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Society's Choices: Social and Ethical Decision Making in Biomedicine (1995)

Chapter: Bioethics Commissions: What Can We Learn from Past Successes and Failures?

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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

Bioethics Commissions: What Can We Learn from Past Successes and Failures?

BRADFORD H. GRAY, Ph.D.

Professor, Institution for Social and Policy Studies, Yale University

Who will live and who will die? Who decides, and on what grounds? Are there certain characteristics-when "defining" life or setting the boundaries of permissible genetic experimentation-that are essential for "humanness"? In distributing risks and benefits, when should choices be left to the consciences of individuals and when should they be constrained collectively-by expert or lay groups, legislators, administrators, or judges? [From Summing Up (1983), the final report of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.]

Developments in biomedical and behavioral research, and changes in medical practice and the health care system, have raised many challenging ethical and policy problems in recent decades. Policymakers, the courts, scientists, medical practitioners, patients and their families, and the public at large have been presented with new dilemmas (and new versions of old problems) that involve conflicts between deeply held values. When faced with problems that involve such conflicts, factual disputes, or complicated technical issues, policymakers often create commissions (or turn to commission-like bodies at the Office of Technology Assessment and the Institute of Medicine) for advice.

The question of whether a new bioethics commission is needed is again on the policy agenda. The Office of Technology Assessment is nearing completion of a new report to Congress called "Biomedical Ethics in U.S. Public Policy." The Institute of Medicine's Committee on Social and Ethical Impacts of Developments in Biomedicine is also considering the question.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 1 Reports of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research

National Commission Reports

President's Commission Reports

Research on the Fetus, 1975

Defining Death, 1981

Protecting Human Subjects, 1981

Research Involving Prisoners, 1976

Compensating for Research Injuries, 1982

Research Involving Children, 1977

Making Health Care Decisions, 1982

Psychosurgery, 1977

Whistleblowing in Biomedical Research, 1982

Disclosure of Research Information Under the Freedom of Information Act, 1977

Deciding to Forego Life-Sustaining Treatment, 1983

Research Involving Those Institutionalized as Mentally Infirm, 1978

Implementing Human Research Regulations, 1983

Institutional Review Boards, 1978

Screening and Counseling For Genetic Conditions, 1983

The Belmont Report, 1978

Securing Access to Health Care, 1983

Ethical Guidelines for the Delivery of Health Services by DHEW, 1978

Splicing Life, 1983

The Special Study (Implications of Advances in Biomedical and Behavioral Research), 1978

Summing Up, 1983

This paper is written at the request of the IOM committee, which asked for an analysis of the lessons to be learned from the experience of two earlier commissions that are both generally cited as successes 1--The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (the National Commission) and the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (the President's Commission). The National Commission issued ten reports between 1975 and 1978; the President's Commission also issued ten reports (plus a summary report) between 1981 and 1983. (These reports are listed in Table 1.) This paper will explore the senses in which these two commissions were successful and the reasons behind their successes and failures.

WHAT MAKES A COMMISSION SUCCESSFUL?

The question of what makes a commission successful is far from straightforward. 2 A report that helps to break a policy impasse may be viewed as successful by advocates of one policy option and as a disaster by

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

their opponents. Contemplating the same report, a philosopher or legal scholar might judge its success largely by the intellectual quality and rigor of its analysis, a matter that is distinct from its success as a political document. (Defining Death by the President's Commission is a case in point, having had a widespread impact on state laws while leaving some philosophers unsatisfied.) Although it is certainly fair to judge a report by the quality and weight of the evidence it assembles and logic of its analysis, a commission's influence may depend as much or more on its prestige3 and the skill with which it attends to political considerations.

Even a report whose conclusions or recommendations are rejected in the political process might be considered a success if it becomes the starting point for future discussions of the topic. In terms of its legislative impact, the Commission on the Cost of Medical Care in 1930 failed. Nevertheless, its work is discussed in health policy circles to this day. (Indeed, its final report, Medical Care for the American People [1932], is still in print.) This suggests that the evaluation of a commission's success may depend not only on the criteria that one applies, but also upon one's time horizon. One report's "success" in resolving an issue may prove to be quite temporary, while another report's significance may grow over time.

None of this should be surprising. After all, commissions are established under many auspices for a great diversity of purposes-to marshal facts to explain an event, to assess the evidence on a controversial topic, to call attention to (or increase understanding of) a problem, to clarify policy options and make recommendations for action, or to substitute for action when politicians need to do something but cannot agree upon what. A commission may be created either to play up or play down an issue. All of these considerations create perplexing problems for the evaluator of "success." At the very least they suggest that different criteria might be applied to different commissions and to different reports.

THE TWO ETHICS COMMISSIONS

Table 2 summarizes the similarities and differences between the National Commission (1975-1978) and the President's Commission (1980-1983). Both were established legislatively to deal with ethical issues in research. Both sets of commissioners were selected through a process that reflected both substantive and political considerations. Appointees did not necessarily have expertise in the matters assigned to the commission, although some certainly did, and many had connections with key politicians.4 Whether or not this is desirable-arguments can be made either way-it is probably inevitable, since officials responsible for appointments may pick particular individuals either as an expression of appreciation or respect or because their views on the issues are seen as congenial.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 2 Key differences between the National Commission and the President's Commission

National Commission

President's Commission

Was the first bioethics commission

Had National Commission as a model

Research involving human subjects was core mandate, but several other topics were involved

Research involving human subjects was one of several major responsibilities; commission had a more diverse mandate than the National Commission and had power to add topics to it

Eleven members appointed by Secretary, DHEW; law required them to be "to be distinguished in the fields of medicine, law, physical, behavioral and social science, philosophy, humanities, health administration, government, and public affairs," with five (and nor more than five) engaged in biomedical or behavioral research involving human subjects

Eleven members appointed by President; all to be distinguished-three in biomedical or behavioral research; three ethics, in medicine or provision of health care; and five in ethics, theology, law, natural sciences, the social sciences, the humanities, health administration, government, and public affairs

Members served for life or commission; except for loss of two commissioners through death, no membership charges occurred

Commissioners appointed to two-, three-, or four-year terms, complications of changing commission membership; a total of 21 commissioners served

Located at NIH; archived independent by discharging initial Executive Director, an NIH official

Independent agency

Budget negotiations internal to NIH, but budget limitations were not problematic and did not jeopardize commission's independence (though the potential was present)

Had annual budget authorization of $5 million; was subject to budget negotiations with OMB and through the congressional appropriations process; potential threat to commission's independence did not become a problem; total expenditures were less than $4 million

Staff directory / initial staff selected by NIH official

Staff director selected by commission chair and hired other staff

Staff director served primarily management and quality-control functions

Staff director was key intellectual leader of the enterprise and primary author of several reports

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

National Commission

President's Commission

Issued homely self-published reports available from the commission

Issued professionally designed, glossy reports through the U.S. Government Printing Office

Most staff did not begin as specialists in ethics

Many staff defined bioethics as their primary professional activity before working for the commission

Most staff served for the life of the commission and participated, to a greater or lesser extent, in the entire mandate (though most were identified primarily with particular topics)

Many staff worked only on particular reports and had little or no involvement with others

Commission created for 24 months, later extended by one year

Commission created for four years, later extended by three months

There were other similarities in the two commissions. The professional mix of commissioners was specified legislatively and included scientists, ethicists, lawyers, and others. Commissioners maintained their regular positions outside of government, while attending regular (usually monthly) commission meetings. Both commissions had full-time staffs, which prepared background materials and drafted reports, under the guidance of the commissions. Both staffs were headed by lawyers. In both instances the staff was a combination of full-time employees (some were long-term federal employees; others were hired from the outside), part-time employees, and consultants. Some staffers worked on numerous reports; others were specialized. In the aggregate, the commissioners and staff represented a complex mix of bureaucratic savvy, interest in law and ethics, concern to reform or defend the status quo, and political and academic values.

Both commissions held hearings, commissioned many papers, and sponsored major empirical studies.5 Both were covered regularly by major newspapers and the trade press, and both issued ten reports, though the President's Commission also issued a very useful summary report.

The fact that each commission issued many reports provides an opportunity to understand better the complicated nature of commission success. As we will see, neither commission was uniformly successful across all of its reports.

There were also many differences between the two commissions. These differences pertained to the crucially important matters of mandate and the role of commissioners and staff.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×
The Commissions' Mandates

The National Commission's core focus was clearly on ethical issues in research involving human subjects. It was directed to issue reports on four types of subject populations (the fetus, children, the institutionalized mentally infirm, and prisoners), on institutional review boards that review the ethical acceptability of proposed research, and on the basic ethical principles that should underlie research involving human subjects. However, the National Commission was also asked to report on several other topics: psychosurgery, ethical issues in DHEW-supported health services programs, and the applicability of the Freedom of Information Act to research proposals submitted to NIH. Finally, the commission's mandate included Senator Walter Mondale's idea for a "Special Study" of the implications of new developments in biomedical and behavioral research.

The President's Commission had a more diverse mandate, which eventually included almost every burning bioethical issue (except abortion itself) on the policy horizon. Certain topics were assigned to the commission by the legislation that created it: informed consent in research and medicine, the definition of death (particularly for patients whose brain function had ceased but whose other major organ systems were still operating, often with mechanical assistance), genetic testing and counseling, differences in access to health services, and issues of privacy in research and medicine. It was also directed to report biennially on the adequacy of federal policies (and their implementation) for protection of human subjects. In addition, the authorizing statute gave the commission the mandate to "undertake an investigation or study of any other appropriate matter which relates to medicine or biomedical or behavioral research ... and which is consistent with the purposes of [the legislation]." As a result, the commission studied and issued reports on genetic engineering in humans (at the request of the White House), compensation for injuries to research subjects, and decision making for terminally-ill patients and seriously defective newborns. Significantly, as we shall see, this last topic, undertaken on the commission's own initiative, became the commission's most successful report.

