Systems Bioethics and Stem Cell Biology

The complexities of modern science are not adequately reflected in many bioethical discussions. This is especially problematic in highly contested cases where there is significant pressure to generate clinical applications fast, as in stem cell research. In those cases a more integrated approach to bioethics, which we call systems bioethics, can provide a useful framework to address ethical and policy issues. Much as systems biology brings together different experimental and methodological approaches in an integrative way, systems bioethics integrates aspects of the history and philosophy of science, social and political theory, and normative analysis with the science in question. In this paper we outline how a careful analysis of the science of stem cell research can help to refocus the discussions related to the clinical applications of stem cells. We show how inaccurate or inadequate scientific assumptions help to create a set of unrealistic expectations and badly inform ethical deliberations and policy development. Systems bioethics offers resources for moving beyond the current impasse.     

Do adolescents' bioethical decisions differ from those of experts?

If our students are to become well-informed decision makers then they need to be aware of the practical applications of current developments in biotechnology, and appreciate the social and bioethical implications of this relatively new and controversial science. In this study, Year 10 (14 – 15 year old) science students in two schools were taught biotechnology courses that introduced them to bioethics. At the conclusion of the course, students completed a survey in which they made a decision about three bioethical dilemmas, and gave reasons to support their decision. The students' responses and reasons were compared with those of three experts. Although there was variation amongst students, the results of the survey suggested that the majority of students tended to resolve and justify their decisions in a way that was naive, idealistic, and rights based. Compared to the experts, the students seemed to give undue emphasis to the bioethical principle of autonomy. In addition, the reasons supplied by many of the students to support their decisions suggested that they did not consider long term consequences. These findings have ramifications for teachers who wish to include bioethical dilemmas in their teaching.     

“Bioethics in Action” and Human Population Genetics Research

Recent disputes about human population genetics research have been provoked by the field's political vulnerability (the historic imbalance of power between the geneticists and the people they study) and conceptual vulnerability (the mismatch between scientific and popular understandings of the genetic basis of collective identity). The small, isolated groups often studied by this science are now mobilizing themselves as political subjects, pressing sovereignty claims, and demanding control over the direction and interpretation of research. Negotiations between the geneticists and the people asked to donate DNA have resulted not only in explicit bioethics protocols but also in diffuse anxiety over the incommensurability between expert and non-expert views about genetic evidence for identity claims. This article compares two disputes over genetics research: the Human Genome Diversity Project and the use of genetics to prove identity claims among the Melungeons of Tennessee. The case studies illustrate “bioethics in action”: how particular controversies and interests drive the production of bioethics discourses and techniques (such as informed consent protocols). They also illustrate some limits on the usual apparatus of bioethics in overcoming this science's multiple vulnerabilities.     

Bioethics for human geneticists: models for reasoning and methods for teaching.

The ethical issues raised by the Human Genome Project (HGP) and by human genetics in general are not entirely novel. In fact, the ethical issues surrounding genetic research and the provision of genetic services fit into the evolution of bioethics, a field of inquiry which has its roots in concerns of the 1970s, concerns about the dignity and self-determination of individuals and about the development of medical technologies. Although bioethics has been largely occupied with patient-centered concerns, attention is currently shifting toward socially oriented issues, such as the justice of the existing health-care system. Genetic counseling has already incorporated many of the lessons of early bioethics and, as a profession, adheres to a consultand-centered ethic which reflects the values incorporated into the doctrine of informed consent, which is a cornerstone of bioethics. The mandate of the Ethical, Legal, and Social Implications Program of the HGP--to anticipate ethical problems arising from advances in genetics and to educate the public about genetics--reflects not only the nonpaternalistic approach of early bioethics but also bioethics' increasing attention to the ethical import of systemic and institutional factors, as well as an anticipatory and preventive approach to dealing with ethical concerns. Because bioethics has so much to contribute to current consideration of ethical issues in human genetics, it is important to provide training in ethics to those working in the field. Guidelines for using a case-oriented approach are suggested.     

