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BIOETHICS

Commissions on a Mission

Bioethics Counsels Past and Future

President's Council on Bioethics seal SOURCE: bioethics.gov If the Obama administration hopes to move a new bioethics commission beyond the culture wars that embroiled much of the Bush council’s work, substantial efforts will be necessary to bring together now-divided bioethicists for pragmatic discussion.

On September 31, executive order 13446 expires, and with it, so does the charter of the President’s Council on Bioethics. But in June, the Obama administration disbanded the council ahead of schedule because, as The New York Times reported, it “was designed by the Bush administration to be ‘a philosophically leaning advisory group’ that favored discussion over developing a shared consensus.” According to a White House press officer quoted in the same article, the president plans to establish a new council “that ‘offers practical policy options.’”

Now, as the administration develops plans for this new group of advisers, is a perfect time to reflect on the history of national bioethics commissions and to consider specifically the work of the last commission. As well, clarifying the goals of a new commission could help to set guidelines for establishing the new commission, such as who should serve and what specific issues it will pursue.

If the Obama administration hopes to take this commission beyond the culture wars that embroiled much of the Bush council’s work,[1] substantial efforts will be necessary to bring together now-divided bioethicists for pragmatic discussion.

The origin and evolution of bioethics commissions

There have been many bioethics commissions over the past 35 years,[2] established for various purposes, as science advanced and the political and cultural climate shifted. The four commissions highlighted here illustrate strengths and weaknesses of commissions in general.

Congress established the first bioethics commission in 1974,[3] dubbed the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Against the backdrop of controversies like Watergate and Vietnam, the commission addressed the issues of how to protect citizens participating in scientific research. In the wake of the Tuskegee Syphilis Study, in which researchers denied African Americans with syphilis information about available treatments, and secret government experiments involving LSD, there was a recognized need to ensure that scientists conducted such research ethically. The commission authored the famous “Belmont Report,” which enumerated the rights of human subjects and the duties of researchers. The report laid out a set of principles that still underscore most bioethical work today: the need for justice, autonomy for research subjects, and beneficence on the part of researchers.

The remarkable success of this commission in translating its recommendations into policy likely lay in the fact that Congress both established the commission and specifically charged it with the mission to make policy recommendations. The members’ success in negotiating decisions seems, from their reports, attributable to a willingness to set aside ideology and work together to solve pressing issues. Although the members came from different ideological backgrounds, they managed to forge a “great Bioethics Compromise” which involved a mission to:

Keep a close eye on scientific innovation for its societal implications, apply the brakes now and then as needed through regulations or guidelines or just the glare of public discussion, and let the bioethicists be the ones to analyze how all this is going.[4]

The compromise relied upon an “implicit agreement that in effect allowed deep divisions about certain issues related to the origins of human life to be courteously ignored.”[5] That is, the commission was able to do the important work of tackling hard questions with a goal of protecting people involved in scientific research without getting bogged down in arguments about sensitive issues like abortion. Although this compromise persisted through the 1970s and 1980s, the culture wars that emerged during the Reagan administration shattered it and forced new commissions to deal with divisive approaches to bioethics. This highlights the new commission’s need to set aside ideological quarrels in order to serve the national need for pragmatic approaches to complex bioethical issues.

The congressionally established President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research operated from 1979 to 1983. This commission produced important reports on difficult topics like informed consent and genetic engineering. In perhaps the commission’s most well-known work on informed consent, “Making Healthcare Decisions,” researchers surveyed members of the public and physicians to reach some of their conclusions. This process, along with the commission’s other efforts, allowed the commission to “bring ethical analysis of the implications of medical practice and research out of the classrooms, the hospital wards, and the scholarly journals and into a public forum in Washington.”[6] The lesson for a new commission is that it should consider the utility of gathering data to inform their recommendations.

In the thick of the culture wars, President Clinton established the National Bioethics Advisory Commission in 1997 by executive order 12975. This commission addressed research ethics, emerging genetic technologies, and public and Congressional concerns about new issues like the ethics of stem cell research, cloning human beings, and conducting research on human subjects in developing countries. No doubt, there will be specific issues the Obama administration wants to address, but it is important that the new commission likewise be permitted to address some newly emerging issues as they see fit.

Although none of the recommendations made by this council were enacted verbatim, according to Elisa Eiseman, a researcher at the RAND institute, many federal and state bills were based on the council’s work and “thirteen bills were introduced in Congress that specifically mentioned NBAC.” Eiseman also explains that many professional societies disseminated NBAC’s publications and many foreign governments considered their recommendations. As Daniel Callahan, a co-founder of the Hastings Center, points out, this commission was largely composed of left-leaning members.[7] Although the commission’s reports were well discussed in the bioethics literature, garnered the attention of policymakers, and the commission did well to probe some important topics, the long-term impact of the group’s work is questionable.