The Roles of Commissioners and Staff

The commissions also differed with regard to bureaucratic location, who appointed the commissioners, and the ways the chairs and staff were selected. These differences, in turn, help account for some more subtle differences in the functioning of the two bodies. Both of these commissions issued reports that were innovative, well-documented, carefully argued, persuasive, and influential. But the relative strengths of the mem-

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

bership and staff of the two commissions were quite different from each other. The strength of the National Commission lay in its membership and chair. The President's Commission's strength lay in its staff.

The difference between the commissions was not a simple matter of credentials and intellectual strengths of their members. Like the National Commission, the President's Commission had distinguished members, particularly the original set of appointees. The differences lay in other areas.

The National Commission's membership strength came from several factors. The first was its commitment and continuity. The commission had the same membership, except for the death of two members who were not replaced, throughout its existence. With its first report-on fetal research-due four months after the members were installed, the National Commission established a pattern of meeting monthly on a Friday and Saturday. Under time pressure and with considerable attention from national media and trade publications (meetings were public), the commissioners struggled intensively to find ways to reconcile their differences, particularly their deep moral division over the abortion issue. They held hearings, commissioned and discussed background papers, and had extended, passionate deliberations.

The divisiveness of the issues and the differences between the commissioners-not only regarding abortion but also in their professional backgrounds (ranging from the chairman of obstetrics/gynecology at Harvard, Kenneth Ryan, to deeply anti-abortion law professor, David Louisell) could have destroyed the possibility of respectful working relations among the commissioners. The chemistry worked in another way, however, and the pattern was established of members taking each other's views very seriously and seeking common ground on which to base recommendations. (Also contributing to the working relationships among commissioners and staff was a practice, established at the very beginning, of a social occasion or dinner on the Friday night of the commission's two-day meeting. Bonds and a group history developed that would be hard to match.)

One other early development in the National Commission's life set the tone for the relative roles of the commission itself and its staff. Under the legislation that created the commission-the National Research Act of 1974-members were appointed by the Secretary of Health, Education, and Welfare and the commission was located administratively in the National Institutes of Health, even though several of the topics assigned to the commission fell outside of NIH's jurisdiction. NIH appointed Charles U. Lowe, M.D., a career employee, as executive director, and he hired the staff director and staff, which included two members of his own staff. Lowe took an active role in managing the work of the staff and the perception grew that there was a conflict between his role as an NIH official and the commission's need to independently examine ethical issues in NIH-spon-

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

sored research. The tensions grew quickly in the first few months of the commission's life and culminated in the commission's decision to request Dr. Lowe's resignation.

These events dispelled any doubt regarding whether the enterprise belonged to the commission or the staff, and left the staff in the hands of staff director Michael Yesley, a career government lawyer who had been hired from the Department of Commerce. Yesley devoted himself to making sure that the staff was doing what the commission wanted. An important, regular staff responsibility was to convert the commission's discussions into draft material-the meeting transcripts that arrived in the staff office a few days after the meeting were reviewed very closely for guidance-that would be mailed ten days before the next monthly meeting. (The staff also engaged in many other activities, such as commissioning background papers requested by the commission, organizing hearings and site visits, and planning and overseeing empirical research in support of the commission's deliberations.)

All of this contrasted with the President's Commission. The President's Commission experienced enormous turnover of membership. Two of its initial 11 members had to be replaced during the first year because the enabling legislation did not allow federal employees to be members, and another was replaced the next year. Then, in 1992, eight of 11 commissioners were replaced in the last year of the commission's life as a result of the law's provision for a rotating membership and the election of Ronald Reagan. Thus, while a total of 11 individuals served on the 11-member National Commission, 21 individuals served on the 11-member President's Commission. Only three members of the President's Commission, including its chairman, served throughout the commission's life.

The President's Commission had no experiences parallel to the National Commission's intensive first few months on the topic of fetal research (the President's Commission's first report, Defining Death, was issued two years after the commission was appointed) or the National Commission's frequent social occasions. As one staffer noted, there was never a ''family" feeling within the President's Commission.

There were also leadership contrasts. The National Commission's chair, Kenneth Ryan, M.D., was elected chair by the commission itself at its first meeting. He was the commission's own designated leader. As a physician and researcher from a prestigious institution (chairman of obstetrics/gynecology at Harvard Medical School and chief of staff at Boston Hospital for Women), he was able to speak with authority on the core topics in the commission's mandate. Ryan had extensive experience with many of the issues considered by the commission and was the clear leader of the entire enterprise through the commission's life.

By contrast, the chair of the President's Commission was appointed.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

Although Morris Abram's appointment by the President unquestionably carried enormous prestige, it was understood that the appointment was a reflection of President Carter's gratitude for Abram's role in Carter's election. Abram's most pertinent experiences were as a patient who had received experimental treatments for a potentially fatal disease. Although this was valuable on certain topics (particularly those addressed in the report Making Health Care Decisions), Abram was essentially an informed layperson on most of the issues addressed by the commission. Perhaps in recognition of this, he selected a staff director, Alexander Capron, who was a nationally recognized expert on legal and ethical issues in medicine and science and who had published books and articles on many of the topics that were taken up by the commission. Abram worked closely with Capron for guidance about how the commission should address the issues on its agenda and was relatively distant from both the staff and other members of the commission. Capron, in turn, hired a strong staff made up primarily of professionals who had made career commitments (in law, philosophy, sociology, and medicine) to the issues on the commission's agenda. Individually and as a group, the President's Commission's staff probably had stronger professional credentials than did the commission itself.

So, the National Commission's staff was dominated by career governmental employees for whom the staff role was already familiar. The President's Commission staff was dominated by people from outside of government who identified primarily with their fields of professional activity and disciplinary work. As was evident in my survey in 1993, they continue to evaluate the President's Commission's reports primarily in terms of its scholarly quality. The National Commission was clearly more interested in finding a set of recommendations that they could agree upon than in laying out a rigorous line of reasoning regarding how they got there.

METHODS OF THIS INQUIRY

What does it mean when the National Commission and the President's Commission are said to have been successful? And how and why did this success vary across their various reports? I approached these questions by using objective measures of influence as well as seeking the views of former members and staff of the two commissions. For each commission, the major variable across reports was the topics themselves.6 I sought lessons about the success of these two commissions by seeking to understand the differences in impact from report to report.

Two methods were used. The first involved searches of on-line databases (Nexis, Lexis, and Medline) for citations to the reports of each commission. The second involved a survey of former members and staffers of the two commissions to obtain their assessments of their work and of differ-

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

ences in the success of the reports issued by their commission. (I should note that I served on the staff of the National Commission and was a long-term consultant to the President's Commission. My views about the two commissions and their reports are not among those reported later in this paper, but my experiences no doubt influence my interpretations.)

Citations to Commission Reports

In April and May of 1993, searches were done of pertinent databases for citations to the two commissions and their reports. Table 3 shows citations to both commissions in the news media covered in the Nexis online service. Table 3A shows cites to the two commissions in the National Library of Medicine's Bioethicsline database. It shows a similar number of cites for the two commissions. Tables 4, 5, and 6 respectively, show citations to each National Commission report in court cases and the Federal Register,7 medical journals (including the ethics journals included in the National Library of Medicine's Medline database), and law reviews. Tables 7, 8, and 9 have similar tables for the President's Commission's reports. Unlike the Nexis and legal databases, the Medline data base does not contain the full text of articles; the searches reported in Tables 5 and 8 report only mentions of the two commissions in the titles or abstracts of articles, not in the text or footnotes of the articles. Thus, the data provide

TABLE 3 Number of Citations in News Database (Nexis Omni) to the Two Commissions, Through 1992

National Commission: 57

President's Commission: 238

NOTE: The impact of the National Commission is substantially undercounted here because this database did not exist until five years after the National Commission began. These data are presented for information only.

TABLE 3A Citations to Both Commissions in National Library of Medicine's BIOETHICSLINE Database, Through 1992

 

News and Scholarly Articles and Books

All Citations*

National Commission

177

234

President's Commission

171

214

*Includes such items as commission reports and publications, meeting transcripts, and Federal Register notices of proposed and final regulations.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 4 Citations to the National Commission in Court Cases (Lexis— GenFed Mega search) and in the Federal Register (Lexis—GenFed Allreg search), 1981-1992

Name of Report

Cities in Court Cases

Cities in Federal Register (regulations)

Total

Research on Fetus

3

 

3

Research Involving Prisoners

 

6

6

Research Involving Children

 

1

1

Psychosurgery

 

1

1

Disclosure of Research Information Under Freedom of Information Act

1

 

1

Research Involving Institutionalized Mentally Infirm

 

 

 

Institutional Review Boards

 

4

4

The Belmont Report

 

2

2

Ethical Guidelines for Delivery of Health Services by DHEW

 

 

 

The Special Study on Implications of Advances in Biomedical and Behavioral Research

 

 

 

Swine Flu Consent Review*

6

 

6

Cites to the commission itself

1

 

1

Total

11

14

23

NOTE: The Lexis data base does not begin until 1981, three years after the last National Commission Report was issued.

* Under the legislation that indemnified manufacturers of swine flu vaccine in 1976, the commission reviewed the consent forms prepared by the Centers for Disease Control for the Swine Flu Program. This activity did not result in a published report.

an indication of the relative frequency of articles about reports of the two commissions, but this approach is far from a full measure of the impact of these reports on the scholarly and scientific literature.

