Volume 1, December 2001
www.psljournal.com/archives/newsedit/recon_science.cfm
Reconciling Science and Society*
Tanya Williams**, Scott Siera**, and Arri Eisen***
* Based on the Fourth
National Undergraduate Bioethics Conference Emory University, October 4-7, 2001;
sponsored by the Program in Science & Society of the Emory College Faculty
Science Council and the Emory Center for Ethics.
**Emory undergraduate
fellows in Science & Society
***Senior Lecturer in Biology, Director of the Program in
Science & Society of the Emory College Faculty Science Council and Director
of the Science, Ethics, & Society Initiative in the Emory Center for Ethics
The
Fourth National Undergraduate Bioethics Conference held at Emory University
October 4-7th, 2001, marked the a stage in the vital conversation between
science and society. Over 100 students
and 40 professionals representing more than 30 institutions gathered in
Atlanta. The conference was the first
of its kind to explore applied ethics across multiple disciplinary fields,
while simultaneously permitting intellectual interaction among distinguished
scientists, clinicians, faculty and students from universities across the
country.
This
conference sought to build upon the achievements of the previous three
conferences, also organized by and for students. Princeton University hosted
the first conference, entitled Bioethics in the New Millennium, in
February 1999. It brought together internationally recognized bioethicists and
undergraduate students from around the United States. Effectively setting the tone for its successors, this conference
focused on the role of bioethics in medicine, industry, and public policy. It
featured lectures and panel discussions led by Francis Collins, Director of the
National Genome Research Institutes of Health, Roy Vagelos, former Chief
Executive Officer of Merck & Co, Inc., and other acclaimed speakers in the
scientific field.
The success and enthusiasm generated by the first
conference fueled the second National Undergraduate Bioethics Conference hosted
by the University of Virginia in March 2000. This conference was designed to
further facilitate dialogue between bioethicists and students who would set the
ethical, legal, and social precedents for dealing with medical progress and
health care in the new century.
Extending the discussion topics of the previous conference, the second
conference addressed stem cell research, new reproductive technologies, managed
care and access to health care, and the ethical issues associated with the
human genome project and cloning. The Third National Undergraduate Bioethics
Conference held on the University of Notre Dame campus in March 2001, expanded
the focus to include an examination of the effects of bioethics on varying
aspects of health—physical, mental, and social. It recognized that bioethics as
a discipline has broadened its scope by studying how scientific advances and
philosophy affect all areas of human life. The fourth conference took this idea
one step further.
Acknowledging
that bioethics—coined in the title of Van Potter’s 1971 book Bioethics:
Bridge to the Future—as a discipline is less than forty years old, the
fourth conference reminded society that bioethics also applies to matters
outside the realm of medicine. If the
public was asked which issues exemplify this emerging field, the majority would
more than likely respond with a biomedical answer. Many people would be quick
to point out ethical controversy surrounding United States medical research in
third world countries, reproductive medicine and cloning, and the future of
gene therapy. Quite possibly, a few would mention the struggle to define death
in light of advancements in life-support technology and to determine what role,
if any, a physician should play in the termination of life. While these issues
are all critically important considerations for society, they do not succinctly
represent the ethical dilemmas humanity faces in the present or future.
Too often, religious and ecological consequences of modern
medical technology and research are overlooked. Contemporary health practices
largely focus on fighting death and prolonging life. Breakthroughs in pathology
and advances in therapy have extended the lives of many who, in the recent
past, might have succumbed to diseases such as sickle-cell anemia and cystic
fibrosis. On a different front, our
ecosystem is already facing daunting problems stemming from overpopulation and
crowding concerns. As researchers and clinicians continue to develop methods
for prolonging life and prohibiting death, what will happen to the environment?
We realize that human health and well being have many faces, all of which
interact to maintain the balance of life. If we ignore issues that affect the
spiritual, emotional, and environmental health of society, focusing primarily
on mental and physical benefits, we are doing ourselves a great disservice. In
preemptive fashion, the fourth undergraduate bioethics conference brought these
questions to the surface, emphasizing the need to create a dialogue between the
diverse elements of science and society.
