Combining the miracle of life and science, path-breaking developments in biomedicine tend to become front-page news and raise high hopes among patients and the general public. For instance, using embryonic stem cells, scientists are trying to revive degenerated tissues or develop organs.1 Should they succeed, these developments would be a paradigmatic change in medicine and may solve the eternal problem of organ shortage that has prevented people from receiving life-saving organ transplantation. Using stem cell from embryos cloned from the patient’s cell, the technology of therapeutic cloning can further produce organ that may avoid graft versus host diseases. With techniques of somatic nuclear cell transfer, some even claim that they can clone people should they desire offspring with genes exactly identical with them.
Novel technologies as such have stirred moral concerns about the proper limit of science. As these concerns involve profound issues such as moral status of embryos or what makes humans human, they often reflect different attitudes that stems from more fundamental differences in religion, culture as well as political ideologies. This in turn makes disagreements in these issues morally too fundamental to compromise thus most difficult to resolve.
Policy frameworks worldwide are mostly ill-equipped to provide much guidance on these issues. Although issues like the permissibility to conduct embryonic stem cell research may fall within the periphery of regulations for reproductive medicine and relevant research, existing law is often inadequate to address these concerns since such novelty often did not occur to legislators in the past.
To cope with these situations, policy-makers worldwide have been seeking counsels from national bioethics commissions of all varieties. Many of these commissions were established to follow the legacy of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research2 that published the influential Belmont Report3 in the
1. So far, stem cell from bone marrow and umbilical cord blood are routinely used to treat leukemia, and scientists are experimenting to use stem cell to treat cancer, parkinson’s disease, spinal cord injuries, amyotrophic lateral sclerosis, multiple sclerosis and muscle injuries. Developments for using stem cell to treat kidney diseases, heart diseases and liver diseases are also in progress. For an overview of the current status, see Preeti Chhabra et al., Regenerative Medicine and Tissue Engineering: Contribution of Stem Cells in Organ Transplantation, 14 CURRENT OPINION ORGAN TRANSPLANTATION 46 (2009).
2. The Commission was established by the National Research Act, Pub. L. No. 93-348, 88 Stat.
342 (1974).
3 . For a history of the report, see Tom L. Beauchamp, The Origins, Goals and Core Commitments, The Belmont Report and Principles of Biomedical Ethics, in THE STORY OF BIOETHICS:FROM SEMINAL WORKS TO CONTEMPORARY EXPLORATIONS 17, 39 n.7 (Jennifer K.
Walter & Eran P. Klein eds., 2003).
United States, or the Warnock Committee4 that paved the way for the Human Fertilisation and Embryology Act in the United Kingdom.
An observation of these commissions indicates that, though mostly advisory in their nature, they often are expected to set the benchmark of the government’s bioethics policy. This influence sometimes comes from subsequent legislations that codify the commissions’ decision. But administrative agencies with decision-making powers may also adopt their recommendation directly and make it their policy.
As a result, from different perspectives, the performance of national bioethics commissions has been constantly under scrutiny. For instance, many scholars criticized U.S. President’s Council on Bioethics’ recent operation as partisan politics.5 George Annas also expressed his pessimism in pointing out that “bioethics has been called on primarily by politicians to help them neutralize contentious issues, or to provide ethical cover for policy decisions that have already been made . . . , and when called on has usually been called on late and treated like a second-class citizen.”6 After comparing blue ribbon bioethics commissions’ political influence in the U.S.
and in the U.K., Riley and Merrill argues that although national bioethics advisory commissions may serve to inform the public, they cannot reach consensus when there is none in a society like the U.S.7
But whether commissions’ recommendation is adopted as the final policy or legislation should not be the only criteria to evaluate its performance, since it may also serve to clarify facts, probe issues, share perspectives, increase mutual understanding among opposing parties that are necessary for on-going public debate. Likewise, the fact that recent bioethics commissions tend to be tied up with politics only reminds us of the reality of bioethical policy, but does not provide us a reason to dismiss their value altogether. In fact, if properly structured and operated, national bioethics commissions may clarify facts and issues, facilitate opposing parties’ mutual understanding and lead toward better quality of decision-making in the future, if not right now. The real problem is how we can properly structure these commissions to make better use of them.
We think that the idea of deliberative democracy provides important insights for governments seeking to cope with moral disagreements in
4. MARY WARNOCK, A QUESTION OF LIFE: THE WARNOCK REPORT ON HUMAN FERTILISATION AND EMBRYOLOGY, viii-ix (1985).
5. Udo Schuklenk, National Bioethics Commissions and Partisan Politics, 22 BIOETHICS ii (2008).
6. George J. Annas, Will the Real Bioethics (Commission) Please Stand Up?, 24(1)HASTINGS CENTER REP. 19, 21 (1994).
7. Margaret Foster Riley & Richard A. Merrill, Regulating Reproductive Genetics: A Review of American Bioethics Commissions and Comparison to the British Human Fertilisation and Embryology Authority, 6 COLUM. SCI. & TECH. L. REV. 1 (2005).
bioethical issues. According to Gutmann and Thompson, deliberative democracy is “a form of government in which free and equal citizens (and their representatives), justify decisions in a process in which they give one another reasons that are mutually acceptable and generally accessible, with the aim of reaching conclusions that are binding in the present on all but open to challenges in the future.”8
Although literature of deliberative democracy abounds, scholars constantly question how this ideal can be achieved through concrete institutional designs.9 In response, scholars have been experimenting different formats of public participation such as citizen conference, citizen jury, deliberative polls or public consultations of more informal forms. Yet, except in Denmark, most of these forms of citizen participation are not institutionalized into ordinary structure of policy making.10 Moreover, what relationship should these forms of public participation have with existing political institutions is unclear.