A further caveat about these tables is needed. Except for the Bioethics line (Table 3A), these tables should not be interpreted as comparing the two commissions' impact. The other databases did not come into existence until several years after the National Commission's reports were issued and so do not capture the initial responses to the National Commission's work. This is important because commission reports generally receive the most intense attention while reports are being prepared and immediately after publication. The value of these tables is in the comparison across each commission's reports. The data in the tables are a much more complete indicator of the President's Commission's impact than the National Commission's. Even so,

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 5 Citations to National Commission in Medical Journal Databases (Lexis-GenMed-and National Library of Medicine's Medline)*

Name of Report

1975-1989

1990-Present

Total

Research on Fetus

7

 

7

Research Involving Prisoners

2

 

2

Research Involving Children

6

1

7

Psychosurgery

3

 

3

Disclosure of Research Information Under Freedom of Information Act

 

 

 

Research Involving Institutionalized Mentally Infirm

4

 

4

Institutional Review Boards

6

 

6

The Belmont Report

11

3

14

Ethical Guidelines for Delivery of Health Services by DHEW

 

 

 

The Special Study on Implications of Advances in Biomedical and Behavioral Research

 

 

 

Cites to the commission itself

12

1

13

Commission cited as identified of an individual

2

 

2

Total

53

5

58

*Possible duplicate cites to particular articles have not been eliminated. Federal Register cites have been removed. These databases include the Hastings Center Report, where many of the cites appear.

the tables do not convey the full impact of even the President's Commission's reports; for example, state legislation is not covered, an omission that particularly understates the influence of the President's Commission's report Defining Death, which had a widespread impact on state law.

Cites to National Commission Reports

Table 4 shows cites in the courts and in regulatory activity. Much of the regulatory activity involving National Commission reports was over by the time the Lexis service began coverage of the Federal Register. There had already been considerable activity regarding Research on the Fetus, Research Involving Children, Research Involving Those Institutionalized as Mentally Infirm (proposed regulations that were never adopted), and Institutional Review Boards. Table 4 really shows the end of a substantial period of activity. Research on the Fetus was cited in a handful of court cases in the 1980s, but,

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

ironically, the most frequent court reference to the National Commission was on a topic that it did not do a report on at all-the swine flu program.8

In medical journals (Table 5), the most frequently cited National Commission reports are The Belmont Report (on the ethical principles that should underlie research involving human subjects), Research on the Fetus, Children, Institutional Review Boards, Those Institutionalized as Mentally Infirm, Psychosurgery, and Research Involving Prisoners, in that order. The other three reports were not cited.

Law review citations (Table 6) were concentrated on Research on the Fetus and the Belmont Report, with Children, Prisoners, and Psychosurgery each being cited once or twice. The other five reports were not cited in the law review literature.

In sum, the citation data suggest that the most influential reports of the National Commission were Research on the Fetus and The Belmont Report, with Children, Institutional Review Boards, the Mentally Infirm, Prisoners, and Psychosurgery following in roughly that order. Three reports appeared to have been completely ignored-they "sank like a rock," in the words of a former staff member. They were Disclosure of Information under the Freedom of Information Act, Ethical Guidelines for the Delivery of Services by the Department of

TABLE 6 Law Review Citations to National Commission Reports, 1981 to Present (Lexis-Lawrev search)

Name of Report

1981-1989

1990-Present

Total

Research on Fetus

10

4

14

Research Involving Prisoners

2

 

2

Research Involving Children

1

1

2

Psychosurgery

1

 

1

Disclosure of Research Information Under Freedom of Information Act

 

 

 

Research Involving Institutionalized Mentally Infirm

1

 

 

Institutional Review Boards

 

 

 

The Belmont Report

5

4

9

Ethical Guidelines for Delivery of Health Services by DHEW

 

 

 

The Special Study on Implications of Advances in Biomedical and Behavioral Research

 

 

 

Cites to the commission itself

2

 

2

Commission cited as identified of an individual

2

 

2

Total

24

9

33

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

Health, Education and Welfare, and The Special Study: Implications of Advances in Biomedical and Behavioral Research.

Cites to President's Commission Reports

The number of citations to President's Commission reports was much larger in both the mass media (Table 3) and in the courts and scholarly literature (in part because of the dates covered by the database, as discussed above). However, variation across reports appears again, in even more pronounced fashion. Deciding to Forego Life-Sustaining Treatment was the most frequently cited report in the courts (Table 7), including three Supreme Court citations9 and many other prominent cases. Defining Death and Making Health Care Decisions were also used in several cases. (The main impact of Defining Death was on state laws.) The other seven President's Commission reports were cited only once or not at all in a court case.

Cites in the Federal Register (Table 7) were concentrated on one report-Protecting Human Subjects (1981)-and stemmed from a single commission recommendation: that there be uniform regulations for human subjects' protection across all federal agencies. (Despite this objective measure of impact, it apparently was not a matter about which the commission took much satisfaction, as indicated by their responses-presented

TABLE 7 Citations to the President's Commission in Court Cases (Lexis-GenFed Mega search) and in the Federal Register (Lexis-Genfed Allreg search), 1981-1993

Name of Report

Cities in Court Cases

Cities in Federal Register (regulations)

Total

Defining Death

7

 

7

Protecting Human Subjects

 

37

37

Compensating for Research Injuries

1

 

1

Making Health Care Decisions

7

3

10

Whistleblowing in Biomedical Research

 

 

 

Deciding to Forego Life-Sustaining Treatment

36

5

41

Implementing Human Research Regulations

 

 

 

Screening and Counseling for Genetic Conditions

1

 

1

Securing Access to Health Care

 

 

 

Splicing Life

 

11

11

Total

52

56

108

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 8 Citations to President's Commission in Medical Journal Databases (Lexis-GenMed-and National Library of Medicine's MedLine)*

Name of Report

1980-1989

1990-Present

Total

Defining Death

42

8

50

Protecting Human Subjects

2

 

2

Compensating for Research Injuries

1

 

1

Making Health Care Decisions

20

14

34

Whistleblowing in Biomedical Research

 

 

 

Deciding to Forego Life-Sustaining Treatment

72

30

105

Implementing Human Research Regulations

2

 

2

Screening and Counseling for Genetic Conditions

5

3

8

Securing Access to Health Care

10

11

21

Splicing Life

 

 

 

Summing Up

2

 

2

Cites to commission itself

7

 

7

Commission cited as identifier of individual

5

 

5

Report not identifiable

9

1

10

Total

177

67

247

*Possible duplicate cites to particular articles have not been eliminated. Federal Register cites have been removed. These databases include the Hastings Center Report, where many of the cites appear.

later-regarding the impact of their work. Protecting Human Subjects was hardly mentioned, perhaps because the recommendation in question was reached easily and involved no issues with ethical bite.) Splicing Life also appeared several times in the Federal Register as NIH established the Human Gene Therapy Subcommittee of the Recombinant DNA Advisory Committee, but most commission reports were in little or no evidence in the federal government's outlet for announcing regulatory activity.

The databases on medical journals (Table 8) showed almost 250 references to President's Commission reports. More than 40 percent were accounted for by one report, Deciding to Forego Life-Sustaining Treatment. There were also numerous cites to Defining Death, Making Health Care Decisions, and Securing Access to Health Care, with other reports cited fewer than ten times.

Deciding to Forego also accounted for 40 percent of the cites in the law review literature (Table 9). Citations thereafter were more broadly dis-

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 9 Citations to President's Commission in Law Reviews, 1983 to Present (Lexis-Allrev search)

Name of Report

1983-1989

1990-Present

Total

Defining Death

4

9

13

Protecting Human Subjects

 

 

 

Compensating for Research Injuries

1

 

1

Making Health Care Decisions

21

10

31

Whistleblowing in Biomedical Research

 

 

 

Deciding to Forego Life-Sustaining Treatment

40

31

71

Implementing Human Research Regulations

 

 

 

Screening and Counseling for Genetic Conditions

6

6

12

Securing Access to Health Care

13

9

22

Splicing Life

5

10

15

Summing Up

 

1

1

Cites to commission itself

2

 

2

Commission cited as identifier to individual

6

1

7

Report not identifiable

 

1

1

Testimony at hearings

1

 

1

Total

99

 

177

persed, with Making Health Care Decisions, Securing Access, Splicing Life, Defining Death, and Genetic Screening all having at least a dozen cites.

In sum, as with the National Commission's reports, there is striking variability in citations across President's Commission reports. Deciding to Forego Life-Sustaining Treatment is in a class by itself as an influential document, but there are also frequent citations to several other reports. Making Health Care Decisions, Defining Death, and Securing Access to Health Care were in a middle group, with Genetic Screening and Splicing Life also receiving important attention. The other four reports-Compensating for Research Injuries, Protecting Human Subjects, Implementing Human Research Regulations, and Whistleblowing in Biomedical Research-received almost no scholarly attention. Protecting Human Subjects, however, was a "citation classic" in the Federal Register.

Views of Members and Staff

To explore the reasons behind these differences in the impact of the reports of the two commissions, let us turn to the views of former members and staffers of the two bodies. In the Spring of 1993 I sent a questionnaire

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

to former members of both commissions and to professional staff members who had played a major role in drafting commission reports. I received responses from six of nine living members of the National Commission (another wrote to offer to respond orally) and from six of the seven former staff members to which questionnaires had been sent. From the President's Commission, only five of 18 former members to whom the questionnaire was sent returned it, as did nine of 12 former staffers who were surveyed. The minimal response from former members of the President's Commission is consistent with an important difference between the two commissions-the extent to which the commission, rather than the staff, took primary ownership of the process.

Some questions concerned the respondents' own involvement with the various topics addressed by their commission and their assessment of the impact of their commission's reports and the process that produced it. In this regard, they were asked first about which reports had a "critical impact on public policy in the U.S.," which ones had a "significant impact on thought in the field of bioethics," and which ones had gone "on the shelf [to] collect dust.'' Then they were asked two pages of questions about each report. These questions asked them to evaluate their commission's deliberations (how serious and contentious they were and how difficult the intellectual challenge); to evaluate their own investment in each report; to evaluate each report's success, including the ways and reasons that each report succeeded and did not succeed. They were also asked a set of fixed response questions on factors that affected each report, on different parties' interest in the topics, and on different types of impact.

In this paper, staff and members' responses are presented together; only notable differences will be mentioned. Numbers are small and not all respondents responded to all questions, so responses should be treated accordingly. Some staff did not respond to questions about reports on which they played little or no role; this increased the rate of item nonresponses. Nevertheless a reasonably clear picture emerges of how former members and staff defined success and failure of reports and their explanations for both.

