One of bioethics' most singular strengths is fostering debates on human conundrums, not those relegated to dusty archives, but those forming the moving, developing present. Bioethics is future looking, not quite crystal ball gazing but struggling to ascertain what the consequences of our choices and actions will be. And, although the methodology is still to be fully articulated (see CQ Vol. 16, No. 4, Fall 2007 “An Ethical Competition: The Method in Bioethics Research”) a challenge is to navigate intellectual errors such as a Manichaean oversimplification of seeing things in black and white or falling prey to moral relativism where we are blind to blurred distinctions.
In our annual “Open Forum” issue we present papers for their provocative qualities—ones intended to stimulate discussion on the future we are, even at this moment, shaping. We invite readers to respond and continue the discussions initiated here.
Our first paper, “Embryonic Stem Cell–Derived Gametes and Genetic Parenthood: A Problematic Relationship,” looks at a problem of definition: what counts as parenthood in rapidly developing reproductive science? By reviewing and analyzing a number of existing and hypothetical reproductive possibilities, the authors define a core notion of genetic parenthood and the implications for embryonic-stem-cell-derived gametes.
Next, we move to questions of guidelines and policies. In their paper “Do Ethical Guidelines Give Guidance?” Stefan Eriksson, Anna T. Höglund, and Gert Helgesson question the generally accepted assumption that laws and ethical guidelines are useful. They examine eight guidelines and conclude that users looking for ethical guidance run into three serious problems: the interpretation problem, the multiplicity problem, and the legislation problem, showing that regulations do not, by themselves, suffice in facilitating ethical behavior—thus, calling for a new approach to ethical guidelines.
Michael Boylan, in “Medical Pharmaceuticals and Distributive Justice,” examines certain key features of theories of distributive justice to fashion a combination that will fit with healthcare's cooperative mission. In the process, a new model for the medical pharmaceutical industry is suggested that advocates incentives for the creation of two new models for pharmaceutical companies that would have profound effects in controlling costs as well as assisting in the areas of research and development, patents, and offering drugs to the developing world.
Distributive justice is also the subject of Colin Farrelly's “Genetic Justice Must Track Genetic Complexity.” Farrelly raises the question that must be addressed if we are to institute just regulations in a postgenetic revolutionary society: “In a society that possesses the ability to directly intervene in the natural lottery of life, what will be the demands of distributive justice?” He proposes that answering these questions requires an account of genetic justice that tracks and takes genetic complexity seriously. He further posits that “pluralistic prioritarianism,” a position that maintains that it is morally more important to benefit the people who are worse off—in this case the genetically least advantaged—is a theoretical position well suited for tracking genetic complexity and will point toward helping us make explicit reasons why we should consider a certain range of policy prescriptions rather than a different range of policies.
Clinical decisionmaking is the issue in Rosamond Rhodes and James J. Strain's paper “Affective Forecasting and Its Implications for Medical Ethics.” The authors point out that psychological tests demonstrate our vulnerability to the distortions of “affective forecasting” in that our attempts to predict our own future responses to a particular event are often off target. They argue these findings pose clear ethical implications for medicine in that patients, families, clinicians, and policy makers are all susceptible to the distorting effects on judgment that can be wrought by affective forecasting and must be taken into account in our ethical analyses if we are to avoid the danger of crossing significant moral boundaries.
Continuing the clinical theme, in “Informed Consent: Good Medicine, Dangerous Side Effects” Bruce N. Waller and Robyn A. Repko caution that, in order for the informed consent process to be both ethically sound and therapeutically beneficial, medical professionals must consider the relevant psychological characteristics of patients—including coping style, locus of control, and degree of self-efficacy—and tailor the informed consent process to the individual patient. They offer that necessary psychological assessment tools are now available for advancing the informed consent process into a stage of individual therapy informed consent, which will avoid risks from generic informed consent practices and make informed consent a reliably beneficial element of optimum therapy.
The final two papers examine questions surrounding death: misrepresentation inherent in an influential report's determination of death and the importance of devising research guidelines based on what is owed deceased subjects and their families.
Alister Browne argues in “The Institute of Medicine on Non-Heart-Beating Organ Transplantation” that, in the understandable aim of trying to close the gap between the supply and demand of transplantable organs, the reach of the Institute of Medicine has “exceeded its moral grasp.” It is his contention that those who become non-heart-beating organ donors on the premise that their organs will be taken only after they are dead get something different from what they or their families bargained for.
Mark R. Wicclair's paper, “Ethics and Research with Deceased Patients,” points out that although ethical guidelines for research on living human subjects is firmly established, corresponding requirements in relation to the dead need to be similarly recognized. The author maintains that a fundamental ethical concept in relation to research with the dead is “respect” both toward deceased patients and their families. He identifies the requirements of respectful research, unpacking what that would mean as well as pointing out additional ethical guidelines.
As these papers demonstrate, our field is one of rapidly expanding questions that are always complex, confounding at times, plagued by uncertainty—but never boring.
People signing or gesturing to each other, 14th century. Twelve scenes possibly representing doctors and patients. British Library, London, Great Britain. Photo credit: HIP/Art Resource, New York. Reproduced by permission.
