P U B L I C H E A L T H 1 2 8 ( 2 0 1 4 ) 5 7 9 —5 8 I

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Short Communication

My moral compass and ethical decision making in public health L.M.

CrossMark

Lee*

Presidential Commission for the Study of Bioethical Issues, Washington DC, USA

A R T I C L E

I NFO

Article history; Received 15 October 2013 Received in revised form 1 April 2014 Accepted 2 April 2014 Available online 12 June 2014

For years I have taught public health students and practitioners in traditional and non-traditional settings about public health ethics. In every group, w hether participants in a noon-tim e sem inar or a full sem ester required 3-credit course, there ex­ ists a handful of doubters. W hy would they need to be there, being trained on ethics? They are, after all, public health pro­ fessionals—believers in social justice, practitioners of a hum ble and noble profession w ho have forgone high-paying salaries in big pharm a, corporate medicine, or for-profit research. They are ethical. W hen ethical dilem m as creep in, they know w h at to do; they are in touch w ith their m oral com pass. And, in all m y years in public health, I do not doubt th a t it is a field filled w ith in ­ dividuals w hose intention is to do the right thing. If w e have learned one thing in the course of th e develop­ m e n t of th e field of public health ethics over the p ast quarter century, it is th a t m y m oral com pass m ight n o t be in com plete agreem ent w ith m y colleague’s; m y true north m ight not point to his true north. Reasonable people disagree. W hile we m ight n o t be so far from each other on w h at w e think the right thing is to do, th e distance m ight be of vital im port. How, then, do w e get to an ethical decision about w h at to do next? Simply stated (albeit less sim ply im plem ented), we tu rn from a m oral com pass to a process of ethical decision making.

Ethical decision m aking is a process by w hich questions w ith less th a n clear ethical solutions are posed before an established fram ew ork steeped in a com m on set of principles th a t guide th e decision m akers through evidence, ethical considerations, and scenario shifts to arrive at one of several possible p ath s forward. Often th e chosen p ath is n ot w h at each individual’s m oral com pass w ould dictate, rather, given th a t each person has agreed w ith th e com m on set of ethical prin­ ciples guiding th e ethical framework, th e resulting decision path is one (perhaps of several) th a t follows from system atic ethical evaluation. It is th e achievem ent of this resu lt th a t places ethical decision m aking far beyond th a t of even the m ost virtuous person’s m oral com pass. In addition to th e value of incorporating system atic ethical evaluation into th e everyday practice of public h ealth pro­ fessionals, there are at least th ree additional com pelling ar­ gum ents in favour of relinquishing our personal m oral com pass for a m ore robust decision m aking fram ew ork in public health. In public h ealth w e m u st account for 1) the prim acy of transparency in deliberating th e ethical contours of public h ealth policy decisions; 2) the ex tan t pluralism in the affected com m unity and th e population as a whole; and 3) th e fact th a t com m unities and populations, n o t solely individual patients, are th e focus of th e ethical duty in our practice. Each of th ese considerations is addressed below.

Transparency Public h ealth professionals have always faced ethical de­ cisions in th eir daily work. Some are m ore challenging th an others and all require tran sp aren t decision making. In a 2003 survey, U.S. public h ealth officers reported facing num erous

* U.S. Presidential Commission for the Study of Bioethical Issues, 1425 New York Ave., NW Suite C-100, Washington DC, 20005, USA. Tel.: +1 202 233 3960; fax: +1 202 233 3990. E-mail address: [email protected]. http://dx.doi.Org/10.1016/j.puhe.2014.04.001 0033-3506/Published by Elsevier Ltd on behalf of The Royal Society for Public Health.