Responses are shown in Table 10 (National Commission) and 11 (President's Commission). Broadly speaking, four general types of reports' success were mentioned:

  • Characteristics of the report itself-its clarity, the quality of the analysis, the information and data it contained, and so forth;

  • Impact on the broader debate and future thinking on the topic, including in the field of bioethics;

  • Impact on the behavior of researchers, physicians, or medical institutions;

  • Impact on law (judicial decisions or statutes) and regulations.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 10 Terms in which Respondents Described Various Reports of the National Commission as Having Been Successful or Unsuccessful. Open-ended Responses from Survey of Former Members and Staff of the National Commission, Spring 1993

Measures of Success

Measures of Failure

Gathered new and sometimes unexpected data

Lack of intellectual bite; boring; too bland

Exposed facts; provided information; focused debate

Broke no new ground

Provided a model of clear and logical ethical analysis (e.g. Children); clear enunciation of issues

A few point left open to multiple interpretations

Clarified issues and key matters (e.g., "therapeutic research"; differences between physicians' and researchers' roles; differentiated scientific and ethical issues)

Recommendations not supported by evidence (e.g., Prisoners)

Demythification of some issues (e.g., the nature of fetal research)

Recommendation may have been to restrictive

Provided new concepts/distinctions (e.g., consent/assent in Children)

Did not influence professional decisions

Broke new ethical ground

"Sank like a rock"

Shaped subsequent thinking

Not implemented in regulations

Impact on field of bioethics and teaching therein

Did not change public policy

Provided guidance for researchers or IRBS; influenced the affected parties

Failed to permanently resolve a disputed area of policy (e.g., Fetal Research)

Buttressed or codified an existing system (e.g., IRBS)

 

Report was understood and accepted in the research community

 

Changed practices that some commissioners disapproved of (psychosurgery; research on prisoners; nontherapeutic research on children were all cited)

 

Provided at least partial or temporary resolution for policy disputes, allowing research to proceed

 

Recommendations were implemented in regulations

 

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 11 Terms by which Reports of the President's Commission Were Described as a Success and as Having Not Succeeded. Open-ended Responses from Survey of Members and Staff of President's Commission, 1993

Terms Describing Success

Terms Describing Lack of Success

Raised awareness of significance of a problem (examples mentioned ranged from cites in the literature to Congressional hearings)

Report lacked guts (Securing Access); was too timid re medical profession (Decisions to Forego); recommendations had little "bite" (Genetic Screening)

Good data collection and new empirical information

Recommendations were indecisive (Compensating Research Injuries)

Important compilation of data on issue (e.g., Securing Access)

Report did not deal well with certain issues

Opened new avenues of discussion; framed future discussions; clarified issues; conceptual impact; provided good overview of problem

Arguments in support of certain conclusions were weak or flawed (e.g., in Defining Death)

Achieved consensus, and helped build wider consensus on complex ethical issue and provided basis on which future debate can take place

Report has been largely ignored and has had little impact on practice (Making Health Care Decisions)

Resolved some contentious issues; shaped public policy

Recommendations not implemented

Provided authoritative crystallization of work in field; provided groundwork for subsequent policymaking

 

Highly influential on professional thinking and public discourse; background effect on medical education

 

Demonstrated need for and usefulness of IRB site visits by knowledgeable people

 

Became standard citation on issue; frequent and/or continued citation

 

Became the model (the "Bible") for decision making in care of terminally ill nationally (Deciding to Forego)

 

Major impact on institutional policy; influence on consent forms

 

Impact on ethics committees

 

Major impact on law; provided rationale accepted by legislators, courts, and policy makers; highly influential on court decisions and statutory law (Deciding to Forego); accelerated statutory uniformity (Defining Death); became standard citation in law and hospital policy

 

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

The terms in which failures were described were by-and-large mirror images of these.

Although the success/failure categories were similar for the two commissions, more examples of characteristics of reports and types of impacts were mentioned by respondents from the President's Commission. This may be due to the President's Commission's broader mandate, but it may also reflect greater diversity within the staff.

The multiple dimensions of success create the possibility, already alluded to, that a report could be a success in some terms and a failure in others. We will return to this point.

WHICH REPORTS SUCCEEDED AND WHICH FAILED?

The National Commission's Reports

Based on the views of former members and staff of the National Commission, its reports can be divided into three categories-successful ones (4), partially successful ones (3), and unsuccessful ones (3). Responses to open-ended questions about which reports had an impact on public policy, which influenced the field of bioethics, and which had gone on to collect dust are shown in Table 12. Responses to questions that asked for success ratings for each individual report are shown in Table 13.

The Successes

Four reports were identified by most respondents as having had a critical impact on public policy and/or a significant impact on the field of bioethics: The Belmont Report, which identified the basic ethical principles that should underlie the conduct of research involving human subjects; Research on the Fetus and Research Involving Children, which defined the boundaries on ethically permissible research involving these two categories; and Institutional Review Boards, which examined the primary mechanism for protecting the rights and welfare of human subjects. (Although half of the respondents saw Research Involving Prisoners as having had a significant impact on public policy, they did not all agree that this impact was beneficial.) These same reports were also evaluated most favorably on the fixed-response question regarding the success of individual reports.

Interestingly, though these reports all dealt with issues at the core of the Commission's congressional mandate, they are of quite different natures. Fetus and Children defined what types of research could be ethically supported by the federal government; to reach its recommendations, commissioners had to find their way through some fundamental ethical conflicts among themselves. Belmont did not have direct regulatory applicabil-

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 12 National Commission Reports Identified as: (a) Having Had a Critical Impact on Public Policy, (b) Having Had a Significant Impact on Thought in the Field of Bioethics, and (c) Having Gone on the Shelf to Collect Dust. Open-ended Responses from Survey of Former Members and Staff of the National Commission, Spring 1993

 

Number of Respondents Offering each Assessment

Name of Report

Report Had Critical Impact on Public Policy

Report Had Significant Impact on Bioethics

Reports that Are Collecting Dust

Research on Fetus

11

2

1

Research Involving Prisoners

6

0

0

Research Involving Children

7

3

0

Psychosurgery

4

1

7

Disclosure of Research Information Under Freedom of Information Act

2

0

6

Research Involving Institutionalized Mentally Infirm

2

0

4

Institutional Review Boards

10

4

0

The Belmont Report

9

12

0

Ethical Guidelines for Delivery of Health Services by DHEW

0

0

10

The Special Study on Implications of Advances in Biomedical and Behavioral Research

0

0

8

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 13 Respondents' Evaluations of Whether Individual Reports of the National Commission Were (a) Very Successful, (b) Partially or Somewhat Successful, or (c) Largely or Wholly Unsuccessful. Fixed-response Items from Survey of Former Members and Staff of the National Commission, 1993

 

Number of Respondents Offering each Assessment

Name of Report

Very Successful

Partially Successful

Largely/Wholly Unsuccessful

No Response

Research on the Fetus

7

5

0

0

Research Involving Prisoners

5

2

0

0

Research Involving Children

9

2

0

1

Psychosurgery

1

4

4

2

Disclosure of Research Information

1

4

2

5

Research Involving Institutionalized Mentally Infirm

2

6

3

1

Institutional Review Boards

9

1

0

2

The Belmont Report

10

1

0

1

Ethical Guidelines for Health Services

1

1

4

4

Special Study

1

3

5

3

Note: One commissioner found all reports successful; one responded only to the first question. Non-responses often meant no recollection.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

ity (as did the reports on subject populations); the identification of the ethical principles that should underlie research was primarily an intellectual challenge that commissioners (and their staff and consultants) grappled with together. Institutional Review Boards evaluated an existing regulatory mechanism for protecting human subjects and made recommendations for improvements; matters of fundamental disagreements over ethics were not involved.

Descriptions of these reports' impact reflect these differences. Respondents pointed to the impact of Fetus in lifting a congressional ban on research, on regulations, and on future debate on the topic. On Children, they pointed to the regulatory impact, acceptance by the research community, and the impact on research, as well as the clarity and logic of the report's analysis. On IRBs, they cited the regulatory impact and the reinforcement of the existing system. On Belmont, they cited the report's importance in providing principles for use by IRBs and in influencing the field of bioethics. (The impact of Belmont was so substantial that some respondents were actually troubled that the three basic principles identified in the report-beneficence, respect for persons, and justice-had become an uncritically used "mantra," in the words of one respondent.)

The Mixed Cases

The reports Research Involving Those Institutionalized as Mentally Infirm, Research Involving Prisoners, and Psychosurgery were viewed in more complicated terms. Most respondents believed that these reports (with the partial exception of Prisoners) had been well done-with good evidence and ethical analyses. In addition, several respondents in each case perceived an impact on public policy; in the latter two reports, the perceived impact was primarily negative-the ending of research involving prisoners and a discouraging impact on psychosurgery. (Not all respondents agreed that these had been good policy impacts.) Several respondents saw Mentally Infirm and Psychosurgery as only gathering dust. At least half of the respondents saw both Mentally Infirm and Prisoners as at least partially successful, though only three judged Psychosurgery so favorably.

Why were these reports viewed as failures by some? The Mentally Infirm report was seen as a failure because the recommendations (which respondents still viewed as sound) were never implemented in regulations. Simply put, a report that made recommendations for regulatory change could not be deemed a success if those recommendations had largely been ignored. Some also believed the report had suffered because of the legislative mandate's focus on the institutionalized mentally infirm, which gave the report a peculiar emphasis in an era of deinstitutionalization. Moreover, the commission's administrative location in NIH seemed anomalous for

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

this topic since most funding for research on this population came from other federal agencies (particularly the National Institute of Mental Health).

