Bioethics conversation starters

From stem cell research to genetic testing to inequities in health care, bioethics questions are part of conversations throughout the United States every day. Two Wake Forest professors, Nancy King, Professor of Social Sciences and Health Policy at the School of Medicine, and Michael J. Hyde, University Distinguished Chair in Communication Ethics, aim to continue to raise awareness of bioethics issues and the importance of public discussion in their new book, “Bioethics, Public Moral Argument, and Social Responsibility,” published this month.  The book grew out of a gathering of scholars Wake Forest hosted two years ago.  King and Hyde explain why this topic is so important and share some insights from the essays in the book.

In two years, Wake Forest has established a master of arts degree program in bioethics, created the Center for Bioethics, Health and Society, hosted a major conference on bioethics and communication and focused its freshman reading assignment on bioethics among many other activities.  Why is giving a higher profile to bioethics so important?

Advances in biotechnology have given a new ring of urgency to the age-old question:  What is the meaning of human being? The reality is that these issues matter in all our lives: they touch each of us and our families.  We all have a stake in them, and because we are all moral agents, it is essential that we talk together well about them.  Bioethics represents a multidisciplinary field of scholarly inquiry that is both engaging and relevant; through it, students and faculty can not only learn together, but also learn to make a difference.

What are the most important bioethics issues our society confronts today?

Is there a limit to how far we should go to enhance the physiological and psychological capacities of human being?  For example, how far should we go in genetic research that allows us to “design” our children?

There are also important policy questions about research priorities in a climate of scarce resources; questions about how biotechnology affects our view of what is most significant about the human experience; and very important questions about health as a human good: what does every person deserve as a matter of fairness, what technologies should be viewed as commodities for purchase, and how can we best understand biotechnological progress without seeing ourselves as commodities?

If you were talking to someone who knew little about bioethics, what are the most important messages you would like to convey about this collection of essays?

From “The Ethics of Genetic Engineering” to “Research Ethics” to “The Ethics of Abortion,” perhaps the best and broadest characterization of this set of essays is that they address the problems of justice in health care and the meaning of human dignity in the face of illness and the technologies of treatment.  But another message of this collection seems paradoxical: we all know more than we think we know about bioethics issues and questions, and we all have much more to learn, if we listen well to each other.  Bioethics issues are accessible and discussable, but they are not just a matter of opinion.  Good work in bioethics and health communication is based on reasoning – that is, on testing arguments of all types in conversation, on persuasive presentation of evidence, on talking about virtues and values.  Essentially, bioethics is one of the ways humans come to terms with being human, being mortal, caring about and for each other.  Perhaps most important, both bioethics and health communication are fundamentally about the ways we live together with words, and how our words should influence our deeds when we engage—as we all do– with medical care and biotechnology.

What wisdom does this book hold for those grappling with end of life decisions?

The essays address how people should be as well informed as possible and responsible about their medical care.

Thinking clearly and talking together with care and respect about the ends of human life is an essential step toward grappling better with the end of life and the complexities of what we owe each other in order to make all our lives better. All people spend at least some time as patients, in need of health care. It is therefore the task of each of us to become informed and to make responsible decisions about treatment and about maintaining good health: it is also the task of society to decide what should be available to all of us: what counts as reasonable access to health care and essential public health interventions.

What are the important connections between health communication and bioethics?  What brings the two fields together?

There are many ways in which these two fields come together naturally and productively.  Bioethics and health communication are both broadly multidisciplinary fields organized around a set of common topics and issues.  They are also fields that combine scholarly examination of these topics and issues with the deep desire to make a difference in practice – to change the world for the better.  After all, in both health care and research, almost all bioethics problems are also problems in communication. Communication practices help to establish physician-patient relationships; they also help to communicate to and with the public about the benefits and burdens of biotechnological progress.  Democracy is weakened without an informed and engaged citizenry.

Current and future collaborations between bioethics and communication here on campus help to demonstrate the central role of bioethics discourse, both in the university and in modern society. This November, the Center for Bioethics, Health, and Society is sponsoring a major conference on ethical issues in research with human subjects, and a week-long visit by Dr. James Jones, historian and author of Bad Blood: The Tuskegee Syphilis Experiment.  Coming up in spring 2013, another major conference will address public and religious perspectives on advances in biotechnology.

Why is it important to promote meaningful discussion of how science and medicine affect and should affect our lives?  What needs to be done to improve communication about bioethical issues?

Such discussion helps to ensure that the public will be educated about their present and future health-care needs and desires.  Medical science is obligated to seek informed consent from it patients and such consent presupposes competent communication skills on the part of all parties.  We need to promote discussion between “experts” and “non-experts” about science and medicine in our lives.  We all have relevant experiences, perceptions, and perspectives to share.

How can “public moral argument” help build consensus and contribute to better policy making on biotechnology issues?

Public moral argument is an essential feature of a vibrant democracy.  It grants people a voice in the discussions at hand; it respects them as autonomous agents who have the right to have a say in their treatments. Importantly, consensus is not necessarily the goal. Many bioethics issues are both sensitive and contested, especially when it comes to new biotechnologies. A more important goal might be to discover how we can develop policy that allows us to agree to disagree, by ensuring the availability of a range of reasonable choices and promoting ongoing discussion about the value of a preserving a range of viewpoints in a pluralistic society. One of the most important goals of bioethics discourse is to promote mutual respect for divergent viewpoints; good communication requires respectful engagement with others, and provides models for developing, discussing, and defending reasonable, respect-worthy decisions.

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