Individual good and common good: a communitarian approach to bioethics

The field of bioethics emerged in the late 1960s and early 1970s. Among its early issues were the protection of human research subjects, the rights of patients, abortion, and reproductive issues. Partly as a reflection of the times, and of those issues, the field became focused on autonomy and individual rights, and liberal individualism came to be the dominant ideology in the 1980s and 1990s. Communitarianism, as an alternative ideology focused more on the common good and the public interest than on autonomy, was a neglected approach. But many bioethical issues can not reasonably be reduced to questions of individualism and choice only. Issues of genetics and reproduction will of necessity touch on the society as a whole, its values, and its social institutions. Serious ethical analysis must take the social implications seriously and not simply assume that they should be left to autonomous choices of individuals. Human beings are social animals and our nature is distorted if we think of ourselves only as co-existing social atoms. Various approaches to communitarianism are outlined, and the question of the relationship between individual good and common good is confronted.     

Ethics of fetal tissue transplantation.

Now that the Clinton Administration has overturned the ban on federal funding for fetal tissue transplantation, old ethical issues renew their relevance and new ethical issues arise. Is fetal tissue transplantation necessary and beneficial? Are fetal rights violated by the use of fetal tissue in research? Is there a moral danger that the potential of fetal tissue donation will encourage elective abortions? Should pregnant women be allowed to designate specific fetal transplant recipients? What criteria should be used to select fetal tissue transplants? Whose consent should be required for the use of fetal tissue for transplantation? We review the current state of clinical research with fetal tissue transplantation, the legal history of fetal tissue research, the major arguments against the use of fetal tissue for transplantation, and the new postmoratorium ethical dilemmas. We include recommendations for guidelines to govern the medical treatment of fetal tissue in transplantation.     

The quest for universality: reflections on the Universal Draft Declaration on Bioethics and Human Rights

This essay focuses on two underlying presumptions that impinge on the effort of UNESCO to engender universal agreement on a set of bioethical norms: the conception of universality that pervades much of the document, and its disregard of structural inequalities that significantly impact health. Drawing on other UN system documents and recent feminist bioethics scholarship, we argue that the formulation of universal principles should not rely solely on shared ethical values, as the draft document affirms, but also on differences in ethical values that obtain across cultures. UNESCO's earlier work on gender mainstreaming illustrates the necessity of thinking from multiple perspectives in generating universal norms. The declaration asserts the 'fundamental equality of all human beings in dignity and rights'(1) and insists that 'the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition'(2) yet it does not explicitly recognize disparities of power and wealth that deny equal dignity and rights to many. Without attention to structural (as opposed to merely accidental) inequities, UNESCO's invocation of rights is so abstract as to be incompatible with its avowed intention.     

Biobanking and deceased persons

Early biomedical research focused primarily on the study of specific diseases or sets of diseases within small groups of living research participants. Accordingly, the first ethical frameworks governing biomedical research addressed short-term, limited-scope research involving living research participants. Due to recent interest in longitudinal population studies and biobanking, research is increasingly long term. This shift raises several ethical and legal issues concerning the impact of a participant’s death on research. This paper offers an overview of these issues in the context of longitudinal biobanking genetic research. Our first part outlines the legal and ethical frameworks that govern the effect of the participants’ death on consent. This will be followed by an analysis of the legal and ethical frameworks that govern the secondary use of deceased participants’ data and samples and the return of deceased participants’ individual research results to biological family members. In our second part, we will review the current literature and discuss the above mentioned issues using the bioethics “principlism” theory before concluding.     

Ecoethics: Now Central to All Ethics

A few years ago, I wrote on the need for expansion of the environmental areas of bioethics, and covered some of the topics touched on here. Sadly, although it is possible to find some notable exceptions, bioethics does not provide much of an ethical base for considering human-nature relationships. Here I’m not going to deal with these philosophical issues or others about the nature of ethical decision-making. The rapid worsening of the human predicament means that applied ethical issues with a significant environmental connection (what I call “ecoethics”), must be dealt with without waiting for the more interesting theoretical issues to be resolved. I define ecoethics very broadly to deal with dilemmas over a vast range of scales, and believe they now should penetrate virtually all areas of human activities. Ecoethics must struggle with issues of intra-generational (and interperson/group/nation) equity and the dilemmas of discounting by distance (valuing distant persons/events/costs/benefits less than those closer to the observer in physical or mental distance). Ecoethics also deals with the difficult dilemma of inter-generational equity—of discounting the future. That is especially troublesome when actions today can have significant environmental consequences 50 or more generations from now. Here I would like to highlight the ubiquity of those questions and the importance of seeking answers.     