The most recent commission, the President’s Council on Bioethics, emerged during the debate about human embryonic stem cell research. President Bush established this council to assist in his administration’s consideration of this new scientific field, as well as the challenges posed by new biotechnologies. Leon Kass, a prolific scholar from the University of Chicago, initially chaired the council. Given that Kass was well known for his conservative views about biotechnologies, this choice set a tone for the work of the council under his direction. During his chairmanship, from 2001-2005, the council published works on stem cell research, human dignity and human cloning, and the distinction between therapy and enhancement, which often reaffirmed or justified the views of the Bush administration.

In 2005, Edmund Pellegrino, a distinguished physician and professor emeritus at Georgetown University, took charge of the council. Under his chairmanship, the council authored reports on human dignity and bioethics (critiqued here on SP), and on end of life issues. Dr. Pellegrino is well known for his “diplomatic” approach to dilemmas in bioethics, and as expected, under his direction, the council assumed a less “activist” stance.[8]

The roles of a council

Before formally establishing its bioethics commission, the Obama administration should consider the roles it wants the commission to play. Considering these roles will allow the new commission to focus its efforts and resources appropriately. The stated purpose of the Bush council, as set forth in a 2001 executive order was:

  1. To undertake fundamental inquiry into the human and moral significance of developments in biomedical and behavioral science and technology;
  2. To explore specific ethical and policy questions related to these developments;
  3. To provide a forum for a national discussion of bioethical issues;
  4. To facilitate a greater understanding of bioethical issues; and
  5. To explore possibilities for useful international collaboration on bioethical issues.

Each of these roles, however, requires a different set of tools. The new commission could choose to play each of the roles charged to the Bush council, but each would require a different approach. For example, if a new commission aims to participate in scholarly discourse, it should take much different steps than if it aims to educate the public and gather data about public opinion. Consider, for instance, the issue of creating human admixed embryos recently debated in the United Kingdom.

A human admixed embryo is created using the cytoplasm of a rabbit or cow egg and the nucleus from a human skin cell. The nucleus of the human skin cell is transferred to the cytoplasm of the rabbit or cow egg to create a 99.9 percent human and 0.1 percent animal embryo. Researchers hoped to use the technique to provide an ethically neutral source of human embryonic stem cells, in light of a shortage of human embryos and human eggs. But before this research took off, the issue became moot because induced pluripotency stem, or iPS, cell technology provided an ethically neutral source of embryonic-like human stem cells. However, the British approach to this dilemma is an excellent model for future bioethics commissions interested in public education, public consultation and empirical research.

To address ethical questions surrounding this sort of research, the Human Fertilization and Embryology Authority, the body charged with investigation and regulation of reproductive technologies in the United Kingdom, conducted a three-month, large-scale public consultation, which resulted in a published report that included data gathered during the consultation, for use in policy formulation. The consultation process involved offering members of the public balanced, accessible information about the technology, including a small educational booklet. As well, the HFEA brought leaders in science, academia, theology, and interest groups to speak at public forums and to answer questions. After all of these efforts, the HFEA decided to grant licenses to researchers interested in creating human admixed embryos, so long as the researchers could demonstrate that the embryos were “necessary and desirable.” The HFEA granted two licenses to King’s College London and Newcastle University to study admixed embryos. However, the attractiveness of the research as an alternative source of stem cells decreased in light of iPS cells.

In contrast, the Bush bioethics council published tomes that discuss issues firmly rooted in the academic weeds as a starting point for public education (e.g., as mentioned above, the difference between therapy and enhancement and the role of human dignity in bioethics). Certainly, these efforts are commendable, and might have enlivened some academic debates, but they do not engage the public en masse.

After the administration clarifies the role of the next commission, its membership needs to be tailored to fulfill its mission. The last was a who’s-who of right-leaning bioethicists, along with some scientists. The next commission might choose to recruit a more diverse membership of both distinguished right- and left-leaning bioethicists, as well as scientists, theologians, practicing physicians, and a few members of the public. Doing so will enable the new commission to make decisions based on the best available evidence, scholarship, and public sentiment. Diversity of membership also tends to yield a diversity of views and approaches to addressing dilemmas, essential to confronting increasingly complicated issues.

Finally, if the new commission chooses public engagement as one of its goals, it should harness new technologies to garner public interest and to enliven public debate, including social media tools such as Twitter, Facebook, MySpace, email outreach, blogs, podcasts, YouTube, and other outlets used daily by members of the public.

If the new commission hopes to craft policy for the president and for various governmental agencies, it will need to take notice of the proverb “easier said than done.” As James Fossett and Michelle Meyer point out in a recent Bioethics Forum article:

Bioethical policy in this country is typically made in a decentralized, market-driven fashion in which state legislatures and courts, professional societies, insurance companies, and individual patients and providers are major players.

