴定中吸毒与艾滋病群体隐私权与知情权的伦理学问题探讨

在法医学司法鉴定过程中,当事人所具有的隐私权与司法鉴定工作所需要的知情权之间必然存在着一定的矛盾与冲突。如何在尊重当事人隐私权的基础上充分获取司法鉴定工作所需的知情权,是司法鉴定机构在司法鉴定工作中所面临的重要任务。本文对法医学司法鉴定中吸毒与艾滋病群体隐私权与知情权的医学伦理学相关问题进行分析探讨。     

青海土族肤纹学研究

本文报道土族人群的肤纹参数,在知情同意手续下捺印对象的手纹和足纹,样本包括106名男性和108名女性,研究的项目有TFRC、a-b RC,atd,tPD、指纹、指间纹、手大小鱼际,猿线,大拇趾球纹,趾间纹,足小鱼际纹和足跟纹等。为人类学,遗传学和医学提供了较完整的数据集。     

Challenges of Macro-ethics: Bioethics and the Transformation of Knowledge Production

One interesting aspect of the Hwang-case has been the way in which this affair was assessed by academic journals such as Nature. Initially, Hwang’s success was regarded as evidence for the detrimental effects of research ethics, slowing down the pace of research in Western countries. Eventually, however, Hwang’s debacle was seen as evidence for the importance of ethics in the life sciences. Ironically, it was concluded that the West maintains its prominence in science (as a global endeavour) precisely because it has its ethics in place. Bioethics was now seen as an indispensable part of quality control. In this article, I will claim that the Hwang case rather reveals that there is no reason for complacency and that there are substantial challenges awaiting us. They have to do with major transformations in the way knowledge is produced and research in the life sciences is conducted (such as the increase in pace and scale, globalisation and the growing importance of ICT and bioinformation). These transformations call for a different kind of bioethics. The focus must shift from duties of autonomous researchers concerning visible research subjects (“micro-ethics”) to responsibilities of institutionalised research networks in managing and processing large amounts of bioinformation (“macro-ethics”). Concepts such as transparency, reliability and benefit-sharing will become more important than concepts such as informed consent. Basically, it is a resurgence of the tension between the Kantian and the Hegelian view of ethics. The contours of macro-ethics will be elaborated notably as it is emerging in bioethical debates over biobanking and genetic databanks.

Western Notions of Informed Consent and Indigenous Cultures: Australian Findings at the Interface

Despite the extensive consideration the notion of informed consent has heralded in recent decades, the unique considerations pertaining to the giving of informed consent by and on behalf of Indigenous Australians have not been comprehensively explored; to the contrary, these issues have been scarcely considered in the literature to date. This deficit is concerning, given that a fundamental premise of the doctrine of informed consent is that of individual autonomy, which, while privileged as a core value of non-Indigenous Australian culture, is displaced in Indigenous cultures by the honouring of the family unit and community group, rather than the individual, as being at the core of important decision-making processes relating to the person. To address the hiatus in the bioethical literature on issues relating to informed consent for Aboriginal peoples, the following article provides findings from a two-year research project, funded by Australia’s National Health and Medical Research Council (NHMRC), conducted in the Northern Territory. The findings, situated in the context of the literature on cultural safety, highlight the difference between the Aboriginal and biomedical perspectives on informed consent.     

The Principle of Caveat Emptor: Confidentiality and Informed Consent as Endemic Ethical Dilemmas in Focus Group Research

Informed consent and confidentiality supposedly minimize harm for research participants in all qualitative research methodologies, inclusive of one-on-one unstructured interviews and focus groups. This is not the case for the latter. Confidentiality and informed consent uniquely manifest themselves as endemic ethical dilemmas for focus group researchers. The principle of caveat emptor (let the buyer beware) may be a more useful tool for those involved in focus group research: that is, let the researcher, the participants and the ethics committee beware that the only ethical assurance that can be given to focus group participants is that there are few ethical assurances. These ethical dilemmas are not sufficiently realized in the literature, and if they are discussed, they are often dealt with within the focus group moderator’s preamble to the group discussion. This paper encourages the mandatory use of a participant information sheet sufficiently detailed to engender the participant’s active consent. Sufficient here means the participant must be made adequately aware of these endemic ethical dilemmas in advance, to allow them to consent to share responsibility for any ensuing harm. The focus group moderator is not their sole protector.     