The bioethics of separating conjoined twins in plastic surgery

The incidence of craniopagus twins approximates four to six per 10 million births. Although rare, surgical separation of conjoined twins poses significant technical and ethical challenges. The present report uses the case of craniopagus twins AD and TD to examine the bioethical issues faced by a multidisciplinary medical team in planning the separation of craniopagus twins. AD and TD are craniopagus twins conjoined at the head. TD's head is conjoined to the back of AD's head. Neurologically, AD has the dominant cerebral circulation. TD has two normal kidneys, whereas AD has none. AD depends on TD's renal function and, on separation, will require either a kidney transplant or lifelong dialysis. This case report reviews one approach to analyzing and solving complex ethical dilemmas in pediatric plastic surgery. The principles reviewed are (1) autonomy and informed consent, focusing especially on the role of children in the informed consent process; (2) beneficence and nonmaleficence, two intricately intertwined principles because separation could potentially cause irreversible harm to one twin while improving the quality of life for the other (as separation is not a life-saving procedure, is it ethical to perform a procedure with unknown surgical risk to improve children's quality of life?); and (3) justice (is it fair to allocate excessive medical resources for the twins' separation?). The present report explores the ethics behind such decisions with respect to the separation of conjoined twins.     

Fostering critical thinking, reasoning, and argumentation skills through bioethics education

Developing a position on a socio-scientific issue and defending it using a well-reasoned justification involves complex cognitive skills that are challenging to both teach and assess. Our work centers on instructional strategies for fostering critical thinking skills in high school students using bioethical case studies, decision-making frameworks, and structured analysis tools to scaffold student argumentation. In this study, we examined the effects of our teacher professional development and curricular materials on the ability of high school students to analyze a bioethical case study and develop a strong position. We focused on student ability to identify an ethical question, consider stakeholders and their values, incorporate relevant scientific facts and content, address ethical principles, and consider the strengths and weaknesses of alternate solutions. 431 students and 12 teachers participated in a research study using teacher cohorts for comparison purposes. The first cohort received professional development and used the curriculum with their students; the second did not receive professional development until after their participation in the study and did not use the curriculum. In order to assess the acquisition of higher-order justification skills, students were asked to analyze a case study and develop a well-reasoned written position. We evaluated statements using a scoring rubric and found highly significant differences (p<0.001) between students exposed to the curriculum strategies and those who were not. Students also showed highly significant gains (p<0.001) in self-reported interest in science content, ability to analyze socio-scientific issues, awareness of ethical issues, ability to listen to and discuss viewpoints different from their own, and understanding of the relationship between science and society. Our results demonstrate that incorporating ethical dilemmas into the classroom is one strategy for increasing student motivation and engagement with science content, while promoting reasoning and justification skills that help prepare an informed citizenry.     

Intervention bioethics: a proposal for peripheral countries in a context of power and injustice

The bioethics of the so-called 'peripheral countries' must preferably be concerned with persistent situations, that is, with those problems that are still happening, but should not happen anymore in the 21st century. Resulting conflicts cannot be exclusively analysed based on ethical (or bioethical) theories derived from 'central countries.' The authors warn of the growing lack of political analysis of moral conflicts and of human indignation. The indiscriminate utilisation of the bioethics justification as a neutral methodological tool softens and even cancels out the seriousness of several problems, even those that might result in the most profound social distortions. The current study takes as a theoretical reference the fact that natural resources (which affect us all) are relevant. Based on these premises, and on the concept that equity means 'treating unevenly the unequal', a proposal of a hard bioethics (or intervention bioethics) is introduced, in defence of the historical insights and rights of economically and socially excluded populations that are separated from the international developmental process.     

What has bioethics to offer the developing countries

My paper consists of three parts. In the first part I try to explain the intellectual basis of bioethics in developing countries. In the second part I describe the bioethical dilemmas facing these countries. In the third part I shall discuss the changes that have to be made in bioethics if it is to take root in these countries, and thereby help them to improve the human existence.     

New Notes

All citizens will make bioethics decisions as a result of today's biotechnology revolution. The decisions made require citizens to find possible acceptable solutions to dilemmas that have become public issues. In this activity, students practice making decisions in ethical dilemmas after evaluating the influences of their own ethical beliefs and learning five ethical systems (relativism, divine command, utilitarianism, deontology, and virtue). They also learn systematic strategies that are useful for approaching any ethical dilemma. Alternatives and adaptations are provided or suggested to accommodate different maturity levels.     

