When Should Genome Researchers Disclose Misattributed Parentage?
Amulya Mandava, Joseph Millum, and Benjamin E. Berkman
As genome sequencing improves, researchers will increasingly use it on parents and their children when the children have rare or undiagnosed diseases that might be genetic. However, researchers are sure to discover that, in a growing number of cases, the assumed biological relationships between the individuals do not exist. Consequently, the researchers will have to decide whether to disclose incidental findings of misattributed parentage on a much larger scale than ever before. After evaluating the likely benefits and harms of revealing this information to parents, the authors conclude that nondisclosure should be the default position for researchers. Amulya Mandava is a masters of arts candidate at Harvard Divinity School; Joseph Millum holds a joint faculty appointment with the Clinical Center Department of Bioethics and the Fogarty International Center at the National Institutes of Health; and Benjamin E. Berkman holds a joint appointment in the National Institutes of Health Department of Bioethics and in the National Human Genome Research Institute. A related article, Beyond Harms and Benefits: Rethinking Duties to Disclose Misattributed Parentage, argues that when deciding whether to disclose incidental findings that relate fundamentally to participants' sense of self and personal identity, researchers need to factor in the values of justice and autonomy. The author is Jeremy R. Garrett, a research associate in bioethics at the Children's Mercy Bioethics Center at Children's Mercy Hospital in Kansas City, Mo.
Punishing Health Care Providers for Treating Terrorists
Leonard S. Rubenstein
Imagine that an American physician volunteered to treat wounded children through the Ministry of Health in Gaza, controlled by Hamas. Or that a Palestinian nurse attending to injured fighters in Gaza spoke out against the firing of rockets into Israel, was threatened with arrest, and sought asylum in the United States. Under U.S. law, the doctor could be subject to prosecution, and the nurse could be denied asylum. The question of whether a terrorist is entitled to medical care, though largely theoretical, has generated considerable discussion, with near unanimity that there is no moral basis to refuse to treat, writes Leonard S. Rubenstein, director of the Program on Human Rights, Health and Conflicts at the Center for Public Health and Human Rights at the Johns Hopkins Bloomberg School of Public Health and a core faculty member of the Johns Hopkins Berman Institute of Bioethics. But whether a health professional can be punished for providing medical care either to terrorists or under the auspices of a terrorist organization has received little attention from either a moral or legal perspective, although such situations arise throughout the world.
As the price of genome sequencing falls, the prospect of tailoring medical care to an individual's genome becomes closer to reality. But in our excitement about the technological capacity to gather genomic data at an ever-lower cost, we are drifting away from what has long been a basic ethical commitment: enabling people to provide informed consent before anyone accesses their genetic information. In our pursuit of personalized, or precision, medicine, we must take care not to abandon respect for persons, writes Erik Parens, a senior research scholar at The Hastings Center.
Also in this issue:
Policy & Politics: Candor about Adverse Events: Physicians versus the Data Bank
Many major medical institutions have embraced the idea that it is best to be honest with patients and families when an error causes harm that could have been avoided. This kind of disclosure improves patient safety and quality of care; enhances satisfaction for patients, families, and providers; and reduces malpractice litigation costs. A few states have also embraced this approach, sometimes known as "Candor" (for "communication and optimal resolution"). Yet all of these efforts face a major challenge. Although many physicians would like to achieve insight, reconciliation, and quality improvement in just this way, many fear that money paid to resolve an incident in which they were involved can result in a lifelong black mark in the National Practitioner Data Bank.