perspective

Officers of The Center – 2015

field notes Is there room for not knowing “everything”? This fall, a recurrent theme at the meetings and conferences I attended was the benefit of learning as much as possible about one’s genome and the genomes of one’s children, including newborn babies. Genetic science is progressing fast, and scientists can now unravel and understand ever more about the tiny ways in which one person’s genome differs from another’s. This emerging data is useful, the argument goes, because (occasionally now but mainly in the promised near future) it can be used to tailor medical care, make more informed lifestyle choices, and chart a personalized education. From here, a related argument can be developed: that one ought to learn as much as possible about one’s genome and the genome of one’s children. Where once it was widely accepted that an individual has a right not to know some or all of the results of a genetic test, it is now argued that clinicians are obligated to return certain results to patients and even to research subjects. Where it was previously accepted that babies and children should be tested only for diseases and disorders that parents could medically address during childhood, some now argue that fully sequencing a baby’s genome is ethically justified in part because the information might benefit the parents, possibly tipping them off to important variants in their own genomes. Much discussed at a joint session of the American Society for Human Genetics and the American Society for Bioethics and Humanities were new surveys showing that when first asked how much information people would want back from a genetic test performed on themselves or their children, the majority say, “Everything.” I don’t know what your reaction is to the prospect of knowing “everything” about your and your child’s genome, but I keep wondering how well I could actually process all this information and whether much of it would, in fact, help me become a better and healthier person, or a better parent. I heard at these same meetings about the frequency of so called “variants of unknown significance”—genetic differences about which there is currently not enough information to say whether they are benign or (potentially) pathogenic, as well as variants currently considered pathogenic but around which a little digging reveals that the evidence is weak. Often people choose not to find out if their genome contains even some well-understood genes. I recall research done over the last decade or more showing that many individuals at risk for Huntington’s disease choose not to be tested for the gene; I think of geneticists who have their genomes sequenced but choose not to learn some results, like whether they carry genes associated with increased risk for Alzheimer’s. And I think about the minority in these new surveys—the 10 to 20 percent who say that they would want to know less than “everything.” In one conference presentation, it was observed that people in this minority were more likely to have had significant experience with medicine, leading the presenter to suppose that past experiences can “color” people’s response to the offer of more and more genetic data. I wondered if these outliers might in fact be the experts. Might people with experience of the limits and the burdens of genetic information be likely to want to pick and choose what they do and do not know? If so, I hope we are listening to them. —Josephine Johnston Research Scholar

David L. Roscoe

Chair Mildred Z. Solomon

President and Chief Executive Officer Harriet S. Rabb

Secretary Andrew S. Adelson

Treasurer

Safeguarding the Public’s Health: Ethical Nursing BY CYNDA HYLTON RUSHTON AND MARION E. BROOME

Board of Directors – 2014 Andrew S. Adelson Liza Bailey Daniel Callahan (ex officio) Edgar Cheng The World-Wide Investment Co., Ltd. Rebecca Dresser (ex officio) Washington University School of Law Joseph J. Fins (ex officio) Weill Cornell Medical College Alan R. Fleischman Albert Einstein College of Medicine Willard Gaylin (ex officio) Francis H. Geer St. Philip’s Church in the Highlands Thomas B. Hakes C/S Group Geoffrey R. Hoguet GRH Holdings, LLC Kim Kamdar Domain Associates Patricia Klingenstein Ilene Sackler Lefcourt Sackler Lefcourt Center for Child Development Robert Michels Weill Cornell Medical College Michele Moody-Adams Columbia College Gilbert S. Omenn University of Michigan Michael E. Patterson Richard Payne Duke Divinity School Harriet S. Rabb Rockefeller University Eve Hart Rice David L. Roscoe Michael Roth Wesleyan University Blair L. Sadler Institute for Healthcare Improvement Mildred Z. Solomon (ex officio) Francis H. Trainer, Jr.

E

thical issues in nursing are not new—ask any practic- beleaguered. Patients and families are concerned about acing nurse what keeps him or her up at night. The cess to quality, safe, and affordable health care; they are list is populated with concerns such as balancing deeply dissatisfied with the relational care they receive. the benefits and burdens of unbridled technology, align- Nurses and other clinicians are disillusioned about their ing quality and safety with efficiency and cost reduction, ability to uphold their core professional values in a costprotecting privacy, and providing dignified care at the end constrained, efficiency-oriented environment that denies of life. Many nurses, when asked, share examples of their their humanity. Shortages of all types of clinicians are fueled courageous advocacy and highlight situations where they by the burgeoning prevalence of burnout, moral distress, were called on to employ exquisite ethical reasoning skills, and cynicism. Systems are pressured to align competing skillful communication, and respectful collaboration. Un- goals to increase access to more Americans, improve quality fortunately, too many others share their despair and pow- and safety, and constrain costs. Health care administrators, erlessness after repeated experiences of moral distress while policy-makers, and regulators are challenged to balance ecocaring for patients and their families in nomic interests with their ethical comsystems where their voices are silenced mitments to patients, families, clinical n or disregarded. staffs, and governing boards. With the landmark 2010 Future of An antidote to this reality is a new Nursing report by the Institute of Medparadigm for health care that is susicine largely silent about the ethical tained by strengthening a culture of n foundation of nursing and with growethical practice. Cultural change takes ing concerns about the prominence of time, vision, leadership, and courage. ethical issues that arise for individuals across all roles within The summit’s participants call on all nursing and health care nursing, it is clearly time for the profession to pause and leaders to intentionally shift their attention from a primary consider its ethical foundations anew. In August 2014, fifty focus on the business aspects of health care, which too often nursing leaders participated in the national summit Nurs- undermines personalized care that patients and families exing Ethics for the 21st Century, sponsored by The Johns pect and need, and to pledge to act on the vision for a more Hopkins University School of Nursing and Berman Insti- ethical practice of nursing. Frequently, values are touted but tute of Bioethics. Together, we and our colleagues identified not embodied in daily organizational decision-making. A priorities and created a blueprint for the future with goals to healthy bottom line requires alignment of the foundational develop and sustain work environments that support ethi- values of the health professions, especially nursing, with the cal nursing practice; to promote excellence in nursing ethics priorities of the broader health care enterprise. This will education; to create a research agenda that will lead to a cul- mean more point-of-care providers are supported to voice ture of ethical practice in diverse care settings; and to foster their concerns and provide constructive solutions within an ethical environment by developing resources, policies, systems designed to provide high-quality, safe, and efficient metrics (outcomes), education, training, and research (see care. Too often, these professionals are talked to rather than http://www.bioethicsinstitute.org/nursing-ethics-summit- with. Within a culture that supports people to do the right report). As conveners of this summit, we focus on one of thing for the right reason, integrity can be restored and rethe most complex, salient, and difficult domains: the de- silience cultivated; patients and families will experience care velopment and sustainability of a health care culture that that is respectful, fair, and compassionate. supports ethical nursing practice. Health care is at a critical tipping point. We must not What will it take to create a culture of ethical practice? continue to promulgate the current culture, one that threatThe context of U.S. health care is complex, dynamic, and ens the well-being and integrity of those who are called to care by silencing them. We must all commit to participating in designing and sustaining a culture that makes ethical Cynda Hylton Rushton is professor of clinical ethics and nursing at practice normative rather than a heroic act. Johns Hopkins University; Marion E. Broome is dean for Nursing Af-

Cultural change

fairs at Duke University School of Nursing. DOI: 10.1002/hast.410

Is there room for not knowing "everything"?

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