Biological weapons, genetics and social analysis: emerging responses, emerging issues--I

Recent terrorist attacks in the USA have generated significant attention in many countries to the threats posed by biological weapons. In response to these events and the spectre of future attacks, bioscientists and professional organizations have begun or intensified asking questions about the possible malign applications of their research. As Part I of a two-part article, this paper surveys how genetics might contribute to the development of novel forms of weaponry. It is further argued that the dilemmas and difficulties facing bioscientists pose pressing and thorny questions for the hitherto agendas and orientations of those concerned with the social, ethical and political implications of genetics. Part II will examine the emerging responses initiated by biomedical organizations and spokespersons in the US and the UK. This will be done with a view to asking how scientific and medical research communities are defining and policing notions of professionalism, responsibility and accountability. On the basis of this, suggested lines for future social analysis will be offered.     

Solidarity and equity: new ethical frameworks for genetic databases

Genetic database initiatives have given rise to considerable debate about their potential harms and benefits. The question arises as to whether existing ethical frameworks are sufficient to mediate between the competing interests at stake. One approach is to strengthen mechanisms for obtaining informed consent and for protecting confidentiality. However, there is increasing interest in other ethical frameworks, involving solidarity--participation in research for the common good--and the sharing of the benefits of research.     

Informed Consent and Genetic Information

In the last 25 years writing in bioethics, particularly in medical ethics, has generally claimed that action is ethically acceptable only if it receives informed consent from those affected. However, informed consent provides only limited justification, and may provide even less as new information technologies are used to store and handle personal data, including personal genetic data. The central philosophical weakness of relying on informed consent procedures for ethical justification is that consent is a propositional attitude, so referentially opaque: consent is given to specific propositions describing limited aspects of a situation, and does not transfer even to closely related propositions. Assembling genetic data in databases creates additional difficulties for ethical justification. This is not because genetic information is intrinsically exceptional, but because the merger of genetic and information technologies make it possible to assemble massive quantities of complex information that defeat individuals' best efforts to grasp what is at stake, or to give or withhold informed consent. The future agenda for bioethics will need to take account of both these limitations of appeals to informed consent.     

Ethical and legal issues in xenotransplantation

In most western countries, there is a 'human organ shortage' with waiting lists for the performance of transplantation. In a recent report of the UNOS Ethics Committee it is stated that there are approximately 31,000 potential recipients on waiting lists, but only one fourth of potential donors gave their specific consent.
Xenotransplantation – defined as the transplantation of animal cells, tissues or organs into human beings – is associated with particular ethical dilemmas, namely the problems of efficiency and safety of this medical procedure. The objective of this study is to analyse the ethical dilemmas in xenotransplantation with the background of a personal view of moral life. Also, xenotransplantation will be evaluated as far as the legal regulation of transplantation is concerned. In particular, we will consider patients rights in accordance with existing laws on organ and tissue transplantation, animal research and clinical trials.     

Looking back, looking beyond: revisiting the ethics of genome generation

This paper will explore some of the ethical imperatives that have shaped strategic and policy frameworks for the use of new genetic technologies and how these play a role in shaping the nature of research and changing attitudes; with an attempt to conceptualize some theories of genetic determinism. I analyse why there is a need to put bioethical principles within a theoretical framework in the context of new technologies, and how, by doing so, their practical applications for agriculture, environment medicine and health care can be legitimized. There are several theories in favour of and against the use of genetic technologies that focus on genes and their role in our existence. In particular the theory of geneticisation is commonly debated. It highlights the conflicting interests of science, society and industry in harnessing genetic knowledge when the use of such knowledge could challenge ethical principles. Critics call it a ‘reductionist’ approach, based on arguments that are narrowed down to genes, often ignoring other factors including biological, social and moral ones. A parallel theory is that there is something special about genes, and it is this “genetic exceptionalism” that creates hopes and myths. Either way, the challenging task is to develop a common ground for understanding the importance of ethical sensitivities. As research agendas become more complex, ethical paradigms will need to be more influential. New principles are needed to answer the complexities of ethical issues as complex technologies develop. This paper reflects on global ethical principles and the tensions between ethical principles in legitimizing genetic technologies at the social and governance level.