The
conference officially commenced with keynote speaker Dr. Glenn McGee, Associate
Director for Education at the University of Pennsylvania Center for Bioethics,
Associate Professor of bioethics, philosophy, and the sociology of science, and
Editor-in-Chief of the American Journal of Bioethics. Dr. McGee spoke
about the latest ethics, science, and policy issues surrounding embryonic stem
cell research. Following this opening address, conference participants were
invited to join panel discussions or go on ‘ethics on site’ field workshops at
nearby locations. Field trip venues included the headquarters of The Centers
for Disease Control and Prevention, The American Cancer Society, The Veteran's
Affairs Hospital, and Wesley Woods Geriatric Center. Panel discussion topics
ranged from Urban Planning to the Intersection of Law, Religion, and Bioethics.
The
Urban Planning discussion featured Dr. John Wegner, Director of Undergraduate
Studies in Environmental Studies at Emory University. Dr. Wegner, claiming to
be an environmental ‘advocate’ instead of an activist, suggested an application
of ecological landscape principles in developing the urban environment. The
group questioned if urban planning was really possible, given the population
explosion and if it would be put on hold in light of the events of September
11th. To answer the first part of the question, the panel suggested a new
model—planning outside a central city core by using new telecommunications
technology to disseminate populations from the central cities. This solution, however, like many, creates
additional questions. How can we maintain a sense of community if we
decentralize? What will be the impact on certain gender, racial, and class
groups? In essence, how do we address issues of equality in urban planning? Our
values are reflected in the ways we have planned our communities. Inequities
are more than evident, and we must decide if urban planning causes social
problems or if planning policies are simply a manifestation of pre-existing
social problems. More importantly, how can scientists, bioethicists, and the
like connect with and possibly offer solutions for these social issues when
there is a barrier to communication and a gap between poverty and
intellectuals?
Similarly,
the discussion of the Intersection of Law, Religion, and Bioethics raised
equally pressing ethical issues. Panelists included Dr. McGee, Michael Broyde, Associate
Professor of Law and the Academic Director of the Emory Law and Religion
Program, sociologist Timothy Lillie from the University of Akron, and Bobbi Patterson,
Senior Lecturer in religion at Emory. The discussion first focused on
explaining where society gets its values from in the context of making
bioethics decisions. The American legal system tends to concentrate on personal
rights and the boundary between individual rights and societal values. On the
one hand, by drawing lines only in the face of harm to another, law establishes
limitations before punishment. Religious values, on the other hand, revolve
around an ideal that promotes divine behavior. Society gets its values from a
conglomeration of the two. Thus, it becomes important to understand the
interaction between law and religion in society, be it explicit or implied
religious influence on secular law or secular law’s influence on religious conduct.
Ideas then shifted to illustrate contemporary tension between law, religion,
and bioethics. Dr. McGee presented three examples that he felt contribute to
the collective sense that we do not know what we are doing—the Jack Kevorkian
trials, clergy undereducated on important bioethics topics, and a lack of
resources for judges that preside over bioethical cases. Each scenario would
support a different approach in educational methods because each one involves
decision-making based on inadequate information. Another discussion group on
Transforming Science Education, composed of educators from Emory and Morehouse
College, discussed specific strategies to effect such change.
After
the first day of panel discussions and subsequent breakout sessions, Dr. Ursula
Goodenough, professor of biology at Washington University, and author of The
Sacred Depths of Nature, gave the second keynote address,
focusing on the spiritual implications of scientific research. A molecular biologist and religionist, Dr.
Goodenough shared some ideas concerning religious naturalism and mindfulness
which are part of her next book.
Arguing that objects, phenomena, and beings nature possess an inherent
spiritual worth, Dr. Goodenough formed connections between even the most basic
science and a secular morality.
