Report
The Hastings Center
FROM THE EDITOR
VOLUME 45, NO. 4 • JULY-AUGUST 2015
Whose Risks and Benefits?
T
his issue of the Report, like many others, was assembled with an eye more to diversity of topics and themes than to commonality. But as also often happens, some topics and themes arise anyway. Two pieces in this issue discuss the disclosure of information that’s uncovered in the course of genetic testing and try to develop some guidance for physicians and researchers. A third offers an historical look at changing practices. The lead article, by three authors associated with the National Institutes of Health Center for Bioethics, considers what genetic researchers should do when they discover incidentally, in the course of research that involves genomic sequencing, that two people who have been considered parent and child are not genetically related to each other. That information can be helpful but can also be very harmful, throwing families into turmoil and upending a person’s sense of identity. Because researchers’ duty to avoid harming their subjects is greater than their duty to benefit them, the default position for researchers should be against disclosure. The authors allow, though, that researchers might in some cases, based on knowledge of details about a given case, make judgment calls to disclose that information. Erik Parens, a scholar at The Hastings Center, considers some related issues in one of the essays. In many medical domains and especially in pediatrics, he argues, the default approach tends to lean the other way—in favor of looking for and sharing genetic information. The assumption tends to be that knowledge is good. But Parens does not look for solutions through a careful weighing of benefit and harm, as do the authors of the lead article. He instead argues that what makes something a benefit or harm is a deeply personal matter and that we show respect to people by allowing them to decide for themselves whether they want a piece of information. Parens worries that medicine is turning away from informed consent, toward making independent decisions about patients’ welfare. The second article in this issue takes a close look at a fairly little-discussed episode in the history of medicine in the United States. Matthew Gambino examines a policy at St. Elizabeths Hospital, a large federal psychiatric facility in Washington, D.C., to inoculate some patients with malaria so that they would be malaria reservoirs for use in the treatment of other patients suffering from an advanced form of syphilis. In the early to mid-twentieth century, it was thought that syphilis could be treated by inoculating the syphilitic patient with malaria, thereby inducing a high fever that would kill the bacteria that causes syphilis. To be able to inoculate patients on demand, however, the medical staff needed somebody around who harbored malaria. Often, particularly vulnerable patients were chosen for that role. The practice is horrific, from today’s perspective, but it is an important window into medicine’s evolving understanding of how risks and benefits are to be weighed. —GEKn
Gregory E. Kaebnick Editor Laura Haupt Managing Editor Susan Gilbert Stephen R. Latham Contributing Editors Nora Porter Art Director Nancy Berlinger Michael K. Gusmano Erik Parens Editorial Committee The Hastings Center Report (ISSN 0093-0334 print; ISSN 1552-146X online) is published bimonthly on behalf of The Hastings Center by Wiley Subscription Services, Inc., a Wiley Company, 111 River St., Hoboken, NJ 07030-5774. The Hastings Center, an independent, nonpartisan, nonprofit organization, addresses fundamental ethical issues in the areas of health, medicine, and the environment as they affect individuals, communities, and societies. For more information on the Center’s interdisciplinary research and education programs, visit its website at www.thehastingscenter.org. The Hastings Center Report is sent to individual and institutional subscribers. For ordering information, claims, and any inquiry concerning your journal subscription, please go to http:// www.wileycustomerhelp.com/ask or contact your nearest office. Americas: [email protected] or 1-800-8356770. Europe, Middle East, and Africa: [email protected]; +44 (0)-1865778315. Asia Pacific: cs-journals@wiley. com or +65-6511-8000. Periodicals postage paid at Hoboken, NJ, and additional mailing offices. postmaster: Send all address changes to the Hastings Center Report, Journal Customer Services, John Wiley and Sons, Inc., c/o The Sheridan Press, PO Box 465, Hanover, PA 17331. Contents copyright © 2015 by The Hastings Center. All rights reserved.