Given national bioethics commissions’ prominent presence in bio-politics worldwide and their possible influence over policy-making in bioethical issues, we think they deserve more critical analysis from a deliberative democratic point of view, particularly their potential to cope with intricate moral issues resulting from paradigmatic developments in biotechnology. Hence, instead of looking into substantive issues abound in bioethics, this paper chooses to examine “how” should these issues be decided, and “how” to structure a better bioethics commission that can facilitate a moral consensus in a democratic society.
In order to explore this issue, this article uses government policy of embryonic stem cell research as an example, because the intricate moral, political and religious issues involved crystallize the difficulties a government may encounter in coping with moral disagreements. This article will look into anecdotal studies based on national bioethics commissions including, but not limited to, the President’s Council on Bioethics of the U.S., and other commissions whose performance is available in the literature, and examine their promises and pitfalls in facilitating the idea of deliberative democracy which we think is most crucial for the policy making regarding embryonic stem cell research.
By relying upon literature on the operation of national bioethics commissions, this article obviously cannot claim to be a comprehensive or
8. AMY GUTMANN & DENNIS THOMPSON, WHY DELIBERATIVE DEMOCRACY 7 (2004).
9. For a survey of these discussions, see James Bohman, Survey Article: The Coming Age of Deliberative Democracy, 6 J. POL. PHILOSOPHY 400, 419-22 (1998).
10. For a more introduction of how Denmark institutionalizes citizen participation into the policy making of science, see Lars Klüver, Consensus Conferences at the Danish Board of Technology, in PUBLIC PARTICIPATION IN SCIENCE: THE ROLE OF CONSENSUS CONFERENCES IN EUROPE 41 (Simon Joss & John Durant eds., 1995).
exhaustive study of all the pros and cons of national bioethics commissions’
function to facilitate deliberative democracy. Moreover, this article sees the ideal of deliberative democracy as a moral ideal that one must strive to achieve. Hence, even if we may not be able to identify clear causation between these commissions’ recommendation and the final government policy, it may only mean they have not succeeded yet, and that more work is required. In this sense, this study is just a beginning.
The term “bioethics commissions” requires some clarification upfront.
Regardless of their actual title, modern societies often make use of commissions of various kinds to cope with bioethical issues. These commissions typically include people with backgrounds from medicine, biology, law, philosophy, and social sciences that can provide expertise or relevant view points useful in making a recommendation or decision.
Some of them have a legal status in the sense that the law mandated their existence and that their opinion has legal effects on individual cases.
These include institutional review boards or research ethics commissions that approve researches involving human subjects or while monitoring the progress, intervening into researchers’ unethical conducts when necessary.
A second strand of ethics commissions refers to those with pure advisory function, and exits in non-governmental organizations such as hospital ethics commissions or ethics commissions in medical societies that advise their colleagues on ethical issues, mostly also in particular cases.
Some of their decisions might lead to further discipline within the organization, but the authority to do so stems from bylaws of these private institutes or societies rather than statutes passed by the Legislature.
A third kind of ethics commissions refers to those set up by the government to provide bioethical counseling on a policy level rather than case by case, to the ultimate policy-maker, be it the President, the Congress, or a particular regulatory agency. These types of bioethics commissions exist in all levels of government or non-government organization in many formalities. This is the type of bioethics commissions we intend to explore in this article. We also choose to focus on national commissions simply because they tend to be the more important ones and have generated more recommendations for study. But our discussion applies to this type of commissions in all level of governments.
Reviewing bioethics commissions worldwide, Dodds and Thomson once distinguished the third type of commissions further into advisory commissions and policy-making commissions, depending on whether they report primarily to the public, or to government agencies that await their advice.11 But since some commissions that they categorize as policy-making
11. Susan Dodds & Colin Thomson, Bioethics and Democracy: Competing Roles of National
also make their recommendation and reasoning public, we think that this difference is more in a matter of degree, and will not distinguish the two in this article.
As of 2006, there are at least 89 national bioethics commissions existing in the world,12 such as the U.S. President’s Council on Bioethics, Germany’s National Ethics Council, and Human Genetic Commission of the United Kingdom. Although their opinions may be advisory in nature, they carry a lot of weight in a democratic society because of their high level in the central government and visibility in the public.
In the following section, we first explain the nature of policy making of embryonic stem cell research, particularly on the fundamental issues that it raises and why traditional democratic politics is ill-equipped to cope with them. From a deliberative democracy point of view, we then explain ideal conditions for approaching the policy-making of such issue. Using anecdotal evidence from national bioethics commissions worldwide, we then identify promises and pitfalls of using them to facilitate deliberative democracy, and finally make concrete suggestions to policy-makers who seek to make use of them.
To sum up, this paper sees national ethics commissions as an opportunity to institutionalize deliberative democracy when coping with highly scientific, yet moralistic issues such as bioethics. Though without any formal decision-making power, national bioethics commissions with adequate transparency, accountability and inclusive membership are better equipped to conduct moral deliberation of highly scientific nature than other institutions in the constitutional democracy. With a size small enough to allow deliberative debate, yet pluralistic enough to reflect possible societal viewpoints, if properly structured, national bioethics commissions’ opinions can set a de facto burden of reasoning for public policy makers should they seek to decide otherwise. This in turn would create pressure for sound moral reasoning in a policy area that tends to be infused with bio-politics and hence realize the ideal of deliberative democracy.