Bioethics engages many pressing and perplexing questions that arise in clinical medicine, biomedical research and the life sciences, and health policy.
Should we attempt to resuscitate extremely preterm infants who may be left neurologically devastated in the process?
Are we morally required to respect the wishes of a teenage cancer patient who refuses life-saving chemotherapy?
Is it morally permissible to test children for adult-onset diseases that cannot be treated?
On what basis should scarce medical resources be allocated or denied?
When, if ever, is harmful experimentation on animals morally justified?
My research on these and other bioethical questions is guided by two closely bound beliefs. First, I believe that philosophy can benefit bioethics by identifying, analyzing, and critiquing its hidden assumptions, unexamined concepts, and prevailing dogmas. Whether it’s rethinking a particular argument or concept, such as the duty to rescue or the child's right to an open future, or the larger aspirations of bioethics as a field, I use philosophical tools to better understand, conceptualize, and resolve bioethical issues. Second, I believe that philosophically rigorous bioethics can improve clinical practice if it is contextualized and articulated in ways clinicians can actually use. As a philosopher embedded in the clinical environment of a major tertiary-care children’s hospital, my work is deeply informed by the needs of the clinicians I teach and with whom I collaborate and the patients and families we serve.
To date, this approach to bioethics has guided my research (as well as my teaching and professional activity) within several primary domains:
PEDIATRIC BIOETHICS I have published and presented widely on a variety of issues in the field of pediatric bioethics, including the philosophical foundations of competing standards and principles for pediatric decision-making, the child's right to an open future, pediatric ethics education, pediatric ethics consultation, resource allocation in pediatric intensive care, disclosure of misattributed paternity in pediatric genetics, pediatric palliative care vs. euthanasia, newborn screening mandates, the management of fetal risks, pediatric face transplantation, resuscitation of preterm infants at the borderline of viability, and the relationship between marriage laws and policies and the well-being of children.
In other work currently in preparation, I'm developing a balanced interest standard for pediatric decision-making that seeks to adequately balance at least three types of perennial interest conflicts: 1) a child's future vs. present interests, 2) a child's health-related vs. general well-being interests, and 3) the interests of the child who is a patient vs. the interests of other stakeholders affected by decisions. GENETIC AND GENOMIC ETHICS My research on the ethics of disclosing individual results in genomic biobank research has been supported by funding from the National Human Genome Research Institute (R21HG006613) and has led to numerous publications and presentations, including the creation of a framework for analyzing the ethics of disclosing genetic research findings and analyses of the ethics of disclosing individual research results to genetic relatives and misattributed parentage to families. Much of my work has focused on analyzing and critiquing the underlying concepts invoked by ELSI researchers in support of a duty to disclose individual research results, such as the duty to warn or rescue and duties of reciprocity and entrustment. I've also published and presented extensively on the concept of the child's right to an open future which is frequently invoked in genetic and genomic ethics.
Other work currently in preparation includes papers critically analyzing the concept of actionability and the paradigm of genetic exceptionalism that surrounds much thinking in translational genomics and ELSI research.
HISTORICAL, METHODOLOGICAL, & PHILOSOPHICAL FOUNDATIONS OF BIOETHICS Another area of research focus has been the historical, methodological, and philosophical foundations of bioethics. Here I’ve been particularly interested in critically evaluating competing accounts of the origins, nature, and purpose(s) of bioethics and what it can, and cannot, do (well). I’ve argued that while bioethics has too often limited itself merely to "clarifying" values, it should expand its scope of work to include critiquing fundamental assumptions, integrating competing values (to the extent possible), and prescribing specific recommendations. I've also made the case in numerous venues that bioethics must employ a wider social and historically-informed lens when engaging the issues within its purview.
ANIMAL ETHICS I remain interested in a number of issues within the domain of animal ethics. I have edited a well-reviewed collection of essays on the ethics of biomedical research involving non-human animals that brought together emerging figures and established scholars to rethink the issues and identify common ground and new approaches. I’ve also published on the ethics of using non-human animals for food and on the nature and scope of various theories of animal rights.
APPLIED POLITICAL PHILOSOPHY: THE NORMATIVE FOUNDATIONS OF CIVIL MARRIAGE Many of my early publications grew out of research work completed in my Rice University Ph.D. dissertation entitled, The Normative Foundations of Civil Marriage. These articles each examined various arguments for the conclusion that the state has legitimate authority and sufficient reasons to establish and support a civil institution of marriage, as well as arguments for whether it could ever be justified to exclude certain kinds of relationships, such as same-sex marriages, from this civil institution.