2 HASTIN G S C E N T E R R E P ORT
July-August 2015
The Hastings Center
FROM THE EDITOR
VOLUME 45, NO. 4 • JULY-AUGUST 2015
Whose Risks and Benefits?
T
his issue of the Report, like many others, was assembled with an eye more to diversity of topics and themes than to commonality. But as also often happens, some topics and themes arise anyway. Two pieces in this issue discuss the disclosure of information that’s uncovered in the course of genetic testing and try to develop some guidance for physicians and researchers. A third offers an historical look at changing practices. The lead article, by three authors associated with the National Institutes of Health Center for Bioethics, considers what genetic researchers should do when they discover incidentally, in the course of research that involves genomic sequencing, that two people who have been considered parent and child are not genetically related to each other. That information can be helpful but can also be very harmful, throwing families into turmoil and upending a person’s sense of identity. Because researchers’ duty to avoid harming their subjects is greater than their duty to benefit them, the default position for researchers should be against disclosure. The authors allow, though, that researchers might in some cases, based on knowledge of details about a given case, make judgment calls to disclose that information. Erik Parens, a scholar at The Hastings Center, considers some related issues in one of the essays. In many medical domains and especially in pediatrics, he argues, the default approach tends to lean the other way—in favor of looking for and sharing genetic information. The assumption tends to be that knowledge is good. But Parens does not look for solutions through a careful weighing of benefit and harm, as do the authors of the lead article. He instead argues that what makes something a benefit or harm is a deeply personal matter and that we show respect to people by allowing them to decide for themselves whether they want a piece of information. Parens worries that medicine is turning away from informed consent, toward making independent decisions about patients’ welfare. The second article in this issue takes a close look at a fairly little-discussed episode in the history of medicine in the United States. Matthew Gambino examines a policy at St. Elizabeths Hospital, a large federal psychiatric facility in Washington, D.C., to inoculate some patients with malaria so that they would be malaria reservoirs for use in the treatment of other patients suffering from an advanced form of syphilis. In the early to mid-twentieth century, it was thought that syphilis could be treated by inoculating the syphilitic patient with malaria, thereby inducing a high fever that would kill the bacteria that causes syphilis. To be able to inoculate patients on demand, however, the medical staff needed somebody around who harbored malaria. Often, particularly vulnerable patients were chosen for that role. The practice is horrific, from today’s perspective, but it is an important window into medicine’s evolving understanding of how risks and benefits are to be weighed. —GEKn
Gregory E. Kaebnick Editor Laura Haupt Managing Editor Susan Gilbert Stephen R. Latham Contributing Editors Nora Porter Art Director Nancy Berlinger Michael K. Gusmano Erik Parens Editorial Committee The Hastings Center Report (ISSN 0093-0334 print; ISSN 1552-146X online) is published bimonthly on behalf of The Hastings Center by Wiley Subscription Services, Inc., a Wiley Company, 111 River St., Hoboken, NJ 07030-5774. The Hastings Center, an independent, nonpartisan, nonprofit organization, addresses fundamental ethical issues in the areas of health, medicine, and the environment as they affect individuals, communities, and societies. For more information on the Center’s interdisciplinary research and education programs, visit its website at www.thehastingscenter.org. The Hastings Center Report is sent to individual and institutional subscribers. For ordering information, claims, and any inquiry concerning your journal subscription, please go to http:// www.wileycustomerhelp.com/ask or contact your nearest office. Americas: [email protected] or 1-800-8356770. Europe, Middle East, and Africa: [email protected]; +44 (0)-1865778315. Asia Pacific: cs-journals@wiley. com or +65-6511-8000. Periodicals postage paid at Hoboken, NJ, and additional mailing offices. postmaster: Send all address changes to the Hastings Center Report, Journal Customer Services, John Wiley and Sons, Inc., c/o The Sheridan Press, PO Box 465, Hanover, PA 17331. Contents copyright © 2015 by The Hastings Center. All rights reserved.
2 HASTIN G S C E N T E R R E P ORT
July-August 2015