Criticism of Prisoners focused largely on its lack of impact and the quality of the report (illogical, excessively paternalistic, unoriginal; a well intentioned but unrealistic attempt at prison reform). Moreover, this was also a topic of little relevance to NIH and the Public Health Service regulations for protection of human subjects, since most research involving prisoners was being financed and performed by pharmaceutical companies or by other federal agencies and were thus not subject to those regulations.

Psychosurgery was seen as a partial failure because of a lack of impact on either public policy or professional decisions. Although this topic had been included in the commission's mandate, it was nevertheless seen as having been outside the commission's primary expertise (as practice rather than research). Accordingly, some respondents believed that the commission's views were not regarded as authoritative.

The Failures

Former members and staff of the National Commission saw three of its reports as failures. (Indeed, several respondents had difficulty discussing these reports because they were gone from the memory bank.) Disclosure of Research Information dealt with whether research proposals submitted to NIH should be available to the public (including competing researchers) under the Freedom of Information Act. In Ethical Guidelines for the Delivery of Health Services by DHEW the commission attempted to apply the principles developed in The Belmont Report to health services delivery programs. In preparing The Special Study of the "Implications of Advances in Biomedical and Behavioral Research," the commission relied heavily on a Delphi study a method viewed skeptically by the staff director and several commissioners-by a contractor that had little contact with the commission. Although a thick volume was published, the commission's report made up only the first ten pages; the remainder was appendices.

A common characteristic of the failures was their periphery to the commission's core concern about the ethics of research involving human subjects. (In the view of some, this was also true of Psychosurgery because the topic was one of medical practice and therefore a matter for clinical research and medical consensus rather than for a commission concerned with research ethics.) Many respondents noted these topics' lack of centrality to the commission's mandate in explaining why these reports had not been successes. Responses to my questions about their personal investment in the various reports showed that these topics did not engage com-

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

missioners nearly as much as did the subject populations, Belmont, and IRBs. They observed that these topics were not seen as major agenda items, that the commission lacked expertise and/or moral authority regarding them, and that these topics had no direct connection with regulations and NIH's responsibilities, as did the core mandates. Even the location of the commission in NIH was seen as inappropriate by some on such topics.10

The National Commission's failures point to an important aspect of commissions. An existing study commission-or a legislative vehicle that is going to create one-tends to attract topics, much as certain types of legislation become Christmas trees for different legislators' pet projects. In some cases, topics added to a commission's legislative mandate through such processes have little to do with the rest of the commission's mandate. What happens then may depend on whether influential commissioners or key staff members take a keen interest. Topics need champions, even if assigned to a study commission by Congress or the White House.

As we shall see, some topics addressed in partly successful reports of the President's Commission were added after it was created; in each case, the topic was of great interest to the executive director and key staffers. However, in the case of the National Commission, neither commissioners nor the staff director had much interest in the topics outside of the commission's core concerns with research involving human subjects. Even the appointments to the commission reflected its core duties. Those who were responsible for appointing members of the National Commission seemed to have in mind only its responsibilities in the areas of fetal research, research involving children, and research involving the mentally infirm; none of the appointees had particular expertise or interest in the topics of the reports that became failures.

For a member-driven (as opposed to a staff-driven) commission, the lack of commissioner interest in a topic almost guarantees that any report will be cursory, superficial, and likely to gather dust. Of course, this is not necessarily incompatible with the intentions of those who assigned the topic to the commission, since this is a convenient, painless way for a legislature or agency to deal with a prickly or unwelcome topic.

The President's Commission's Reports

Like the National Commission, the President's Commission issued ten reports which its members and staff view in retrospect as of variable success.11 Based on responses shown in Tables 14 and 15, only one report can be classified as a clear success; five were partial successes; and four were dust collectors, even if not outright failures.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×
The Successes

From the perspective of 1993, the commissioners and staff members who completed my survey viewed only one report—Decisions to Forego Life- Sustaining Treatment—as an unambiguous success in terms of having both "critical impact on public policy" and "significant impact on bioethics" (Table 14), as well as having been "very successful" (Table 15). All types of success were mentioned. Regarding the report's qualities, respondents pointed to its clarity and depth, its having filled a "tremendous need'' in a sensible and thoughtful way, and its having "crystallized the most progressive mainstream thinking." As one respondent put it, "it is still an authoritative text to this day." Respondents also noted the impact on public and professional discussion and on court cases, institutional policies, professional practices, and public policy. Though several respondents criticized the report-for not being sufficiently critical of medical professionals who ignore patients' desires, or for not dealing with all issues adequately-this report seemed to have had the desired impact at all levels.

The Partial Successes

On the basis of the responses of former members and staff, five President's Commission reports could be classified as partial successes with regard to impacts on public policy and bioethics.

Defining Death was unanimously regarded as a success from one standpoint-its influence on state laws. The commission's recommended revision in the definition of death has been adopted in a majority of states. Nevertheless, there are mixed feelings about the quality of the analysis in the report. The criticisms were rooted in a basic disagreement, largely within the staff, over the analysis of alternative brain death definitions; several areas of "incoherence" or "intellectual unsoundness" were perceived. There was a sense that the executive director (and the commission) had been unwilling to deal with some valid issues and that power rather than persuasive argument had carried the day; a decade later those feelings remain strong. One former staff member said: "The executive director had clear and fixed ideas on the topic, which he sought to implement with a minimum of dispute or controversy. Staff dissent was largely suppressed." Another observed that "the commission was determined to uphold the emerging consensus, whether or not it had any theoretical basis." These criticisms of the former staffers are supported by a number of published critiques over the years.

The commission's report on informed consent, Making Health Care Decisions, was viewed by almost all respondents as having had an effect on public policy and/or on bioethics, but a majority saw it as, at most, partially

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 14 President's Commission Reports Identified as: (a) Having Had a Critical Impact on Public Policy, (b) Having Had a Significant Impact on Thought in the Field of Bioethics, and (c) Having Gone on the Shelf to Collect Dust. Open-ended Responses to Survey of Former Members and Staff of the President's Commission, Spring 1993

 

Number of Respondents Offering each Assessment

Name of Report

Report Had Critical Impact on Public Policy

Report had Significant Impact on Bioethics

Reports that Are Collecting Dust

Defining Death

13

6

0

Protecting Human Subjects

2

0

5

Compensating for Research Injuries

2

1

7

Making Health Care Decisions

6

8

1

Whistleblowing in Biomedical Research

3

1

6

Deciding to Forego Life-Sustaining Treatment

12

13

0

Implementing Human Research Regulations

3

0

5

Genetic Screening and Counseling

2

5

4

Securing Access to Health Care

4

6

4

Splicing Life

3

5

2

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 15 Respondents' Evaluations of Whether Individual President's Commission Reports Were (a) Very Successful, (b) Partially or Somewhat Successful, or (c) Largely or Wholly Unsuccessful. Fixed-response Items from Survey of Former Members and Staff of the President's Commission, 1993

 

Number of Respondents Offering each Assessment*

Name of Report

Very Successful

Partially Successful

Largely / Wholly Unsuccessful

No Response

Defining Death

9

2

0

3

Protecting Human Subjects

1

6

1

6

Compensating for Research Injuries

1

4

7

2

Making Health Care Decisions

4

7

2

1

Whistleblowing in Biomedical Research

1

2

4

7

Deciding to Forego Life-Sustaining Treatment

12

1

0

1

Implementing Human Research Regulations

2

5

1

6

Screening and Counseling for Genetic Counseling

1

7

1

5

Securing Access to Health Care

1

7

3

3

Splicing Life

2

4

2

6

*The number of nonresponses in President's Commission is due in part to commission member and staff turnover and staff specialization. Many non-respondent's had no involvement with some particular reports.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

successful. The positive assessments focused on the report's quality-its "lucid, constructive analysis" and the survey research results it included and its value as an educational document. But the perception of most respondents was that the report had had little or no impact on professional practice ("Doctors don't take informed consent seriously and no amount of writing, however good, makes any difference"), and no one cited any specific public policy impact.

The other three partial successes—Securing Access to Health Care, Splicing Life, and Screening and Counseling for Genetic Disorders—followed a similar pattern. In each case, several respondents saw the report as having had a significant impact on bioethics and, in the case of Securing Access, on public discourse. But most respondents perceived little or no public policy impact.

Securing Access was praised for the data it brought together on the uninsured and for articulating what became an influential ethical argument about the access issue (stated in terms of societal obligations rather than individual rights). But some were critical of the report, feeling that it had been watered down at the insistence of the conservative Reagan-appointed commissioners, and several noted the report's lack of impact on public policy.

Splicing Life was also seen as a clear, careful, and thoughtful report that had included good material, been the subject of a Senate hearing, influenced public debate, and helped lead to the establishment of the Human Gene Therapy Subcommittee of the NIH Recombinant DNA Advisory Committee. But some respondents thought that the overall tone was perhaps too "soothing" with regard to the implications of the issues that it addressed. The main impact that most respondents cited was intellectual.

Screening and Counseling was praised for its characterization of the issues, for providing a good overview, for its foresightedness and comprehensiveness, and for having avoided the "abortion quagmire." But there was little sense that the report had had any substantial public policy impact, though the report has been rediscovered to some extent in recent years owing to developments in genetic screening for cystic fibrosis.

The Dust Collectors

Four reports of the President's Commission were seen by most respondents as having had little effect on public policy or on the field of bioethics and as having gone on the shelf to collect dust. These were the three reports on research with human subjects-the two biennial reports that were part of the commission's mandated oversight function, and the report on Compensating for Research Injuries—and the report on Whistle-Blowing.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

The perceived lack of effects of the two biennial reports—Implementing Human Subjects Regulations and Protecting Human Subjects—may have been partly due to some respondents' inability to distinguish between them in attempting to respond to the questionnaire. Moreover, staff who had been close to these reports were aware of regulatory impacts that were largely invisible to nonspecialists.

