Publications
Is There a Place for Benevolent Deception?
In ‘Ethical jurisdictions in bioethical research’, J.M. Mfutso-Bengu and T. Taylor describe a conflict between a host ethics committee in Malawi and a remote ethical committee in USA, concerning the wording of a consent form. The study in question involved the removal of the eyes of children who had died of malaria in order to … Read more
Anti-Aging Medicine
The use of interventions claiming to prevent, retard, or reverse aging is proliferating. Some of these interventions can seriously harm older persons and aging baby boomers who consume them. Others that are merely ineffective may divert patients from participating in beneficial regimens and also cause them economic harm. “Free market regulation” does not seem to … Read more
Uncertain Benefit
We report on a study of potential sources of therapeutic misconception in early phase gene transfer research, examining how investigators and their consent forms represent the prospect for direct benefit. Our analysis demonstrates that even though half of PIs said they expected direct medical benefit for their subjects, they did not necessarily convey this to … Read more
Assessing Adolescents With Insulin-Dependent Diabetes Mellitus
This study explored the illness experiences of adolescents with insulin-dependent diabetes mellitus (IDDM) using Video Intervention/Prevention Assessment (VIA). Five adolescents with IDDM were asked to videotape 8 hours of their lives over a 1-month period. At the conclusion of the study, the primary investigator interviewed each adolescent and their diabetes clinician. VIA visual illness narratives … Read more
The Ethics of Embryonic Stem Cells
The promise and potential of human embryonic stem cell research evoke profound clinical enthusiasm1- 3; the embryonic human origins of such cells warrants an equally profound ethical concern. The ethical issues are not primarily matters of scientific fact nor of political belief. Consequently, these issues cannot adequately be addressed simply by reference to the biology of … Read more
What Community Review Can and Cannot Do (Commentary)
The author praises Sharp and Foster’s differentiation of the forms of “community review,” and agrees that the discussion is far from settled. He argues that rather than attempting to define “community” by various criteria, it might be more helpful to both researchers and research subjects to enable persons to create their own communities: a process … Read more
Caught in the Middle Again
Genotyping tests for molecular mutations associated with clinical syndromes increasingly allow clinicians to identify health risks before clinical problems occur, sometimes making prevention possible. The clinical use of these tests, however, can create moral problems for families and serious health policy challenges for communities. Those issues, in turn, complicate the professional ethics of genetic testing … Read more
Self-Critical Federal Science? The Ethics Experiment Within the US Human Genome Project
On October 1, 1988, thirty-five years after co-discovering the structure of the DNA molecule, Dr. James Watson launched an unprecedented experiment in American science policy. In response to a reporter’s question at a press conference, he unilaterally set aside 3 to 5 percent of the budget of the newly launched Human Genome Project to support … Read more