Each of us in our lifetime will face tough choices about our health, the health of a loved one, or the health of our community. Sometimes there are no clear right or wrong answers. So how do we tackle these ethical dilemmas? In this episode of Ethically Sound, host Hillary Wicai Viers talks with the chair of the Bioethics Commission Dr. Amy Gutmann and Dr. Lisa M. Lee, and discusses the Bioethics Commission's report Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology.
Each of us in our lifetime will face tough choices about our health, the health of a loved one, or the health of our community. Sometimes there are no clear right or wrong answers. So how do we tackle these ethical dilemmas? How would you decide whether to get tested for a genetic disorder that runs in your family? Or what medical treatment to give a loved one who cannot decide for themselves?
Welcome to Ethically Sound: A podcast of the Presidential Commission for the Study of Bioethical Issues. I’m Hillary Wicai Viers. Today, we’re talking with Dr. Amy Gutmann, President of the University of Pennsylvania, and Chair of the Presidential Commission for the Study of Bioethical Issues. But first, we’ll hear from Dr. Lisa M. Lee, Executive Director of the Bioethics Commission.
I had just completed my training in public health, and one my first tasks was to introduce a new policy to a group of community members. This new policy would require that all people diagnosed with HIV would be reported to the health department, along with some information about their health and their risk behaviors. In the room there were over 100 people who would be most affected by the new requirements, and armed with slide after slide of data and graphs, I made the case for the new policy.
Then, it was time for the question and answer session. The very first questioner was a poised and confident woman, with a commanding voice. She asked me how I could justify this new policy, and I was totally puzzled. I had just spent 30 minutes explaining what we were going to do and why. But, she kept pushing me. Others in the crowd supported her with audible approval. It was only after a brief exchange that I finally understood her question, and suddenly I felt woefully incapable of answering it.
She wasn’t asking what we could do; she was asking why we should do it. And at that moment, I recognized that I had not been prepared to identify or articulate the very important “should” part of the work that I was trained to do. I was expert at the scientific justification—that which tells us what we can do, but the ethical justification—the “should” part—I was unable to articulate that.
It was then that I committed to learning, and ultimately teaching others, about ethics. Science and technology provide us with great tools for improving our experience as human beings, and it’s up to us to consider how we ought to use these tools. It is these two parts—the “can” that science offers, and the “should” that ethics offers—that are critical elements of the decisions we make in health and science. That policy? Ultimately it was put into place, but only after a robust community discussion about the reasons that we should implement it.
That was Dr. Lisa M. Lee, Executive Director of the Presidential Commission for the Study of Bioethical Issues. Throughout its tenure, the Bioethics Commission has emphasized the importance of improving ethics education. As we heard from Lisa, ethics education can benefit all students and build a strong, lasting foundation for good science. This message was central in the Bioethics Commission’s tenth report Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology.
In the report, the Bioethics Commission set forth a series of recommendations to ensure that our society—and our decision makers—have the skills to resolve the pressing ethical questions facing our nation. Amidst polarizing political and social discourse, the Bioethics Commission urged the nation to engage in respectful discussion around morally complex and controversial issues.
Tough ethical questions arise for national bodies as well as local groups such as schools, churches, hospitals, and universities. Tackling these tough ethical questions requires careful and reasoned deliberation. The Bioethics Commission provided practical guidance for how to use deliberation as a method to help overcome gridlock and advance solutions to issues that have no clear answer. The Bioethics Commission also issued a series of recommendations to help ensure we are all better equipped to address the ethical dilemmas that arise in our daily lives. Everyone in our society– not just those who go on to become doctors or scientists– should have the skills to answer tough, morally complex questions, whether those questions are related to genetic testing or how to use neuroscience in the courtroom.
The Bioethics Commission outlined recommendations for integrating ethics into education at all levels, from kindergarten through high school, college, professional school, and beyond. In its report, it highlighted educational programs and classroom activities from across the country and abroad, such as the Intercollegiate Ethics Bowl, that teach students how to share their views and engage in thoughtful and respectful deliberation. The Bioethics Commission also recommended that teacher training include how to effectively infuse ethics education into the curriculum of all subjects.
The Bioethics Commission emphasized that deliberation and ethics education work together. Education is required for informed deliberation about complex bioethical issues, and deliberation results in a deeper understanding of ethical dimensions of difficult problems.
You can download Bioethics for Every Generation, and all the Bioethics Commission’s reports, at bioethics.gov.
Here today to talk about the Every Generation report is Dr Amy Gutmann, President of the University of Pennsylvania and Chair of the Presidential Commission for the Study of Bioethical Issues.