If the commission gathers data, considers public sentiment and through careful analysis offers balanced, thoughtful reports and policy recommendations, it could become a major player in policymaking by informing decision makers, stakeholders, and constituents. And this may be the best role for a president’s commission hoping to play a role in crafting policy.

Another possible role for the new commission in a globalized world, Fossett and Meyer explain, is “attending to international law and policy, and there is a clear role for a federal commission to play in this regard.” The new commission might choose to partner with similar bodies to accomplish this goal, or it might choose to assist the current work by the United Nations’ Bioethics Programme.

Finally, the commission should consider its role in academic conversations. If the council wants to be a subject of discussion because of its actions, it might be best to proceed by informing the public, working with foreign nations, and offering “practical policy options.” However, if the commission chooses to directly participate in academic bioethical discourse by publishing in journals or writing about philosophical nuances, which are important, it should structure itself appropriately.

A “data-driven” council

To go beyond the culture wars, the new bioethics commission needs to engage in “data-driven” or “question-driven” inquiry, rather than “ideology-driven” inquiry. Consider how the process of thinking about stem cell research ethics operates in each approach.

Proceeding from ideology-driven inquiry entails starting from an answer: “Research on human embryonic stem cell should be forbidden because embryos are equivalent to human lives” and working backwards to a question: “Is research on human embryonic stem cells ethical?” Proceeding with data-driven inquiry means starting with the question: “Is embryonic stem cell research ethical?” and then taking the time to educate the public, gather information about public sentiment on the topic, carefully analyze the costs and benefits of proceeding with or prohibiting the research, and offering a pragmatic recommendation that takes all of these considerations into account.

Recognizing the need for fast decision making in rapidly advancing scientific fields, at the minimum, data-driven inquiry entails considering the best available evidence before making decisions. Considering the delays in research that the Bush administration’s moratorium on human embryonic stem cell research and ideology-driven inquiry caused, a bit of time lost in the more pragmatic data-gathering process is a small cost.

Fossett and Meyer also argue the council might consider empirical analysis one of its main goals, like analyzing the effectiveness and outcomes of various local, state, national, and international bioethical policies. Offering analysis of the outcomes of these policies could aid policymakers in the United States in making better-informed decisions, in crafting policy that avoids mistakes of the past, and in offering the most pragmatic recommendations.

Rules of the road

From potential disease treatments derived from human embryonic stem cells to pre-implantation genetic diagnosis, the 21st century already presents us with unparalleled biotechnological power. But with these technologies comes the risk of misuse, and we need regulation based on the best available science, data, and public opinion. As renowned futurologist James Martin explains,

You should think then of the 21st century as taking us though a driving test and then establishing a Highway Code so that we can be reasonably safe with the forces of technology and globalism we are unleashing.[9]

Will we establish an appropriate Highway Code that permits scientific progress while ensuring that we do not harm ourselves? Of course, our future depends on it. And establishing a new bioethics commission is an excellent step in that direction.

Michael Peroski is a student at Allegheny College and a former intern with the Progressive Bioethics initiative at CAP, where he co-authored the report “A Life Sciences Crucible: Stem Cell Research and Innovation Done Responsibly and Ethically.”

Endnotes

[1] For a detailed discussion of the culture wars as they affect bioethics, see: Fox, R., C., Swazey, J., P., Observing Bioethics (New York: Oxford University Press, 2008).

[2] The source of this historical chronology is: http://bioethics.gov/reports/past_commissions/index.html. The President’s Council of Bioethics repackaged this information, with permission, from: Poland, S.C. (1998). “Bioethics Commissions: Town Meetings with a ‘Blue, Blue Ribbon.’” Kennedy Institute of Ethics Journal, [Scope Note 34], March; 8(1):91-109.

[3] Although the first formally established bioethics commission came into existence in 1974, several panels, which debated how to address unethical, secret government experiments in the 1950s and 1960s, are its precursors. For a more complete discussion of these precursors see: Moreno, J.D., Undue Risk (New York: Routledge, 2001).

[4] Moreno, J.D., “The End of the Great Bioethics Compromise,” The Hastings Center Report, Jan-Feb (2005); 35 (1): 14-15.

[5] Moreno, 2005.

[6] President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. (1983). Summing Up: The Ethical and Legal Problems in Medicine and Biomedical and Behavioral Research.

[7] Callahan, D., “Bioethics and Culture Wars,” Cambridge Quarterly of Healthcare Ethics, (2005) 14, 424-431.

[8] The source of the assertion that the council became less “activist” under Dr. Pellegrino’s direction is: Fox, R., C., Swazey, J.P., Observing Bioethics (New York: Oxford University Press, 2008).

[9] Martin, J., The Meaning of the 21st Century: A Vital Blueprint for Ensuring our Future (London: Eden Project Books, 2006).

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