Growing respect for opposition.
Health care reform
Public health (Analysis)
|Publication:||Name: The Hastings Center Report Publisher: Hastings Center Audience: Academic; Professional Format: Magazine/Journal Subject: Biological sciences; Health Copyright: COPYRIGHT 2011 Hastings Center ISSN: 0093-0334|
|Issue:||Date: May-June, 2011 Source Volume: 41 Source Issue: 3|
|Product:||Product Code: 8000120 Public Health Care; 9005200 Health Programs-Total Govt; 9105200 Health Programs NAICS Code: 62 Health Care and Social Assistance; 923 Administration of Human Resource Programs; 92312 Administration of Public Health Programs|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
In this second installment of essays selected during our fortieth
anniversary contest last year, authors look at how bioethics is done,
paying particular attention to respect for other points of view,
rethinking how issues are framed, and developing a common moral
framework that can reach across disciplines.
The next forty years will see us through the most imperative issues in bioethics and public health today. We will face continuing challenges regarding health care reform, reproductive freedom, and euthanasia. We will confront growing disparities stemming from global development and cope with complex questions of social and environmental justice. We will grapple with the health effects of global climate change and with the implications of the rapidly expanding role of genomics in health research and practice. Bioethicists will face no shortage of contentious issues in the coming decades, but as I begin my career, I wonder if we are prepared to meet them.
With the topics of normative debate so ripe for discussion, it is the process of decision-making in bioethics that I believe merits more attention. The most pressing issue for bioethics may not be in the content of moral discourse, but rather in the way we engage in it. Fundamentally a discipline based in dialogue, bioethics depends on participation--on the articulation of values and principles and the willingness to deliberate with those who disagree. Particularly with the aim of informing policy, dialogue is a cornerstone of bioethics that is swiftly eroding.
Today, dialogue among bioethicists, policy-makers, and the public is far from robust, yet it will be key to addressing the bioethics debates of the future. While democratic theory has long underlain arguments for the inclusion of public reason in public policy, there are several factors that raise public engagement over the next forty years to new importance.
First, the normative dimensions of many of the policies we face will arise from the development of new technologies for which the harms and benefits are not yet known. Whole-genome sequencing, tissue engineering, nanotechnology, and stem cell therapy are just a few of the nascent technologies that hold uncertain consequences when introduced to medicine, public health, and consumer markets. Furthermore, the increasingly rapid translation of technology to the public results in access to technology before its consequences can be fully recognized. Coupled with what are often less-than-conclusive claims about benefits and about who will gain those benefits, these issues pose additional challenges to ethical decision-making. Relying on experts to review evidence and balance risks and benefits will not suffice when evidence is conflicting, benefits are unclear, and harms may be unrecognized. The controversy around direct-to-consumer genetic testing and the utility of personalized medicine are case examples where ethical policy development will require consulting many more diverse perspectives than have been sought in the past, including those of the public.
Second, we live in a society more pluralistic than ever before. Particularly in the United States, but globally as well, each society holds within it a growing number of value systems. The single most important issue facing bioethics stems from the diversity of accepted frameworks, beliefs, and moral values held by the population today. The work of bioethics in reaching one well-justified and decisive course of action is no longer sufficient. As scholars have recognized, policy-making in pluralistic societies will not be a matter of choosing the single justified option, but rather, choosing from several mutually exclusive options that are each justified under a reasonable, yet distinct, set of values. (1)
In response to the changing nature of policy-making in pluralistic societies, a number of bioethics scholars have suggested that the principles of deliberative democracy may be the way forward. (2) Requiring thoughtful criticism of arguments, wherein the underlying values are made explicit, deliberative democracy aims to generate decisions that are, if not endorsed by all, at least reasonable to all parties as consistent with a recognized moral framework. Deliberative democracy is an appealing strategy to facilitate the decisions necessary for public policy development. The practical application of deliberative democracy, however, and its role in policy formation are not yet well determined. Deliberative democracy requires participation--public engagement with the policy process and mutual respect among citizens. Above all, deliberative democracy requires participants to acknowledge and respect alternative positions and be open to persuasion. Though it is an ideal model for bioethics forums, extending the practice of deliberative democracy to policy-makers and the broader public is no easy task.
In the shadow of the 2009 health care town halls and the notorious claims of "death panels" in proposed health reform legislation, the state of mutual respect between citizens and government is corroding. The health care debate showcased exactly how polarizing public discourse can be, particularly when fueled by media sound bites and inflammatory headlines. The fundamental respect among participants in public discourse that deliberative democracy requires is a far cry from the partisan reality today. Indeed, deliberative democracy is sometimes met with the criticism that it is merely a lofty ambition of academic elitists that does nothing to give voice to the values of everyday citizens. (3) While I certainly do not believe this is the case, we need to do more to counter criticisms and establish what deliberative democracy looks like on a national scale.
