Case Studies and Practice

Integrating Public Health and Deliberative Public Bioethics: Lessons from the Human Genome Project Ethical, Legal, and Social Implications Program Karen M. Meagher, PhDa Lisa M. Lee, PhD, MA, MSa

ABSTRACT Public health policy works best when grounded in firm public health standards of evidence and widely shared social values. In this article, we argue for incorporating a specific method of ethical deliberation—deliberative public bioethics—into public health. We describe how deliberative public bioethics is a method of engagement that can be helpful in public health. Although medical, research, and public health ethics can be considered some of what bioethics addresses, deliberative public bioethics offers both a how and where. Using the Human Genome Project Ethical, Legal, and Social Implications program as an example of effective incorporation of deliberative processes to integrate ethics into public health policy, we examine how deliberative public bioethics can integrate both public health and bioethics perspectives into three areas of public health practice: research, education, and health policy. We then offer recommendations for future collaborations that integrate deliberative methods into public health policy and practice.

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

a

Address correspondence to: Lisa M. Lee, PhD, MA, MS, Presidential Commission for the Study of Bioethical Issues, 1425 New York Ave. NW, Ste. C-100, Washington, DC 20005; tel. 202-233-3960; fax 202-233-3990; e-mail . ©2016 Association of Schools and Programs of Public Health

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Public health policy works best when grounded in firm public health standards of evidence and widely shared social values. Yet, ethical aspects of public health policy often go unexamined, or remain implicit, even invisible. While most policy makers would agree that public policy should and does reflect social values, few identify ethical deliberation (i.e., systematic articulation of values and justification of action on ethical grounds) as integral to policy development. In this article, we argue for incorporating a specific method of ethical deliberation—deliberative public bioethics—into public health policy-making, and describe how it has made, and can continue to make, important contributions to public health. Using the Human Genome Project (HGP) Ethical, Legal, and Social Implications (ELSI) program as an example of effective incorporation of deliberative processes to integrate ethics into public health policy, we examine how deliberative public bioethics can integrate both public health and ethics perspectives into three areas of public health practice: research, education, and health policy. First, we map the conceptual terrain, describing how deliberative public bioethics is a method of engagement distinct from the topical areas addressed in medical, research, and public health ethics. By identifying overlapping activities and interests within public health and deliberative public bioethics, we articulate a working definition of deliberative public bioethics that highlights the potential for mutually beneficial collaborations. Second, we recognize that such collaborations are not entirely new even if they have not been identified as such. Using the HGP ELSI program, we illustrate how integrating deliberative public bioethics into the public health policy-making process can harness the strengths of both fields. Third, we outline several recommendations for future collaboration and integration efforts. METHODS Beyond the clinical paradigm: Early bioethics, public health ethics, and deliberative public bioethics Bioethics began with a focus on the patient-provider interaction. During the past several decades, many subspecialties of bioethics have developed, including clinical ethics, research ethics, and, most recently, public health ethics. Beyond these topics, bioethicists engage in a number of activities, from academic discourse to policy-making based in deliberative public bioethics methods. Here, we offer a picture of how public health and deliberative public bioethics can collaborate to improve public health. A few key terms will help to clarify this discussion:

  1. Clinical ethics: a topical area, or subspecialty, within bioethics concerning the values and moral traditions that guide ethical clinical health-care practice   2. Research ethics: a topical area, or subspecialty, within bioethics concerning the values and moral traditions that guide ethical research practice, especially for research involving human participants   3. Public health ethics: a topical area, or subspecialty, within bioethics concerning the values and moral traditions that guide ethical public health practice  4. Deliberative public bioethics: what we, as a society, do collectively to integrate ethical deliberation into the design of science and health policies to assure conditions in which people can lead flourishing lives Early bioethics. Bioethics emerged during the 1960s and 1970s in the United States in conjunction with the patients’ rights movement and revelations of unethical research.1 Because of its origins, public health professionals often equate bioethics with difficult clinical decisions or with research review and compliance. Often, clinical and research ethics are thought to advocate for patient and participant choice, or the principle of “respect for persons,” among other principles that emphasize the individual.2–4 In practice, however, bioethics encompasses a much broader array of both topics and activities that extend far beyond autonomydriven bioethics.5 From the most theoretical debates to the nuts-and-bolts actions of health professionals, contemporary bioethicists engage with diverse ideals and practical decisions throughout the health professions. Capturing this more encompassing view that extends from theory to practice, bioethics has been defined as “the systematic study of the moral dimensions—­ including moral vision, decisions, conduct, and policies—of the life sciences and health care employing a variety of ethical methodologies in an interdisciplinary setting.”6 This broader understanding is needed for both bioethicists and public health professionals to recognize past contributions and envision future collaborations. Public health ethics. In recent decades, public health ethics has emerged as a topic area, or subspecialty, within bioethics. In the 1990s and early 2000s, discussions centered on such theoretical topics as the moral foundations of public health and epidemiology, including such moral traditions as human rights and social justice.7–9 Public health ethics also incorporates

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political theory, which is needed to ground the public policy aspect of public health.10,11 Although numerous ethical frameworks have been offered in the literature, public health ethics has recently begun to converge with respect to the moral values that ground public health work.12 Contemporary conversations in public health ethics span numerous public health practices, including some topics that arise in clinical medicine but merit reexamination in public health settings, such as research ethics and professional codes of conduct.13,14 Public health education reflects this emphasis on ethics, as it explores options for ethics training of future public health professionals.15,16 The current focus on the ethical dimensions of public health suggests some initial parallels to, but also important differences from, the historical development of clinical and research ethics. Bioethics initially arose through transformation of individual patient-provider decision-making within the clinical context into collective decision-making processes incorporating perspectives of others with an interest in the clinical encounter.1 Public health decision-making is often collective, incorporating many forms of expertise, from epidemiology to health communication. Recent attention on ethics in public health might signal a transformation parallel to that in clinical ethics, reflecting increasing awareness of the relevance of other disciplinary perspectives, including those of ethicists and professionals trained in the humanities and social sciences.17 Deliberative public bioethics. Clinical, research, and public health ethics constitute the subject matter of bioethics, while deliberative public bioethics concerns modes and venues to engage these topics. Although the former can be considered some of what bioethics addresses, deliberative public bioethics offers both a how and where. Beyond the subject matter distinctions among clinical, research, and public health ethics, bioethicists engage the public and affected communities around ethical dimensions of public health research and practice. “Public bioethics”—without the “deliberative” modifier—has been defined as “governance of science, medicine, and biotechnology in the name of ethical goods.”18 This definition is intentionally legalistic, but public bioethics also encompasses contributions from many other perspectives, including views gleaned through public engagement. To capture this inclusiveness, public bioethics has also been defined as “institutions with the declared aims of facilitating societal debate and providing policy advice in certain areas of scientific inquiry raising questions of values and legitimate science.”19 In addition to science policy, public bioethics also engages in matters of health