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ethical challenges, such as acquisition and allocation of scarce resources, including setting spending priorities and choosing among many groups in need; collection and use of data; and managing politics and relationships with government officials and legislators, who make funding decisions about public health departm ents.1 When surveyed in 2009, public health officials reported similar ethical dilemmas, including resource allocation and negotiating political interference; and added concerns about the expanding scope of public health and the appropriate use of public health authority.2 These types of ethical decisions share qualities that make them the types of decisions less well-suited for relying solely on one’s own moral compass and better for a decision making framework with a transparent, deliberative process.3 They tend to be contentious and controversial; they often need both scientific data as well as a practical application for a solution; their resolution can raise suspicion or cause lack of trust in gov­ ernment; and they all deal with the public’s good.3 Participation and deliberation, in the context of ethical de­ cision making with a framework of mutually valued and important principles, functions as a tool for improved out­ comes, legitimized decisions, accountability, and buy-in on decisions even when the outcome is not w hat individual par­ ticipants would have desired. These outcomes stem from trust in a transparent process and agreement with underlying prin­ ciples. Gutmann and Thompson describe democratic deliber­ ation as a powerful tool for decision making in bioethics and in the political process between citizens and their elected offi­ cials.4,5 The parallels to public health are clear—often public health officials are elected or appointed and much of their work is related to developing policies and regulations that impact health and community well-being. Democratic deliberation achieves four important purposes, including promoting the legitimacy of collective decisions, promoting a shared public perspective on public issues, modelling respectful decision making, and offering a more complete understanding of the multiple facets of the complex issues.4,5 Importantly, the op­ portunity to participate in the deliberative process yields improved satisfaction with the outcome, even when the deci­ sion is counter to one’s own desires6—trusting a transparent process is powerful.

Pluralism Over the past 25 years, public health ethicists have offered over a dozen frameworks to help organize and frame guiding prin­ ciples for decision making.7 All of these frameworks offer a set of foundational values with which parties using it agree are valued and important. These foundational values, often stated as principles, attempt to reflect the pluralistic values of com­ munities. A set of core beliefs and values articulated for public health in the United States were produced through an engage­ ment process by the Public Health Leadership Society in the early 2000s.8 The values enumerated in this process included a fundamental hum an right to health and the obligation to pro­ mote the requirements for health in a community; interde­ pendency between individuals and their various communities and environment; importance of collaboration and participa­ tion of affected communities as a signal and expression of trust;

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and recognition of the necessary, but insufficient nature of knowledge as the basis of action in the quest for health.8 These values drive the ethical practice of public health and many of the ethical decision making frameworks are based on similar conceptions of valued beliefs. Different stakeholders might have different opinions on the weight of each of these values for a given ethical decision at a given time or given the current state of scientific evidence, and these are the issues that are delib­ erated. It is the use of such a framework, with mutually agreed upon values and principles, that allows public health practi­ tioners to move from applying their personal moral compass toward an ethical decision making framework that considers the plurality of the community and allows application of a transparent, defensible process. Controversy and competing ethical considerations were evident in 2005 when the New York City health department initiated mandatory public health reporting of haemoglobin Ale, an indicator of glycemic control in persons with diabetes. Faced with rising type 2 diabetes prevalence and city-wide racial and economic disparities in related sequelae, the city sought to improve data to reduce health inequity and support patient care through use of the surveillance registry.9 Several ethical tensions emerged— the balance of privacy and the obligation to act on a public health epidemic; the lack of evi­ dence that the registry and supporting interventions reduced prevalence and disparities in order to support the infringement on liberty; and physicians’ concerns about interference with patient/provider relationship. The health department made efforts to listen to many perspectives, especially patient and privacy advocates; however physicians, an important stake­ holder group, reportedly felt alienated from the process.10 While many of the ethical debates about the Ale program took place following its implementation in the peer-reviewed literature,9 many public health professionals in the practice world, especially in public health surveillance, discussed the ethical contours of this case around the proverbial water cooler. Stakeholder engagement as a tool to address pluralism cannot be underestimated. Nearly half of the public health ethics frameworks include operating principles—actions or expectations for implementation of the framework—that specifically outline inclusiveness, participation, transparency, or similar terms to indicate the expectation that decisions made using the particular framework are designed to be in­ clusive and deliberated.7 This participatory decision making might occur, depending on the nature and divisiveness of the topic, via a community member serving on a public health departm ent’s ethics board, or through public meetings where affected communities are directly engaged in discussion and deliberation. In the U.S. State of Louisiana, for example, the Office of Public Health engaged the affected community in a year-long ethical analysis when proposing an unprecedented and controversial use of HIV surveillance data that would help bring HIV-infected persons back into clinical care.11,12

Focus on community In the clinical context, the duty is owed squarely to the indi­ vidual patient and decisions about what is best requires careful consideration of her needs, desires, and values;