We need to show that it is possible to have dialogue without imposing values, that public deliberation can result in informed and legitimate conclusions, and that it can be done without further marginalizing minority opinions. We need to refine methods for determining how and who to engage in deliberation, and the forums best suited for deliberation. And we need to be explicit about how the input gathered through public deliberation will be used.
There are a few good examples of public engagement in ethics and policy--of note is the work by the Genetics and Public Policy Center regarding reproductive genetics and biobanking, as well as the British Columbia Biobank Deliberation. (4) However, even if such initiatives were common, they are only the beginning of translating normative recommendation to policy. What are the next steps? What role does the information gathered through public deliberation play in policy formation? What happens when public opinion fails to align with the conclusions of "expert" ethics commissions? (5) The issues of the coming decades will demand a more comprehensive understanding of how to both engage the public in deliberation effectively and integrate public input into policy.
How do we begin? Public engagement, outreach, and innovative methods for teaching normative deliberation have never been more appropriate issues for bioethics. As bioethicists we need to take the lead in fostering public interest in normative discourse and respect for opposing opinions that are consistent with different moral frameworks. The question for the next forty years of bioethics is, How can we cultivate this respect?
Now is the time to be creative in our approach to this question. The first audience we need to reach out to is young adults. Social media has recently been suggested as a way to engage the public, especially younger generations. (6) While we need to be careful in how we use forums that potentially favor brevity over clarity and provide little accountability, tools like Facebook and Twitter may go a long way to spark public interest and spread basic knowledge about issues in bioethics. They are public forums that we can take advantage of today.
A longer-term goal may be focusing on ways to engage high school students in national debates. There is no better time to become engaged in social conversations than just as one prepares to vote and join the workforce. Perhaps in the form of a televised teen town hall, a national essay contest or chat room, or something else entirely, we should invest in whatever it takes to motivate youth into participating in discussion. Engaging youths early is essential to growing public engagement in the future, raising interest in and awareness of controversial issues, and including the voices of those who will be left to live with and pay for the policies we enact today. Whatever we do, we need to communicate that ethics is a deliberative process that many disciplines can use; we need to promote ethics education not as the act of instilling values, but as the act of developing deliberative skills.
If we cannot engage in deliberative discussion with the public who will be bound by policy decisions, then we will not be able to shape policy recommendations that reflect underlying social values. Ethical analysis of the policy issues of the future will necessitate real deliberation that can only happen when trust and respect between citizens and governments is secure. While this idea is not new, it has yet to be achieved. How do we engage the public in thoughtful deliberation with so many value systems coexisting? How do we grow respect for opposition? Pluralism is a strength of modern societies, but one that compels change in the way we engage each other. In a pluralistic society, our obligation to promote justice calls upon our obligations to each other: to challenge each other, to defend our beliefs, to foster mutual respect, and to coexist in the absence of consensus without notions of superiority. The work of ethics in the next forty years is to cultivate the respect and willingness to deliberate. While the issues we will confront will present challenges in their own right, we must not overlook the importance of our process, lest we leave the public behind and our mission with them.
(1.) S. Holm, "Policy-Making in Pluralistic Societies," in The Oxford Handbook of Bioethics, ed. B. Steinbock (New York: Oxford University Press, Inc., 2007), 153-74.
(2.) A. Gutmann and D. Thompson, "Deliberating about Bioethics," Hastings Center Report 27, no. 3 (1997): 38-41; Holm, "Policy-Making in Pluralistic Societies."
(3.) See J. Bovard, "Deliberative Democracy Dementia," The Freeman 57 no. 5 (2007), http://www.thefreemanonline.org/featured/ quotdeliberative-democracyquot-dementia/.
(4.) Genetics and Public Policy Center, "Public Engagement and Participation," 2010, http://www.dnapolicy.org/policy.engage.html; K.C. O'Doherty and M.M. Burgess, "Engaging the Public on Biobanks: Outcomes of the B.C. Biobank Deliberation," Public Health Genomics 12, no. 4 (2009): 203-215.
(5.) See D.G. Jones, M.R. King, and M.I. Whitaker, "Who Gets Born? How Did New Zealand's Bioethics Council Arrive at Its Recommendations?" New Zealand Medical Journal 122, no. 1294 (2009): 84-91.
(6.) A.C. Regenberg, "Tweeting Science and Ethics: Social Media as a Tool for Constructive Public Engagement," American Journal of Bioethics 10, no. 5 (May 2010): 30-31.
Amy Paul, "Growing Respect for Opposition," Hastings Center Report 41, no. 3 (2011): 17-19.
Amy Paul is currently a Ph.D. student in the bioethics and health policy track at Johns Hopkins Bloomberg School of Public Health. She is a graduate of the University of Washington's Institute for Public Health Genetics. Her research interests are broad and include issues of social justice and women's health policy, public engagement, and accountability in global health initiatives and resource allocation.
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