policy and involves ethical discussions about the values at stake, enabling the articulation of a range of ethical positions within a public sphere.20 As with a more inclusive understanding of bioethics, we are proposing a broader definition of public bioethics to emphasize the possibilities for ethically engaged, informed discussions in public health. Our intention is to prompt a reimagining of public bioethics. If public health is “what we, as a society, do collectively to assure the conditions in which people can be healthy,”21 and public bioethics concerns incorporating ethical deliberation in science and health policy, then we might articulate a working definition of deliberative public bioethics as what we, as a society, do collectively to integrate ethical deliberation into the design of science and health policies to assure conditions in which people can lead flourishing lives. This definition calls on bioethics and public health professionals to set a collaborative agenda to further science and health policies that explicitly include both kinds of expertise in their work. Deliberation is not merely reflection on or debate about the merits of a particular policy or action. Deliberation is an inclusive engagement process driven by the goal of seeking agreement on how to act or which public policy to set.22 Deliberative processes bring together many forms of expertise and community perspectives and cultivate a commitment to building agreement on a way forward. Deliberative processes can be helpful in navigating policies with ethical dimensions, especially when reasonable citizens have different views about how a policy will affect them or what is at stake.23 Deliberative public bioethics aims to move beyond adversarial approaches to public policy, helping citizens, experts, and policy makers discover and develop a view of the common interest.24 Deliberative public bioethics can be seen in action by the public meeting and reports of national bioethics bodies, including presidential bioethics advisory commissions.25–27 By fostering a national discussion of complex, value-laden issues, deliberative public bioethics can emphasize aspects of public health policy that might not be fully addressed elsewhere.26,27 OUTCOMES The HGP ELSI program We look now at one of the first collective public efforts to incorporate a public health scientific endeavor and deliberative public bioethics, the HGP ELSI program.28,29 The United States led the HGP, a large-scale, international, public genomic science endeavor, from 1988 through 2003. There was a great deal of excitement about what we might learn about ourselves and

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how we might use these discoveries for the betterment of the human condition. Accompanying this excitement about what we could do with these important discoveries were questions about what we should do with them. The HGP ELSI program demonstrated a commitment to integrated ethical deliberations at the start and throughout the scientific investment in the interest of developing health policies that improved lives. Although more commonly associated with research ethics and medical ethics of translational genomics, the HGP ELSI program included a robust collaboration between public health and bioethics. These collaborations allow us to examine lessons learned to aid in future joint efforts. Starting in 1990, coordination of the HGP ELSI program was shared by the National Institutes of Health (NIH) and U.S. Department of Energy (DOE).28 Although the joint efforts of NIH and DOE were largely discontinued toward the end of the HGP in 2003, both agencies continue to invest in Centers of Excellence in ELSI Research. From NIH, the National Human Genome Research Institute (NHGRI) distributes $15–$20 million in ELSI research support each year.30 The premise of the HGP ELSI program was the notion that multidisciplinary collaboration is needed to form sound social policies concerning rapidly evolving scientific advances.31 The HGP ELSI program has been reviewed by numerous scholars, and these reviews outline the integrated collaborations in research, education, and policy.29,30,32,33 Integration through research. Because HGP ELSI research was funded by both NIH and DOE, research projects reflected the goals, funding mechanisms, and priorities of these agencies. In the mid-1990s, NHGRI expanded the HGP ELSI program to conduct independent research on ethics topics arising from genetic research broadly, but not tied to a specific HGP research project. HGP ELSI funds were also allocated to help NHGRI anticipate, identify, and address ethical issues arising from their intramural HGP research. One major outcome of the HGP ELSI program was the completion of diverse research activities that examined the impact of genetic testing on individuals, families, and society, with the aim of informing clinical practices and policies related to genetic screening, testing, and counseling.32 A substantial success of these HGP program activities was that they opened the discussion beyond individual researchers, engaging the scientific and affected communities. Among those engaged were public health professionals. For example, in 1995, NHGRI and DOE jointly funded an Institutes of Medicine report on genetic risk and health policy, “Assessing Genetic Risks: Implications for Health Policy and Social Prac-

