Presentations

"The Current Environment for Philanthropic Funding of Ethics Scholarship," based on remarks delivered by Neen Hunt, former President of the Lasker Foundation, at the annual meeting of the American Society for Bioethics and Humanities in Philadelphia, October 29, 2004

Ethical issues are central to the fabric of discourse that engages the public and our nation's leaders. Today there is increasing scrutiny of different sectors of our society for lapses in ethical value-laden considerations. Corporate governance, biomedical research, medical practice and pop culture are very diverse arenas, but they all have been experiencing a renewed and serious interest in the ethical challenges that emerge from their work.

As the leader of a philanthropy committed to medical research, I am deeply aware of the ethical dilemmas that the newest directions in science continue to generate. I believe that philanthropic support can make a difference in the debate community by assisting thought leaders to address issues that threaten to create lasting divisions in our society.

Starting from this premise, I proposed to the Lasker Trustees that we convene a national forum to assist science professionals, policymakers and the interested public to better understand and respond to the ethical and legal issues emerging from recent advances in basic research that lead to innovative clinical practices. The Foundation's mission to strengthen the medical research enterprise in the battle against disease and disability—principally advanced through our 60-year sponsorship of the prestigious Lasker Awards for Basic and Clinical Medical Research—focused historically on increasing funding support for medical research. A decision to examine ethical issues arising from recent advances in biomedical research represented a major departure in strategy. The Trustees reasoned that a role of philanthropy is to expand the intellectual capital that will move our civilization forward. They expressed their commitment to invest in ideas while recognizing that adding to human knowledge is a lengthy journey that may not readily reveal measurable results.

With support from the Greenwall Foundation, the Lasker Foundation gathered 80 research scientists, clinicians, philosophers, religious leaders, health and research advocates, lawyers, ethicists, authors and journalists. Chaired by Donald Kennedy, the former President of Stanford University and editor of Science Magazine, and Harold Shapiro, former President of Princeton University and Chair of the Bioethics Council in the Clinton Administration, the forum participants discussed complex ethical issues in four areas of medical innovation: off-label drug use, assisted reproductive technology, imaging technology and stent surgery.

To learn more about the contributions of philanthropies to ethics scholarship, I surveyed senior leaders of fifteen foundations with an expected interest in bioethics based on active support of science, medical education, public health, and related fields, including the humanities. It quickly became evident that this universe is relatively small. The Foundation Center and the Academy of Arts and Science report that just five major foundations currently provide approximately one-quarter of total funding for the humanities, while 256 smaller foundations provide approximately one-half of the support. While foundation support for the humanities has grown steadily, it grew more slowly than other fields. Encouragingly, however, the number of foundations making humanities grants in 2002 climbed 37 percent, with more than two-thirds making at least one grant for the humanities.

Why are more philanthropies, especially the most capable, not interested in ethics scholarship?

The most common reply to my inquiry was a foundation's standard defense of "this direction is beyond the scope of our mission," regardless of whether they funded broadly in the fields of humanities or science and health. I assumed wrongly that these organizations would be committed to addressing issues that divide society, retard public policy, and confuse so many people who are grappling with new kinds of decisions made possible by science progress.

Indeed, it surprised me that many of the respondents to my inquiry expressed the opinion that they "just didn't want to go there." Among other reservations, they shared a common concern that funding support for the study of ethical issues would not yield "deliverables" or evidence of progress. One board of a large philanthropy that had seriously considered funding the study of ethical issues decided not to do so because its members could not be convinced that studies would have "practical applications" with relevant decision-making bodies like courts, legislatures, public health institutions, and influential professional groups. Others described ethics scholarship as not "hard science," or worse, as "vapor." The growing trend toward venture philanthropy likely plays a role in these attitudes, given its emphasis on transparency, accountability and efficiency.

An important insight from my inquiry is that professional ethicists may unwittingly be contributing to the challenges to funding their work which now are present. More than a few of my respondents apparently view ethicists and philosophers with suspicion. They are not convinced that such professionals are equipped to truly help society resolve serious value conflicts. They point to the barriers of technical language practiced by professional ethicists, creating a perception that ethical questions are beyond the grasp of even interested laypersons.

This perception was taken into account by participants in the Lasker Forum, who agreed broadly that efforts to resolve ethical dilemmas must "involve more lay people," reflect "greater participation from the general public," and include "voices of the patient, consumers and others who will be affected by the resolution of ethical conflicts."

What might be done to shift the attitude of funders who are wary of providing support for ethics studies?

Several of the respondents to my inquiry call for changes in how ethics are studied. They refer to the need for "a progressive movement" that will question assumptions, now embedded in western thought, about justice, fairness, and equality. They also encourage the study of current ethical questions with approaches that reflect more diversity in respect to the leadership and spokespeople who represent the field. In addition, they suggest the need for novel approaches to the analysis of current issues, as well as innovative strategies to engage the public in the debate.

One respondent expresses dismay that the study of bioethical issues is too often approached as if it can be "values-free," unhinged from value-laden traditions that guide moral choices and behaviors. She sees a growing divide between science and religion and calls for a new consideration of religious traditions and values as reference points for developing new moral obligations for institutions, and for individuals.

Yet another reason the reluctance to fund ethics studies can be described as existential: that is, a deep pessimism.

Given the findings of this inquiry, what are some of the implications for future philanthropic support of ethics scholarship?

First, competition for limited support for ethics scholarship will remain severe, especially for work unlikely to result in practical gains and concrete findings. Funders will be biased in favor of "activist scholars" conducting "empirical research," e.g., studies that are conducted in real settings that advance ethical discourse and decision-making in the face of real, rather than hypothetical dilemmas. One such example is studies that have examined the work of institutional review boards that oversee medical research on human subjects, and that analyze the skill-set required by its members—the ideal committee membership, the most efficient and effective decision-making process. Debates about end-of-life policies and practices also are often identified as an example of how ethics scholarship can affect practice.

Grant seekers also might direct their research toward the interdependency of fields that affect our thinking about ethical issues, such as work that connects the fields of medicine, nursing, law, sociology, philosophy and theology, among others.

Few funders may be willing to air the very sensitive, controversial questions that require deeper thought and more public discussion—what someone referred to as the "dirty stuff." A study of the ethics of "enhancement" possibilities from new medical technologies is given as an example, as is science used for eugenics. But these subjects, perhaps more than others, will require the engagement of professional scientists and an informed public if they are to be addressed by public policy that can be broadly embraced.

At the Lasker Forum, Dr. Shapiro challenged both the professionals and the lay participants to approach their debates by agreeing that "they may change their minds, and participate with a suspension of their own strongly held beliefs." He reminded the participants that it is not easy to alter "habits of mind" that have guided us through the moral mazes of different times, but that do not necessarily fit the new issues arising from rapid cultural, demographic and social changes. Shapiro also offered an important reminder for everyone who engages in ethical debates: that the task of puzzling over what it means to be human is centuries old and will never cease, but that we can still progress toward new ways of realizing our humanity with an enduring respect for every individual life.