Informed consent to tissue donation: policies and practice

Nearly 10 years ago, the tissue industry’s informed consent practices with donor families in the United States were criticized. In response, the industry, along with the Inspector General of the Department of Health and Human Services, suggested elements to be included in the informed consent process. This study examines which of these elements were present in the informed consent documents of 45 (78%) of the nation’s 58 Organ Procurement Organizations (OPOs). Some elements, such as involvement of for-profit companies, were present in almost all. Others, such as labeling tissue as a gift from donor families, never were. The authors conclude that the time is ripe for reexamination of the informed consent process with an eye to meaningful consent that promotes the benefits of tissue transplantation and at the same time protects the rights and interests of donor families; can be realistically implemented; and, maintains the trust of the American public.     

The Role of Regret in Informed Consent

Informed consent to medical procedures tends to be construed in terms of principle-based ethics and one or other form of expected utility theory. These constructions leave problems created by imperfect communication; subjective distress and other emotions; imperfect knowledge and incomplete understanding; complexity, and previous experience or the lack of it. There is evidence that people giving consent to therapy or to research participation act intuitively and assess consequences holistically, being influenced more by the magnitude of outcomes than their probability. People avoid decisions they may regret, but modern regret theory has received little attention in discussions of informed consent. This essay suggests ways in which regret may be acknowledged in the consent process and in the assessment of the information that is an intrinsic part of it.     

Origin Myths in Bioethics: Constructing Sources,Motives and Reason in Bioethic(s)

Bioethics, the term now usually standing in for Biomedical Ethics, is a field of medical anthropological engagement. While many anthropologists and other social scientists work with bioethicists and physicians, this paper instead takes Bioethics as a topic of cultural research from the perspective of Cultural Bioethics and Interpretive Medical Anthropology. Application of useful findings of vintage anthropological research in cultural anthropology and the anthropology of religion and an interpretive lens reveal a field without a single origin or unified methodology. The paper suggests the appropriateness of a literal meaning of current conceptual commonality of the term Bioethics: that the term does in fact refer to a plurality of distinct enterprises with distinct origins and, hence, justifications.     

Psychosocial and legal aspects of oncological treatment in patients with cognitive impairment

With society getting older and affected by many diseases, more and more people suffer from severe cognitive disorders. As practice shows, the legal situations of such people is often problematic. This is due to a number of factors, such as short time since the deterioration of patient''s condition, initial symptoms ignored, social prejudice towards the idea of incapacitation or taking decisions for a patient, complicated procedures and, sometimes, insufficient knowledge of legal regulations. Cognitive disorders also occur in patients treated for cancer. To be effective, oncological treatment needs to be started as early as possible. This, however, does not meet the criteria of sudden threat to life. The present article relates to both the psychosocial and legal aspects of care of people suffering from intense disorders of memory, attention, problem solving, executive functions, and other. Surely, physicians know how to handle patients with the above dysfunctions. However, legal procedures aimed to protect patients’ rights are often unclear and time consuming. In practice, this often amounts to a dilemma whether to treat or follow the applicable law. Certainly, solutions in this regard should be clearer and better adapted to the needs arising from specific treatment needs of particular groups of patients.     

The Use of Human Tissue

The use of human tissue raises ethical issues of great concern to health care professionals, biomedical researchers, ethics committees, tissue banks and policy makers because of the heightened importance given to informed consent and patient autonomy. The debate has been intensified by high profile scandals such as the “baby hearts” debacle and revelations about the retention of human brains in neuropathology laboratories worldwide. Respect for patient’s rights seems, however, to impede research and development of clinical knowledge in contemporary health care. The Common clinical endeavour argument and a Presumption for beneficial use argument suggest that the use of tissues for research and teaching in contemporary health care can respect patients and their values in multicultural communities where there are provisions for oversight and for opting not to contribute, both of which should respect the diverse views of different ethnic or cultural groups.

Reconciliation and Australian Indigenous Health in the 1990s: A Failure of Public Policy

In 1991, the Australian Commonwealth Parliament unanimously passed the Council for Aboriginal Reconciliation Act 1991. This Act implemented a 10-year process that aimed to reconcile Indigenous and non-Indigenous people by the end of 2000. One of the highest priorities of the reconciliation process was to address Indigenous socio-economic disadvantage, including health, education and housing. However, despite this prioritising, both the Keating Government (1991–1996) and the Howard Government (1996–2000) failed to substantially improve socio-economic outcomes for Indigenous people over the reconciliation decade. In this paper, I examine one of the most prominent socio-economic areas, that of Indigenous health. First, I discuss the appalling levels of Indigenous health throughout the reconciliation decade by analysing a number of health indicators, including life expectancy, infant mortality rate, standard mortality ratios, hospital rates and health Infrastructure. This analysis reveals significant and often worsening disadvantage in these health indicators. Second, I analyse a number of policies and programs concerning Indigenous socio-economic disadvantage that were developed by Commonwealth Governments in the 1990s. I argue that these policies and programs largely failed to address Indigenous socio-economic disadvantage. I also discuss alternative policies and programs that could reduce the significant levels of socio-economic disadvantage suffered by Indigenous people.     