Another
panel, Patient Rights: Spiritual and Ecological Perspectives, featured
Emory-affiliated speakers. Kathy
Kinlaw, Associate Director of the Emory University Center for Ethics and
Director of the Center’s Program in Health Science Ethics, addressed the debate
over the right to minimal health care. Is there a minimal standard concerning
the rights of patients to consent to medical treatment, to refuse treatment, or
to demand a certain type of treatment?
Gary Laderman, Associate Professor of Religion, provided a cultural
history of patient’s rights starting with the 1960's death awareness movements
in which people struggled with questions of dignity and the treatment of the
terminally ill. He commented that death, in modern society, is seen as a
failure. How do we go about transforming death from a taboo topic, provoking
images of fear and defeat, into a natural part of life? Tammie Quest, Assistant Professor at the
Emory School of Medicine, detailed the provisions of the Patient Bill of Rights
which include, but are not limited to, a right to information disclosure, a
right to participation in treatment decisions, and a right to complaint and
appeals. These opening thoughts served as a jumping-off point for discussion.
Thoughts traveled from dispelling the medical myth that doctors are superhuman,
especially in terms of death disclosure, to determining who, exactly, is the
patient in the case of pregnant drug addicts. The group discussed
decision-making capacity and the fine line between paternalism and listening to
patient concerns. An important consideration includes how society questions the
judgment of its devalued members, its alcoholics and HIV-infected individuals.
The panel closed with a discussion of death and dignity as reflected by the
changing views of society.
Perhaps
the most seemingly incongruous session of the conference was the Disabilities
and Ethical Dilemmas panel. It was led by Dr. Timothy Lillie from the
University of Akron, Dr. John Banja, a clinical ethicist at the Emory University
Center for Ethics, and Dr. Gregor Wolbring, research scientist at the
University of Calgary Department of Biochemistry and Molecular Biology and an
adjunct professor of Bioethics at the Department of Community Rehabilitation
and Disability studies. Dr. Banja brought up patient’s rights issues for
neurologically disabled patients. What level of competence is required for
informed consent? Dr. Lillie proposed two models of disability—a medical model
that the body presents and a social model that depends on social environment.
Dr. Wolbring justified the inclusion of disabilities in bioethical discussions.
He commented on the double standard imposed on the disabled in genetic testing,
genetic discrimination laws, and pre-selection for in vitro fertilization. The
group speculated on who should the bear the costs of disability—the government,
society, or the patient, or some combination thereof. Would universal health
coverage solve all problems? Questions were also raised regarding disability
discrimination. Should a disability qualify as a reason not to hire someone if
they may increase costs? If an ‘invisible’ disability has the potential to
decrease job performance, is the employee obligated to tell the employer? These
panels were followed by additional breakout sessions and a closing synthesis
address by Dr. James Fowler, director of the Emory Center for Ethics.
While the conference may have ended, the discussion of
bioethics continues. The ideas and questions developed here at Emory University
travel with students and panelists back to their home institutions, as near as
the Atlanta University Center and as far as the United Kingdom. For one
weekend, the often-separate, but intrinsically linked disciplines of medicine
and science were effectively brought together with a common goal–to learn from
each other. The weekend was just the beginning. What happens now? Now, we
change. We change our approach to science, the way we ask questions, and the
way we do research. We have learned the importance of incorporating concerns
for the diverse aspects of society into our thought processes and decisions. We
have learned that bioethics extends beyond medicine and that we have more
questions about these issues and fewer answers. The road ahead is long, and
paved with trial and error as we formulate solutions to complex problems. We
cannot afford to let technology race forward while education and interpersonal
communication systems lag behind. We cannot afford to ignore the effects of
medicine and technology on religion and ecology. As long as we insist on
dividing societal and scientific realms, ethical dilemma will result from
disparate value systems. Reconciliation and interdisciplinary dialogue may not
be easy, but it’s the best way to achieve meaningful progress.