tice.”32,34 This report both built on and prompted subsequent ELSI scholarship on related topics.29 The report drew a clear distinction between the purposes of genetic testing policies for individuals and genetic screening policies for populations, emphasizing the need for both individual rights and public health paradigms for handling genetic information.34 This dual consideration of the individual and the population is familiar to public health professionals. It is one of the key features that distinguishes public health duties from those in a clinical setting and also has important ethical implications for research that can best inform science and health policy. Integration through education. As the HGP and the HGP ELSI program were put into place, it was particularly important—and challenging—to communicate the sometimes dominant, but often limited, causal power of genes on disease propensity and onset.34 To address these concerns, a portion of HGP ELSI program funds was dedicated to educational initiatives for both formal education and public outreach. Outputs included curricula, Web-based educational activities, and professional training sessions intended for a wide variety of audiences.30,33 In addition, initiatives aimed at improving public education included training courses for high school biology teachers, a television broadcast series, and the setting up of public fora for informed deliberations.35 Engaging the public in both the scientific and ethical dimensions of the human genomic science was a key early accomplishment of the program. For example, in 1996, the DOE supported the production of an award-winning series of radio broadcasts, The DNA Files, covering a range of genetics topics, such as medicine, aging, behavior, and identity.36 Challenging the view of genetic “hardwiring” (i.e., that genetic variation is entirely dispositive of health outcomes), the program hosts interviewed a range of researchers, who repeatedly depicted nature-nurture debates as presenting a false dichotomy.37 By seeking out more complex causal accounts of human health and behaviors, the series consistently challenged simplistic views of the role of genes and how they affect and are affected by the course of a human life.38 ELSI educational programs such as this one exposed the public to public health perspectives, including identifying social and environmental determinants of health. Public health must inform and educate diverse audiences, many of whom are unfamiliar with the population approaches to improving health. Most patients know the role that their doctor plays in their health, but few understand the role of their public health department. The HGP ELSI program illustrates how ethics

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education can communicate the complexity of causal factors that contribute to human health outcomes, which in turn sets the stage for articulating the value of public health institutions and services. Integration through policy. The NIH/DOE Joint Working Group on the Ethical, Legal, and Social Implications of Human Genome Research (working group) was established in 1989 to facilitate early conversations about what policies, including health policies, might be needed in light of potential findings of human genome research.39 For the next eight years, the working group guided ELSI programs. One area of visible policy recommendations offered by the working group was against using genetic information to deny healthcare coverage, and another was its support of model genetic discrimination legislation.40,41 Although the model legislation was not introduced, early support from the working group and others created the historical backdrop against which the Genetic Information Nondiscrimination Act of 2008 (GINA) was proposed and passed.42–44 GINA anticipated important ethical and legal concerns and was drafted to protect individuals from health insurance and employment discrimination based on genetic information.43 The working group also collaborated with the U.S. Equal Employment Opportunity Commission to publish guidance on how the Americans with Disabilities Act applied to discrimination based on genetic predispositions.32,45 Both of these policy efforts reflect a commitment to equality of opportunity: the need to establish a level playing field in society regardless of one’s health status.46 Increasingly, contributors in public health ethics have embraced social justice as a strong ethical foundation for public health practice.9 More recently, Georges Benjamin, executive director of the American Public Health Association, acknowledged that critical understanding of public health values, such as health equity and social justice, offers an important tool for health improvement.47 In policy-making, both public health professionals and bioethicists would do well to heed the example of the HGP ELSI program and consider how the foundational values of public health can help anticipate as well as justify changes in health and science policy. LESSONS LEARNED Future collaboration The HGP ELSI program was the first national effort to raise important questions about how to best harness multidisciplinary and public collaborations to inform future research, foster public trust and engagement, and develop responsive law and policy with respect to