These two reports also reveal a further complexity in trying to assess the impact of a commission, because the mandated task that led to these reports was distinctive. The National Commission had already made recommendations for protecting human subjects, and these had been partly incorporated into DHHS regulations. The President's Commission was directed to monitor the situation and to report biennially. The heart of the first report was the recommendation for uniform regulations across all government agencies. As was noted earlier, this recommendation was in fact adopted by the federal government over the course of the next decade. So this report clearly had a regulatory impact, though not of the sort to excite persons who were intellectually engaged with the dilemmas of bioethics. The heart of the second report, issued with little publicity at the end of the commission's existence, was whether (and how) federal agencies could know whether institutions were actually implementing the regulations in ways that would protect human subjects. Whatever impact this report might have had was not visible to the members and staff who responded to my questionnaire.

Compensating for Research Injuries was seen as a failure because its only purpose was a public policy change, and none occurred. The report itself was praised for the thoroughness and ethical sophistication of the analysis (although the final recommendations were seen as "indecisive" by some). But the recommendations were not adopted by the Department of Health and Human Services, in part because the problem was not as serious as had been thought (i.e., few research injuries were identified) and in part because of opposition from the "research establishment."

The final report, Whistleblowing in Biomedical Research, was the summary of a conference that was jointly sponsored by the commission, rather than a full-fledged commission report. The case could be made that this report cannot be fairly judged on the same scale as the reports on which commissioners argued, and staffers wrote and revised, over the course of several meetings. The fact that only a few respondents perceived an impact is probably not surprising, although some noted that the report had opened a topic that has become more important in subsequent years.

In sum, respondents agreed that only two reports, Defining Death and Decisions to Forego, had a critical impact on public policy, and several mentioned Making Health Care Decisions in this regard. More reports were given credit for a significant impact on the field of bioethics. At least five respon-

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

dents saw six reports as having had this effect—Defining Death, Deciding to Forego, Making Health Care Decisions, Securing Access to Health Care, Genetic Screening and Counseling, and Splicing Life. Most respondents thought the description of sitting on shelves and collecting dust applied to the other four reports—Compensating for Research Injuries, Protecting Human Subjects, Implementing Human Research Regulations, and Whistleblowing in Scientific Research. (Four respondents also put Genetic Screening and Counseling and Securing Access into this category.)

Responses to the series of questions asking for evaluations of the success of each report were consistent with these results. Only three reports were classified as "very successful" by more than two respondents—Deciding to Forego (12), Defining Death (9), and Making Health Care Decisions (4). However, in contrast to the National Commission, all of the other reports were seen by at least two respondents as at least "partially successful."

So, compared to the members and staff of the National Commission, respondents from the President's Commission saw it has having hit fewer home runs, but also as having struck out less often.

Accounting for Success and Failure
National Commission

National Commission respondents attributed reports' success to several types of factors (Table 16): the quality of the process, the efforts of members and staff in playing their roles, and the commitment to reason and to obtaining needed information. Interestingly, no one mentioned the fact that the law creating the commission required the Secretary of Health, Education, and Welfare to respond in writing to commission recommendations, including an explanation for any decisions not to implement them. (Interestingly, the absence of this factor was mentioned by President's Commission staff in explaining the lack of impact of its report, Compensating for Research Injuries. The National Commission staff may have come to take this important statutory provision for granted.)

Explanations of the National Commission's failures were more diverse and interesting: the commission's lack of expertise or authority on certain topics; the failure of politicians and bureaucrats to implement good recommendations; flaws in the commission's mandate and bureaucratic location; time constraints; conflicts between multiple goals; and some commissioners' and staff members' unwillingness to free themselves from their preconceptions. The conflict with the original executive director that was resolved by his resignation was recalled as a crucial period in establishing the commission's independence from NIH.

More information on the factors that positively or negatively influ-

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 16 Explanations Offered by Respondents to Account for the Success or Failure of Reports of the National Commission. Open-ended Responses from Survey of Former Members and Staff of the National Commission, Spring 1993

Explanations of Success

Explanation of Failure

An open honest process of debate; depth of inquiry; extensive analysis by commissioners

Some topics were outside the commission's expertise

Interest and commitment of commissioners and staff

Impact of some reports on vulnerable populations was reduced once the Belmont Report and the principles it identified were released

Commission's commitment to getting the facts and the full range of ethical opinion on topics

Commission has not authority on some topics

Reports were well-argued, based on facts, and reasonable

Subsequent interventions by politicians (e.g., Fetal research)

Commission's operating out of academic rather than political values

Subsequent poor regulation writing by DHHS (e.g., Institutionalized Mentally Infirm)

Reports were developed in a public process with press coverage; the public nature of the commission's debates

Technology or medical practice changed and left report largely irrelevant (e.g., Psychosurgery)

Leadership by the chairman

Commission's mandate was faulty (e.g., the focus on the institutionalized mentally infirm)

Was willing to allow publication of dissents rather than reach bland consensus (e.g., Fetus, Children)

The commission's location within NIH was seen as inappropriate for certain topics

Excellent staff work

Time constraints and the end of the commission

Assembly or development of pertinent information through commissioned papers, new research, and site visits

Multiple totals (encourage research and protect human subjects)

Public policy and scientific need; public interest in the topic

Commissioners or staff with ax to grind could derail debate

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

enced the National Commission's reports is shown in Tables 17 and 18. Looking across all reports, four influences stand out as having a positive impact: the composition of the commission, the role of staff, the framing of the commission's charge, and reports and papers written for the commission. The main negatives cited were time constraints, external interest (a complicated factor-there was a lack of interest in certain topics, but the main problem was the excessive external interest in the topic of psychosurgery, in which a group of activists disrupted and ended a public hearing of the commission), congressional politics, and the commission's bureaucratic location. There were also a scattering of complaints about the composition of the commission; these mostly pertained to idiosyncrasies of particular commissioners on particular topics.

President's Commission

President's Commission respondents (Table 19) explained its successes (or lack of success) in somewhat similar terms to those of respondents from the National Commission. However, the President's Commission respondents placed much more emphasis on the subject matter as an explanation of success-certain topics being of high public interest, the time being ripe for resolution of the issue, the pressing need for clarification.12 Characteristics of topics-their not being terribly important or sexy or their having already been dealt with by the National Commission-were also cited as an explanation of the lack of success of some reports.

There were also references to detrimental conflicts. Some involved the Reagan-appointed commissioners who entered the fray as the final group of reports was nearing completion. (The enabling legislation provided for a rotating membership of the commission. Ronald Reagan's election occurred during the Commission's life, and he appointed members with stronger political than substantive qualifications. Moreover, the Reagan appointees mostly had different ideological views on certain issues than did the commissioners and staff that had already done substantial work on a topic, particularly the report on access to health care.) There were also allusions to conflicts between the executive director and staff members assigned to particular topics, perhaps an inevitability when both roles are filled with people with strong credentials and, in some cases, with disciplinary differences.

More information on the factors that positively or negatively influenced the President's Commission's reports is shown in Tables 20 and 21. Looking across all reports, three factors stand out as having a major positive impact: external interest in the topic, the role of staff, and reports and papers written for the commission. What is remarkable, particularly in contrast to the National Commission, is how rarely the commission's mem-

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 17 Factors that Respondents Saw as Having a "Major Positive" Impact on National Commission Reports. Fixed-response Items from Survey of Members and Staff, 1993

 

Factors Cited as Positively Affecting each Report by any Respondent (number citing each factor)

Name of Report

Time Constraint

Budget Constraint*

External Interest

Congress Politics

White House Politics

Research on the Fetus

2

1

5

5

1

Research Involving Prisoners

 

1

1

 

 

Research Involving Children

 

 

3

 

 

Psychosurgery

 

1

1

 

 

Disclosure of Research Information

 

 

 

 

 

Research Involving Institutionalized Mentally Infirm

 

 

 

1

 

Institutional Review Boards

1

2

1

 

 

The Belmont Report

1

1

1

 

 

Ethical Guidelines for Health Services

 

 

 

 

 

Special Study

 

 

 

 

 

Total Mentions

4

6

12

6

1

* Those citing budget constraints were referring to the absence of budget constraints.

bership was mentioned as a positive factor. Looking across all ten reports it was mentioned only 14 times. (Four respondent commissioners accounted for all of these mentions.)

In terms of the negatives, two factors stand out-time constraints and the composition of the commission. The latter again reflects the political change that came with the eight Reagan appointees in 1982. (This also underlies the characterization of White House politics as a problem.) The other factor that was mentioned more than ten times was the lack of external interest in the topic, a particular problem with regard to the reports on compensating injured research subjects and the implementation of the human research regulations.

LESSONS AND CONCLUSIONS

The National Commission, because of its mandate and the composition of its membership and staff, seems to have produced narrower reports that were tightly focused on regulatory questions. The success or failure of

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

Composition of Commission

Role of Staff

Framing of Charge

Bureaucratic Location

Papers/ Studies Done for Commission

Public Hearings

6

5

6

1

9

5

1

4

2

 

4

5

6

7

3

2

7

6

3

3

2

2

5

 

 

 

 

1

1

1

4

4

2

1

3

3

4

9

3

4

9

3

7

9

5

2

8

3

 

1

1

 

 

 

 

2

1

 

 

 

31

44

25

13

47

26

such reports is closely tied to success of the recommendation in the policy process. The President's Commission had a more wide-ranging agenda, with several important topics having no specific tie to a particular policy decision. Thus, while a typical National Commission recommendation included specification of regulatory actions a particular agency should take, the President's Commission's conclusions and recommendations (Defining Death, Protecting Human Subjects, and Compensating Injured Research Subjects excepted) were aimed at a broad audience of policymakers, professionals, and the public at large. Perhaps because so many staff members were oriented toward the fields of bioethics and real-world problems, President's Commission reports had a kind of broad orientation that was found primarily only in The Belmont Report of the National Commission.