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decisions require clarification of the p atient’s (and som etim es th e healthcare provider’s) m oral com pass. W hether a w om an should undergo genetic testing before attem pting to conceive, for example, requires consideration of th a t w om an’s (or cou­ ple’s) needs. In contrast, in the public health context, the ‘p a ­ tie n t’ is th e com m unity and th e duty is no longer only to the individual b u t also to the larger com m unity. This com m unity focus requires consideration of th e com m unity’s perspectives. For example, considering w hether to add large scale genetic testing to public health screening for all new borns requires m ore th an w hether one paren t thinks it is good for h er child. Rather, w e m u st allow all m orally relevant views to be heard, including those w ho feel strongly about the right not to know about potential future disease states even if intervening could prevent them , as well as views about cost effectiveness and prioritization o f lim ited public health resources. W hen dealing w ith a public good, m oral governance shifts from the individ­ ual to th e collective and ethical decision m aking is based on com m on values, articulated as principles, th a t engages all affected parties. One strength of this process is its reliance on a collective framework, not a personal m oral com pass—even if the outcom e w ould have been identical. Tough ethical decisions are a p art of daily life for public h ealth practitioners. Most practitioners stay anchored by the true n o rth of their ow n m oral com pass and are com fortable m aking decisions based on it. However, faced w ith decisions involving the public good, our duty to the individual shifts to include th a t of the collective, and w e m ove to an ethical de­ cision m aking fram ew ork allowing for tran sp a ren t delibera­ tion w here the issues dem and it. We m u st continue to equip public h ealth practitioners w ith th e skills to address the difficult ethical decisions th a t m ove beyond the realm of the personal m oral com pass. Note: th e views expressed here are those of th e author and do n o t necessarily represent the official position of th e U.S. Presidential Com mission for the Study of Bioethical Issues or th e U.S. D epartm ent of H ealth and H um an Services.

Author statements Ethical approval No h u m a n participants w ere p art of this report thus ethical review board approval w as unnecessary.

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Funding None declared.

Competing interests Lisa M Lee has no conflicts of in terest or financial disclosures.

REFERENCES

1. Bernheim RG. Public health ethics: the voices of practitioners. J Law Med Ethics 2003;31(4 Suppl.):104-9. 2. Baum NM, Gollust SE, Goold SD, Jacobson PD. Ethical issues in public health practice in Michigan. Am J Public Health 2009;99(2):369—74. 3. Solomon S, Abelson J. Why and when should we use public deliberation? Hastings Cent Rep 2012;42(2):17—20. 4. Gutmann A, Thompson D. Deliberating about bioethics. Hastings Cent Rep 1997;27(3):38-41. 5. Gutmann A, Thompson D. Why deliberative democracy? Princeton NJ: Princeton University Press; 2004. 6. Kim SYH, Uhlmann RA, Appelbaum PS, Knopman DS, Kim HM, Damschroder L, Beattie E, Struble L, De Vries R. Deliberative assessm ent of surrogate consent in dementia research. Alzheimers Dement 2010;6:342-50. 7. Lee LM. Public health ethics theory: review and path to convergence. J Law Med Ethics 2012;40(l):85-98. 8. Public Health Leadership Society. Principles of the ethical practice o/public health. Version 2.2:2—3, http://www.apha.org/ NR/rdonlyres/lCED3CEA-287E-4185-9CBD-BD405FC60856/0/ ethicsbrochure.pdf; 2002. 9. Chamany S, Silver LD, Bassett MT, Driver CR, Berger DK, Neuhaus CE, Kumar N, Frieden TR. Tracking diabetes: New York City’s A1C registry. Millbanfe Q 2009;87(3):547—70. 10. Goldman J, Kinnear S, Chung J, Rothman DJ. New York City’s initiatives on diabetes and HIV/AIDS: implications for patient care, public health, and medical professionalism. Am J Public Health 2008;98(5):807-13. 11. Herwehe J, Wilbright W, Abrams A, Bergson S, Foxhood J, Kaiser M, Smith L, Xiao K, Zapata A, Magnus M. Implementation of an innovative, integrated electronic medical record (EMR) and public health information exchange for HIV/AIDS. J Am Med Inform Assoc 2011;19(3):448-52. http://dx.doi.org/10.1136/amiajnl-2011000412. 12. Louisiana Office of Public Health. Louisiana public health information exchange: an overview. Available at: http://www. lsms.org/site/images/stories/LaPhie-Non-techincal%20Guide. pdf; 2012 (accessed 5 October 2013).

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