an emerging technology.32 Beyond emerging technologies, deliberation has been employed in debates about health-care priority setting, justifying public health interventions, and guiding public policy for research in biobanks.48–50 The integrated, deliberative, and public nature of the HGP ELSI engagement strengthened the public’s knowledge and acceptance of the benefits and limitations of genomic science and its impact on public health. It demonstrated how efforts to ask questions about what we should do, in addition to what we can do, help facilitate science and public health. Engaging the public is a priority for both public health and deliberative public bioethics. Integrating deliberative public bioethics methods into public health proved possible and desirable in genomics, setting a new standard expectation for future engagement. Some public health professionals might be skeptical of efforts to integrate, or combine, deliberative public bioethics and public health activities. Often, this skepticism arises from fear that ethics is associated with mechanisms that slow down or stall important programs.51 Also, at a time when resources for achieving public health goals are already scarce, setting aside funds for parallel or embedded ethics companion projects has the potential to place additional stress on limited budgets. Moreover, insofar as deliberative public bioethics entails seeking public perspectives and public justifications for policies, constraints on time and resources can lead to initiatives that start out with good intentions but end up appearing inadequate at best and as tokenism at worst. Such skeptical objections might be based on different but related concerns about what deliberative public bioethics can achieve, what constitutes high-quality public deliberation about ethics topics, and what obstacles such efforts are likely to encounter.52 We face an explicit challenge to integrating bioethics and public health, where promoting early integration hinges on supplying evidence of the value of such programs. However, supplying examples of success in turn depends on adequate investment. The growth of public health ethics—and interest in interdisciplinary assemblage of public health topics and their ethical, legal, and social dimensions—suggests that many public health professionals welcome greater efforts at integration, including lessons learned from the HGP ELSI program. For example, the inclusion of ethics in core competencies of public health is likely to continue to generate conversations about how such competencies should be reflected in public health curricula as well as professional development.16 The relative novelty of public health ethics also provides an opportunity to build interest among other public health professionals, including those who have disciplinary

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lenses that can lend new insights and collaborations that can offer new tools for grappling with complex ethical and practical problems. In particular, insofar as value-laden decisions can be personally and professionally demanding, deliberative public bioethics offers public health professionals assistance in shouldering the burden of such weighty choices. Ideally, ethical analyses should help professionals anticipate a need for ethical justification and facilitate management of ethical conflicts when they arise, both of which are unavoidable. As the HGP ELSI program illustrates, deliberative public bioethics can offer public health professionals an additional set of tools and skills for grappling with complex problems. It cannot, however, promise perfect solutions. Moral dilemmas most commonly arise in cases where there are no perfect solutions, where sound reasoning and important human values can support multiple courses of action. In such circumstances, it is not surprising that the challenges of grappling with such complexity are compounded by inadequate resources. In addition, attempts to integrate ethics into public health will face obstacles characteristic of multidisciplinary endeavors, including questions about the value of such efforts. The fact that questions remain about how best to integrate deliberative public bioethics into public health does not provide sufficient justification for abandoning efforts for engagement. Rather, such concerns support thoughtful and careful planning to engage both invested and skeptical stakeholders in transparent decision-making about the important ethical dimensions of public health practice and policy. In setting an agenda for integrating deliberative public bioethics methods into public health, we must pay careful attention to the goals of such efforts, as well as how to anticipate and overcome likely obstacles.53,54 The HGP ELSI program offers some important lessons. The following recommendations offer some starting points for the integration of deliberative methods into public health practice. Delineate clear objectives. Deliberation offers a way to increase accountability, as rationales for public health policies cannot be understood or legitimately challenged if they are not made public.23 In addition, deliberation can address the policy-making process itself, engaging stakeholders on how decisions should be made. As deliberation aims to generate agreement on a way forward, what the public and other stakeholders are aiming to agree on should be clear. The goals and objectives of a deliberative public bioethics endeavor should be clear and attainable. Objectives should be clearly outlined to facilitate appropriate evaluation methods for both process and outcome