Dr. Gutmann, welcome to Ethically Sound.
This Commission has used democratic deliberation as its method for decision making in all of its topics, from medical countermeasures to neuroscience. How did your professional background and your scholarship in democratic deliberation help guide your leadership of the Commission?
I am an avid political philosopher and social scientist, and I’ve written about the importance of making democracy more deliberative, and a core value of deliberative democracy is mutual respect among the participants, which, for example, supports reason-giving rather than mudslinging, truth telling rather than deception and innuendo, and we in the Commission really prided ourselves on open deliberations that focused on both facts and values, and they proved essential in confronting some of the thorniest issues we had to face, such as whether to test an anthrax vaccine on children, and what we can learn from the Ebola epidemic so we’re better prepared to handle new public health challenges such as Zika. So, the value of deliberative democracy informed both how we proceeded in the Commission and the kinds of answers we sought, which would either reach consensus or if we couldn’t reach consensus, at least demonstrate respect and respectful compromises among a wide range of perspectives.
How did a commitment to democratic deliberation distinguish this Commission?
Well, on every tough issue we confronted, Commission members all deliberated together about a wide range of perspectives and policy options, and we also sought the broadest public input until we reached the most ethically and empirically defensible recommendation. And as it turned out, all our recommendations were unanimous. And this wasn’t always the case for previous commissions. Also, what distinguished the Commission was that our public meetings were as inclusive as possible, and we went to great lengths to do outreach. And just to give you an example, the Commission’s public meetings on privacy and genetics included the mother of two children who had benefitted from whole genome sequencing, and an Assistant District Attorney who had experience in using genetic databases in law enforcement. The Commission’s public meetings on the Ebola outbreak included a physician journalist who spoke about what it was like to report about the Ebola outbreak, as well as a community leader from the U.S. West African diaspora, who had experienced discrimination and stigmatization associated with Ebola.
Why is ethics education important?
Bioethical decisions affect all of us regardless of our backgrounds. For example, we cannot avoid making healthcare decisions for ourselves, and sometimes on behalf of an incapacitated loved one. So we are citizens of a society as well that needs to determine not only how to respond to, but also how to better prevent public health emergencies. We benefit from new technologies, such as whole genome sequencing, but they also carry with them some significant challenges to our privacy. Ethics education is not innate. It requires a set of skills and virtues that are developed, that equip us to make challenging ethical decisions in the course of our daily lives, also as responsible citizens and also during emotionally trying times. Many graduate and professional programs now require high quality ethics education, and that’s really good and important. But ethics education can’t begin at the graduate and professional level, if it’s going to be truly effective, and if we’re going to optimize its potential. Ethics education at its foundation needs to start early in everyone’s education.
How do democratic deliberation and ethics education intersect to create a more civic-minded society?
So ethics education and deliberation are what I call a “virtuous circle.” They are mutually reinforcing. Ethics education prepares members of the community to deliberate about ethically challenging topics by providing them with the skills and virtues to approach ethical challenges. Deliberation is itself an educational tool, and it allows community members to become more informed about an ethically complex topic, and it encourages community members to consider additional perspectives that influence their approach to such topics. Democratic deliberation and ethics education encourage members of a community to actively participate together to reach a decision on challenging topics, and they also, together, help people treat each other with respect when they can’t agree. Community members exercise both skills and virtues that enable them to participate in a collaborative and respectful manner as democratic citizens. So, democratic deliberation provides an alternative to hyper partisan gridlock that the vast majority of American citizens really lament these days, and democratic deliberation emphasizes the importance of mutual respect and reason-giving. Now, education is necessary and it helps people learn the skills and virtues of democratic deliberation, and in turn, democratic deliberation shows people what the fruits of education are, and reinforces that core value to both education, deliberation, and great democracies, and the core value is mutual respect. Ethics education and deliberation can be used to progress with research in both an ethical fashion, and an economical fashion. It minimizes the needs for regulation, and scientists themselves accept ethical responsibility. When regulations are needed, such as the requirement of informed consent and limited risk in human subject[s] research, ethical education and deliberation together help ensure that these are treated not as bureaucratic obstacles to be avoided but as ethical guidelines to be embraced. So, there is a real virtuous circle between deliberation and education that our Commission tried to model and our report took even further.
Thanks for being with us today, Dr. Gutmann, it was a pleasure.
You’ve been listening to Ethically Sound: A podcast of the Presidential Commission for the Study of Bioethical Issues. Thanks for joining us. You can check out our full series online at bioethics.gov.