The performance of the National Commission seems to have been more uneven than the President's Commission's. Four of the National Commission's reports were viewed as successes, but three were seen as failures. None of the President's Commission reports were complete failures, but only one was seen as an unqualified success. It is difficult to know

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 18 Factors that at Least One Respondent Saw as Having a Negative Effect on National Commission Reports. Fixed-response Items from Survey of Members and Staff, 1993

 

Factors Cited as Positively Affecting each Report by any Respondent (number citing each factor)

Name of Report

Time Constraint

Budget Constraint

External Interest

Congress Politics

White House Politics

Research on the Fetus

5

 

 

4

 

Research Involving Prisoners

 

 

4

2

1

Research Involving Children

1

 

1

 

 

Psychosurgery

3

 

6

4

1

Disclosure of Research Information

3

1

2

2

 

Research Involving Institutionalized Mentally Infirm

3

 

2

2

2

Institutional Review Boards

1

 

 

 

 

The Belmont Report

 

 

 

 

 

Ethical Guidelines for Health Services

5

3

3

2

1

Special Study

4

2

2

1

1

Total Mentions

25

6

20

17

6

whether these are objective differences, since different evaluators are involved. Critics of the President's Commission may be tougher, because the experience is fresher, because there was more conflict and disagreement between staff members and the executive director and commission, and because more of the former staff members are academics who may apply scholarly, rather than policy, criteria to reports.

Even so, the commissioner-driven versus staff-driven character of the two commissions, described earlier in this paper, may explain the difference. The National Commission staff tended to take its lead from the commission itself, so a topic might be handled in a cursory way if no commissioners cared much about it. By contrast, the executive director of the President's Commission made staffing provisions for all topics, and the staff's performance reflected both on their professional credibility and on the executive director himself.

The work of a commission is a combination of three broad factors topics, commissioners, and staff.13 The experience of these two commissions, each of which issued reports that were of highly variable success, demonstrates the importance of all three factors.14 Complex relation-

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

Composition of Commission

Role of Staff

Framing of Charge

Bureaucratic Location

Papers/ Studies Done for Commission

Public Hearings

 

1

1

1

 

 

1

 

1

3

 

 

3

1

 

1

 

 

2

 

1

2

 

3

1

1

 

1

 

 

 

 

2

1

 

 

 

 

 

1

 

 

 

 

 

1

 

 

2

2

1

3

1

1

4

1

3

3

2

1

13

6

9

17

3

5

ships between these three factors have enormous implications for commission success. Many of these implications can be summarized into seven "lessons."

Lesson One

Ethics commissions can play a useful role in helping policymakers, practitioners, and the public at large deal with the value conflicts and ethical dilemmas that accompany new developments in biomedical and behavioral research and technology.

A substantial list can be made of the beneficial consequences of the work of these two commissions. (It must be acknowledged that the methods used in this project were not likely to elicit the most critical of views.) The National Commission made recommendations that enabled important research to proceed within a regulatory framework that both policymakers and the research community found acceptable. There were times when that did not seem possible. President's Commission's reports had an

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 19 Explanations Offered to Account for Success or Failure of Reports of the President's Commission. Open-ended Responses from Survey of Former Members and Staff of President's Commission, 1993

Explanations of Success

Explanation of Failure

The characteristic of the topic-with clear need for clarification and high public interest; time ripe for an authoritative analysis; an eager audience awaited it; issue susceptible to philosophical analysis

The particular problem turned out not to be serious or extensive; not a burning issue; little interest in issue

 

No natural audience for a particular report

Existence of substantial scholarly literature on topic

Report difficult to translate into action (Making Health Care Decisions)

Good background papers by consultants

Key aspects of issue had been dealt with already (i.e., by National Commission)

Involvement of legal and medical community (Defining Death); involvement of agency liaisons (Implementing Human Research Regulations)

Topic did not hold attention of commissioners (Compensating Research Injuries) because of technical difficulty and seeming lack of importance

Solid work on law, philosophy, sociology, and history of topic

Topic not sexy (Making Health Care Decisions)

Investment of time and effort; depth and quality of report; scholarly analysis; new data; strength of underlying philosophical analysis

Some arguments in staff drafts were watered down by commissioners

Hard and excellent staff work

Staff views (and intellectual rigor) suppressed because of commission's or staff director's views and desire for professional support of report and to keep report in line with emerging consensus in field (Defining Death)

Critical interaction between commission and intellectual staff; good staff diplomacy re the commission

 

Individual commissioners' contributions on certain new topics

 

Report crystallized ''progressive mainstream thinking" and took apart myths and dogmas

Commissioners generally less qualified and involved than staff

Clarity of the analysis and writing in the report

Some topics were not priorities; some reports less substantial

The grounding of difficult issues (e.g., Deciding to Forego LifeSustaining Treatment) not only in philosophical, theological, sociological, and legal terms but also in the experiences of health professionals, families, and patients

Strong language in one report (Securing Access) gutted because of changing commission membership; recommendations not specific enough

 

Report's reasoning too arcane (Compensating Research Injuries)

 

There are limits to what can be accomplished at once; competing priorities on reports

 

Acceptance or implementation was defeated by vested interests, bureaucratic resistance, or Reagan era ideology/ political climate

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

enormous effect on very difficult issues regarding the terminally ill and the definition of death. While they existed, both commissions played a valuable role in providing a focal point for work in the field of bioethics, and reports from both groups both lowered the temperature on some heated issues (research involving children, genetic screening) and became important points of reference for much subsequent scholarly work and policy debate.

Lesson Two

Design details can make an enormous difference in the performance of commissions.

Although it is difficult to draw sweeping conclusions based on two case studies, a number of aspects of the ways these commissions were designed seemed to have important consequences. These include:

  1. The creation of these bodies as governmental, rather than private entities. Governmental bodies are required to operate under sunshine laws. This was still new when the National Commission was in operation; despite initial concerns, broad agreement eventually developed that the attendance of the press and interested members of the public had a beneficial effect on the process.

  2. Appointment versus election of the chair. The National Research Act's unusual requirement that the chair of the National Commission be elected from within its membership had important, positive consequences for the leadership of the commission.

  3. Establishing rotating, overlapping terms for commissioners. These create difficult problems for a study commission that is striving to reach agreement on difficult value questions. Time-consuming conflicts on reports-in-progress can result from membership changes. The rotation of membership will also tend to increase the power of staff. It seems wiser to give a commission a life span and a mandate and to appoint a new commission (with a new mandate) at the end of that life span.

  4. Administrative location of the commission. Independence has both perceptual and substantive importance for ethics commissions. The President's Commission's existence as an independent agency had significant advantages over the National Commission's NIH location.

  5. Where ideological divisions exist, the appointment process is fraught with potential problems. This is particularly true when political control of the appointing authority changes, as with the Reagan election of 1980. That experience proved that legislative language about "distinguished" appointees or categories of expertise are subject to widely differing interpretations.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 20 Factors that Respondents Saw as Having a "Major Positive" Impact on President's Commission reports. Fixed-response Items from Survey of Members and Staff, Spring 1993

 

Factors Cited as Positively Affecting each Report by any Respondent (number citing each factor)

Name of Report

Time Constraint

Budget Constraint*

External Interest

Congress Politics

White House Politics

Defining Death

1

1

4

 

 

Protecting Human Subjects

 

 

1

 

 

Compensating for Research Injuries

 

 

2

 

 

Making Health Care Decisions

 

 

3

 

 

Whistleblowing in Biomedical Research

 

 

1

1

 

Deciding to Forego Life-Sustaining Treatment

1

1

12

 

 

Implementing Human Research Regulations

 

 

1

 

 

Screening and Counseling for Genetic Conditions

 

 

1

1

1

Securing Access to Health Care

2

2

3

1

1

Splicing Life

 

 

1

1

1

Total Mentions

4

4

29

4

9

Lesson Three

The appointment of commissions is a very complicated matter, full of trade-offs and dangers.

Clearly, trade-offs and competing considerations exist in many aspects of creating a commission and carrying out its work. Will members be appointed for their expertise or because membership is a plum to be given to acknowledge past political favors? How much does the official who is making the appointments care about the commission and its mandate? Might the official care too much about one or another possible outcome? The experience of the President's Commission shows how the process can be politicized. The combination of a rotating membership and a presidential election can be volatile. And it was not only the Reagan appointees that are the issue here; some observers looking at the commission and staff assembled under the Carter administration found the staff to be better

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

Composition of Commission

Role of Staff

Framing of Charge

Bureaucratic Location

Papers/ Studies Done for Commission

Public Hearings

 

6

2

2

4

2

1

3

3

2

1

 

 

2

 

 

1

 

4

11

3

1

9

2

 

3

 

 

4

2

3

10

4

2

7

6

1

4

3

2

3

1

3

5

1

1

3

1

1

9

2

2

7

7

1

3

1

 

2

1

14

56

19

12

41

22

qualified than the commission. Such a perception on the part of a staff makes for complicated dealings with the commission, but no one would suggest that the answer is to appoint a weaker staff. But how does one guarantee that a highly qualified commission will be appointed?

Many other trade-offs could be noted: between commissioners who bring visibility to the activity (e.g., Magic Johnson on the AIDS Commission) and those who bring substantive expertise; between recommendations designed to be adopted by policymakers and recommendations that are intellectually satisfying to rigorous thinkers; between recommendations that will solve an immediate problem and recommendations that will not be accepted but may be admired and even adopted some years later; between consensus achieved by making language general or fuzzy and a strong, clear recommendation accompanied by a strong, clear dissent. There is no one right answer for any of these matters, but the itemization shows how many balances must be stuck in the course of designing and executing the work of a commission.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

TABLE 21 Factors that at Least One Respondent Saw as Having a Negative Effect on President's Commission Reports. Fixed-response Items from Survey of Members and Staff, 1993

 

Factors Cited as Positively Affecting each Report by any Respondent (number citing each factor)

Name of Report

Time Constraint

Budget Constraint*

External Interest

Congress Politics

White House Politics

Defining Death

1

 

 

 

1

Protecting Human Subjects

 

2

1

1

 

Compensating for Research Injuries

2

1

5

2

2

Making Health Care Decisions

5

 

 

 

 

Whistleblowing in Biomedical Research

1

 

1

 

 

Deciding to Forego Life-Sustaining Treatment

5

1

 

1

1

Implementing Human Research Regulations

3

1

3

1

1

Screening and Counseling for Genetic Conditions

4

1

1

 

 

Securing Access to Health Care

3

 

2

4

8

Splicing Life

3

1

2

1

1

Total Mentions

27

7

15

10

14

Lesson Four

A strong staff can overcome serious shortcomings of a commission itself. Conversely, a strong commission can overcome serious staff problems.