measures. Routine assessment of progress toward achieving objectives will provide timely feedback for adjustments and help to inform future deliberations should policies merit revision. Anticipate the challenges of professional silos. Public health and bioethics are both multidisciplinary practices, each encompassing a variety of professional traditions and perspectives. Both intra- and inter-professional dynamics in public health and between public health and bioethics are likely to involve different priorities and can result in misunderstandings that put the value of various perspectives in tension with one another. Explicit attention to crossing disciplinary boundaries should be built into collaborations from their inception and is essential to ensuring that ethical analyses are responsive to public health needs.32,33 Link program objectives to funding mechanisms. Public health professionals recognize the importance of investing in ethical and social analyses that can make real and lasting contributions to public health research, policy, and practice. To achieve these high expectations, funding for such activities cannot merely be redirected from other project funds. In a time of limited budgets, it is clear that without dedicated funding, deliberative public bioethics will not occur. If such public engagement is to successfully incorporate perspectives from law, social science, humanities, political science, and the public, then the funding for such efforts is essential.55 Develop dual-training programs that build public health and ethical vocabularies and skills. The use of deliberative public bioethics methods by public health professionals depends on communication among professionals from various disciplines. Dual training enables those with public health expertise to build an ethics vocabulary and the requisite skills of conceptual analysis and critical thinking. It can teach those with bioethics expertise to understand public health research and practice, providing the necessary skills to interpret and communicate concepts of epidemiology and population health. Such reciprocal training operates best when it appreciates both the rigor of disciplinary training and the versatility needed to transcend disciplinary boundaries. CONCLUSION Public health professionals have long dealt with how best to justify public health policies, seeking processes that reflect public accountability for policies and practices that affect entire communities. Integrating insights of deliberative public bioethics methods into public health provides an effective way to achieve this

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accountability. By illustrating how deliberative public bioethics and public health perspectives joined to achieve a public discussion on human genome science, the HGP ELSI program reveals the possibility for public health to both invigorate and be invigorated by deliberative public bioethics. By broadening such efforts across public health, we can set an agenda for integration, ensuring that research, education, and policy-making are soundly ethical and in service of the public’s health. The views expressed in this article are those of the authors and do not necessarily represent the official position of the U.S. Presidential Commission for the Study of Bioethical Issues or the U.S. Department of Health and Human Services.

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43. Gruber J. The new Genetic Information Nondiscrimination Act: how it came to pass and what it does. GeneWatch 2009;22:4-6. 44. Beals JK. Genetic Information Nondiscrimination Act passes US House once again. Medscape Medical News 2008 Mar 10 [cited 2015 Jun 11]. Available from: http://www.medscape.com /viewarticle/571216 45. Rothstein MA. GINA, the ADA, and genetic discrimination in employment. J Law Med Ethics 2008;36:837-40. 46. Buchanan A, Brock DW, Daniels N, Wikler D. From chance to choice: genetics and justice. New York: Cambridge University Press; 2001. 47. Benjamin GC. Health equity and social justice: a health improvement tool. Views from the Field 2015 May 19 [cited 2015 Jun 11]. Available from: http://www.gih.org/files/filedownloads /health_equity_social_justice_APHA_may_2015.pdf 48. Mitton C, Smith N, Peacock S, Evoy B, Abelson J. Public participation in health care priority setting: a scoping review. Health Policy 2009;91:219-28. 49. Upshur RE. Principles for the justification of public health intervention. Can J Public Health 2002;93:101-3.

50. O’Doherty KC, Burgess MM. Engaging the public on biobanks: outcomes of the BC biobank deliberation. Public Health Genomics 2009;12:203-15. 51. Kenny N, Giacomini M. Wanted: a new ethics field for health policy analysis. Health Care Anal 2005;13:247-60. 52. Strong C. Medicine and philosophy: the coming together of an odd couple. In: Garrett JR, Jotterand F, Ralston DC, editors. The development of bioethics in the United States. Dordrecht (Netherlands): Springer; 2013. p. 117-36. 53. Ryfe DM. Does deliberative democracy work? Annu Rev Polit Sci 2005;8:49-71. 54. Scutchfield FD, Hall L, Ireson CL. The public and public health organizations: issues for community engagement in public health. Health Policy 2006;77:76-85. 55. Presidential Commission for the Study of Bioethical Issues. Gray matters: integrative approaches for neuroscience, ethics, and society. Washington: Presidential Commission for the Study of Bioethical Issues; 2014.

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Integrating Public Health and Deliberative Public Bioethics: Lessons from the Human Genome Project Ethical, Legal, and Social Implications Program.

Public health policy works best when grounded in firm public health standards of evidence and widely shared social values. In this article, we argue f...
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