Patients as Rational Traders: Response to Stewart and DeMarco

Stewart and DeMarco’s economic theory of patient decision-making applied to the case of diabetes is flawed by clinical inaccuracies and an unrealistic depiction of patients as rational traders. The theory incorrectly represents patients’ struggles to optimize their management as calculated trade-offs against the costs of care, and gives an unrealistic, inflexible account of such costs. It imputes to physicians the view that their patients’ lack of compliance is unreasonable, but physicians are accustomed to the variety of human factors which contribute to suboptimal compliance, and work with patients to minimize their influence. By depicting patients as rational traders rather than human beings with a range of motivations and burdens, the economic theory distorts the proper function of informed consent.     

The Nature and Value of Bioethics Expertise

In this article, I address the extent to which experts in bioethics can contribute to healthcare delivery by way of aid in clinical decision‐making and policy‐formation. I argue that experts in bioethics are moral experts, in that their substantive moral views are more likely to be correct than those of non‐bioethicists, all else being equal, but that such expertise is of use in a relatively limited class of cases. In so doing, I respond to two recent arguments against the view that bioethicists are moral experts, one by Christopher Cowley and another by David Archard. I further argue that bioethics experts have significant additional contributions to make to healthcare delivery, and highlight a hitherto neglected aspect of that contribution: amelioration of moral misconception among clinicians. I describe in detail several aspects of moral misconception, and show how the bioethicist is in a prime position to resolve that sort of error.     

Confused meanings of life, genes and parents

Questions concerning the moral status of embryos, the validity of new technologies for human reproduction, ownership of one's own genes, gene patenting, privacy and discrimination have all been raised and debated. Although debate is healthy, it is only useful if all participants understand the fundamental biological principles underlying human life, human genes and human parenthood. Many people believe that science can play no role in determining when human life begins. I argue that this false assumption is based on a failure to separate different contradictory meanings of the term ‘human life’. In actuality, science has provided great insight into when and how human life and human beings come into existence. I argue as well that, contrary to our intuitive feelings, there is no physical connection between any father and his son; shared genes represent shared information and nothing more. Nevertheless, the feeling of a physical connection between parent and child is very real and instinctive, no matter how false it may be. These new understandings have profound ramifications for the way we treat issues surrounding human reproduction, including both abortion and assisted reproductive technologies.     

Donor Perspectives on Issues Associated with Donation of Genetic Samples and Information: An Australian Viewpoint

This paper provides a legal overview of key issues associated with donation of genetic samples and information from a donor perspective. In particular, it addresses the property status of samples as well as issues in respect of consent, privacy, commercialisation and benefit sharing. The paper highlights the need for appropriate protection and safeguards for individuals, but also, importantly, for understanding what donors actually think and want in terms of genetic research and the use of their samples and information. The paper seeks to emphasise the importance of transparency and accountability in the conduct of research in order to maximise donor participation and confidence and public trust in general.

A View of Comparative Endocrinology and Aubrey Gorbman

Analyses of papers published in General and Comparative Endocrinologyfrom 1961 to 1981 were made from several aspects. Number ofpapers published has increased year after year. Molluscan endocrinologypapers have increased and overtaken annelid publications. Duringthe past 20 yr studies using crustaceans and insects have comprised25–50% of all endocrine research on invertebrate groups.Papers on protochordates, elasmobranchs, and cyclostomes arefew but constant in number, indicating that these three groupsare important from phylogenic aspects. Studies on birds andteleosts have increased, while those on amphibians have decreased.Biochemical techniques were employed in 50% of all publicationsin this journal. Radioimmunoassay has replaced autoradiography.Immunohistochemistry increased in popularity. Studies on thepars distalis and gonads are predominant among all endocrineorgans. Research at the molecular level is decreasing, but isincreasing at the organismal level. Research at the organismallevel may be characteristic of comparative endocrinology. Largelythrough the initiative of Aubrey Gorbman, General and ComparativeEndocrinology was first published in 1961, and the InternationalCommittee of the Symposium on Comparative Endocrinology wasformed in 1957. Gorbman has produced many students. His originaland important contributions are in diversified areas: thyroidphysiology and its evolution, hormones and the brain and behavior,cyclostome endocrinology and neurosecretory systems in lowervertebrates. In addition, he has influenced investigators throughhis ideas of evolution. He has had particular impact on thedevelopment of comparative endocrinology in Japan.