Both of these commissions are widely viewed as successful. But, as was described earlier, the relative strengths of the membership and staff of the two commissions were quite different. The strength of the National Commission lay in its membership and chair, and to a lesser extent its staff. The President's Commission's strength lay in its staff.

Accordingly, the two commissions were characterized by different staff/commissioner relations. Members of the National Commission debated among themselves down to the smallest details of reports, in many cases going line by line over staff drafts to make sure that the staff had captured exactly what commission members had agreed to among themselves. By contrast, staff members of the President's Commission were much more

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

Composition of Commission

Role of Staff

Framing of Charge

Bureaucratic Location

Papers/ Studies Done for Commission

Public Hearings

 

1

1

 

 

 

2

 

 

 

 

 

5

 

3

2

1

3

1

 

 

 

 

 

 

1

1

 

 

 

6

 

 

 

 

 

1

 

1

 

 

 

1

 

 

 

 

 

9

1

1

1

 

 

2

2

2

2

2

1

27

5

9

5

5

4

engaged in trying to work through their own ideas and solutions to the problems assigned to the commission, and meetings had more of a flavor of commissioners providing oversight over what staff had done and of staff trying to sell the ideas that had been developed.

Lesson Five

Topics need champions-an influential member or staffer who cares about it and insists that the commission care.

If a commission is asked to study and make recommendations on several topics, a particular topic can become an orphan. If this happens, a perfunctory report may result (as with the National Commission's Special Study or its report on ethical issues in the delivery of services by the Department of Health, Education, and Welfare). Or the commission may decide not to even issue a separate report (as with the President's Commission's

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

statutory mandate regarding privacy and confidentiality issues in research and medical care).

Because the personal interest of influential commissioners or staff members is so important, the experience of the President's Commission demonstrates that topics that are self-assigned by the commission itself can be handled with enormous distinction. The report Deciding to Forego Life- Sustaining Treatment was not part of the commission's legislative mandate; it was a topic that was undertaken in response to issues that came to the fore during the work that led to the report Defining Death.

Lesson Six

Although several definitions of success can be applied to commissions, nothing substitutes for having a perceptible impact on either policy or practice.

Although the success of a commission is multidimensional and may be difficult to assess objectively, people who are engaged in the enterprise as commissioners or staffers clearly believe a report must make a difference if it is to be considered a success. No matter how well reasoned and carefully documented a report may be, if it does not change something in the world it will be viewed as a failure.

Even very high quality reports can fail to have a significant impact on policy or practice. A commission report can contribute to the ripening of a topic by bringing attention to it, but it is also true that carefully documented reports with clear recommendations can be ignored. This is particularly likely under two circumstances.

The first is when the policy changes that implementation would require are tightly controlled by vested interests and there is no significant constituency behind the recommendation. (The President's Commission's report Compensating for Research Injuries is a case in point, requiring action by the Department of Health and Human Services with virtually no outside prodding, except from the commission; bureaucratic inertia easily killed the recommended ideas. The same was true of the National Commission's report on Those Institutionalized as Mentally Infirm.)

Second, reports can fail to have an impact when there is no particular target for the recommendations, as was the case with the President's Commission's report Making Health Care Decisions. The most that staffers could realistically expect of the report's call for more shared decision making between doctors and patients was to have an influence on medical education; this is a very diffuse kind of impact and no one had much confidence that the issuance of a commission report-even one that based a satisfying ethical argument on solid empirical grounds (including survey data on

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

people's desire for information and data linking good communication to positive health outcomes)-was likely to have a substantial impact on entrenched patterns.

Lesson Seven

Recommendations are not self-implementing.

Commissions that want to see their recommendations enacted in law or policy need to keep an eye on how agencies or legislative bodies deal with their recommendations. Recommendations issued near the time that a commission disbands and with little publicity and no follow-up are easily ignored by policymakers who have other agendas. The early reports by both commissions tended to have the best chance of being adopted in policy.

Requirements that agencies respond publicly to commission recommendations can play a valuable role in this regard-it was particularly important for the National Commission's regulatory recommendations but other mechanisms (e.g., congressional hearings) can play a role. The importance of the public information function and the dissemination of findings in forms in addition to formal reports should be recognized.

ACKNOWLEDGMENTS

The author acknowledges with gratitude the assistance of Andrea Adams, Mary Anastasio, Jennifer Morgan, and Annie Elizabeth VanDusen.

NOTES

1.  

Other bodies have had less success. The congressionally created Biomedical Ethics Advisory Committee foundered over issues of mandate and appropriations and disbanded without ever issuing a report. Earlier, the Ethics Advisory Board, which was created by the Department of Health, Education and Welfare in 1978, demonstrated its ability to respond in a timely fashion to issues of biomedical ethics, but was eliminated with the stroke of a bureaucrat's pen when funds were needed elsewhere.

2.  

A substantial literature exists on presidential commissions. Examples include David Flictner, 1986, The Politics of Presidential Commissions: A Public Policy Perspective (Dobbs Ferry, NY: Transnational); Terrence R. Tuchings, 1979, Rhetoric and Reality: Presidential Commissions and the Making of Public Policy (Boulder: Westview), and Thomas R. Wolanin, 1975, Presidential Advisory Commissions: Truman to Nixon (Madison: University of Wisconsin Press).

3.  

Prestige is to some extent a function of the prominence of the individual members, but the designation, "President's Commission," itself carries weight and commands attention from the press and the public. This is one reason why the politically powerful sometimes like to create commissions and the politically vulnerable worry about the attention and legitimacy that may be given to a cause or point of view to which they are opposed, and why people from many camps will seek to influence the membership of the commission.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×

4.  

For example, both Senator Kennedy and Senator Buckley, who had reached a key legislative compromise involving fetal research-creating a moratorium pending recommendations from the Commission-had visible hands in the selection of commission members, and the chair of the President's Commission was owed a large political debt by President Carter. Political connections undoubtedly had a role in other members' appointments; the least subtle instances occurred when President Reagan made several appointments to the President's Commission after the terms of several Carter-appointed commissioners expired.

5.  

The major examples were the National Commission's study of the Institutional Review Board system and the President's Commission's extensive survey research project of the public and physicians to provide documentation for its report Making Health Care Decisions.

6.  

This statement requires some qualification, since there was some turnover of commissioners and staff, especially in the instance of the President's Commission. Moreover, since staff members tended to concentrate on certain reports and since the interest and commitment of individual commissioners varied across topics, it could be argued that in a sense the commission and staff both varied from topic to topic or report to report. Yet, for both commissions, there was one staff director and one chairman and substantially the same set of commissioners and staffers throughout the commission's life.

7.  

Federal Register citations should be interpreted with caution because the same action may appear numerous times. Moreover, a report may be cited more than once without final regulatory action ever taking place.

8.  

In legislation to indemnify vaccine manufacturers so that they would produce the swine flu vaccine, Congress required the Centers for Disease Control to consult with the National Commission regarding the issue of informed consent; the commission met with CDC officials and sent them a letter with recommendations. The consultation (though not the commission's letter) was cited in several lawsuits alleging injuries from the swine flu vaccine.

9.  

Rust v. Sullivan; Cruzan v. Missouri Department of Health; Bowen v. American Hospital Association.

10.  

In the view of some, this was also a problem with the report on the institutionalized mentally infirm.

11.  

A methodological point arose with regard to responses of staffers of the President's Commission, many of whom devoted much or all of their effort to particular topics and who had little or no involvement with other topics. Unlike staffers of the National Commission, who generally attended all parts of all meetings, many President's Commission staffers went to commission meetings (or parts of meetings) only when their particular topic was on the agenda. As a result, President's Commission staffers had more difficulty assessing the process and outcome of the whole group of reports than did National Commission staffers.

12.  

Perhaps the best example of timing was the coincidental release of the report on Definition of Death on the same day that an anti-abortion Constitutional amendment that would define the beginning of human life was introduced on Capitol Hill. The juxtaposition was too delicious to be ignored by the media and led to a Nightline appearance that night by the executive director and a member of the Commission, as well as other news coverage.

13.  

I first heard a similar formulation from David Goslin regarding projects at the National Research Council.

14.  

Adequate resources are also a requisite, but this was not an issue in either of these cases.

Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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×
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×
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
×
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Suggested Citation:"Bioethics Commissions: What Can We Learn from Past Successes and Failures?." Institute of Medicine. 1995. Society's Choices: Social and Ethical Decision Making in Biomedicine. Washington, DC: The National Academies Press. doi: 10.17226/4771.
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Breakthroughs in biomedicine often lead to new life-giving treatments but may also raise troubling, even life-and-death, quandaries.

Society's Choices discusses ways for people to handle today's bioethics issues in the context of America's unique history and culture—and from the perspectives of various interest groups.

The book explores how Americans have grappled with specific aspects of bioethics through commission deliberations, programs by organizations, and other mechanisms and identifies criteria for evaluating the outcomes of these efforts. The committee offers recommendations on the role of government and professional societies, the function of commissions and institutional review boards, and bioethics in health professional education and research.

The volume includes a series of 12 superb background papers on public moral discourse, mechanisms for handling social and ethical dilemmas, and other specific areas of controversy by well-known experts Ronald Bayer, Martin Benjamin, Dan W. Brock, Baruch A. Brody, H. Alta Charo, Lawrence Gostin, Bradford H. Gray, Kathi E. Hanna, Elizabeth Heitman, Thomas Nagel, Steven Shapin, and Charles M. Swezey.

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