What is Bioethics?

"No Easy Answers"

no easy answers w border“Bioethics” is a term with two parts, and each needs some explanation. Here, “ethics” refers to the identification, study, and resolution or mitigation of conflicts among competing values or goals. The ethical question is, “What should we do, all things considered?” The “bio” puts the ethical question into a particular context.

Bioethics is commonly understood to refer to the ethical implications and applications of the health-related life sciences. These implications can run the entire length of the bench-to-bedside “translational pipeline.” Dilemmas can arise for the basic scientist who wants to develop synthetic embryos to better study embryonic and fetal development, but is not sure just how real the embryos can be without running into moral limits on their later destruction. How much should the scientist worry about their potential uses?

Once treatments or drugs are in clinical trials involving human subjects, a new set of challenges arise, from ensuring informed consent, to protecting vulnerable research participants to guarantee their participation is voluntary and informed. Eventually, some of these new approaches exit the pipeline and are put into practice, where providers, patients, and families struggle with how to best align the risks and benefits of treatment with the patient’s best interest and goals. The added costs of new therapies inevitably strain available resources, forcing hard choices about how to fairly serve the needs of all, especially those already underserved by the health care system.

Questions in bioethics aren’t just for “experts.” Discussions of bioethical challenges take place in the media, in the academy, in classrooms, but also in labs, offices, and hospital wards. They involve not just doctors, but patients, not just scientists and politicians, but the general public.

Below you will find information on some specific areas within bioethics, as well as connections to a variety of related educational resources.

Clinical Ethics

stethoscope iconClinical ethics is a practical discipline that aims to resolve ethical questions or disagreements that emerge in the practice of health care. Clinical ethicists work to identify, analyze, and resolve value conflicts that arise when providers, patients, families, surrogates, and other stakeholders disagree or are uncertain about the ethically best course of action. For example, patients or their surrogates may refuse recommended treatments or demand non-beneficial treatments, which puts their requests at odds with providers’ medical judgment. Clinical ethicists help to identify and clarify ethical questions, find ethically acceptable courses of action, encourage honest and respectful communication between all parties, and recommend ethically acceptable solutions for the case at hand. Clinical ethics also works to improve institutional responses to ethical dilemmas through education and policy formation.

Health Policy

scales of justice iconHealth policy is about governmental efforts to manage health care as a public good. Government must assure access to needed health care for all, incentivize curative research, protect health quality, and control health care costs. Justice is the moral value most pertinent to health policy, given large public investments in creating our health care system. Consequently, bioethicists ask whether it is just that an individual’s access to needed, costly and effective care should depend upon an individual’s ability to pay, or the willingness of a state legislature to adequately fund the Medicaid program for the poor? Should the genetically healthy and fortunate help pay the health care costs of the genetically unhealthy and unfortunate? A just and caring society must address these questions through thoughtful bioethical inquiry and respectful democratic deliberation.

Genetics

dna helix iconMuch of medicine today is about genetics, whether for disease prevention, diagnosis, treatment, or reproductive decision-making. Emerging genetic technologies and knowledge generate numerous value conflicts. Consequently, bioethicists ask what is ethically appropriate if individuals have a mutation for a serious and now untreatable genetic disorder. Are those individuals ethically obligated to sacrifice their privacy rights to inform at-risk relatives? What are the ethical obligations for the best interests of future possible children on the part of parents considering whether and how to have children, when whole genome sequencing indicates serious potential risks associated with conceiving those children? Should social policies govern such decisions? Should those policies protect parental procreative liberty or enhance social responsibility for the best interests of those future possible children? This is bioethics in the age of genomics.

Neuroethics

brain head iconAs our ability to understand, measure, and manipulate the functioning of the human brain and nervous system rapidly advances, so too does our need to grapple with the ethical, social, and legal implications of these tools and neuroscientific knowledge. Neuroethics is an interdisciplinary research area that involves systematizing, defending, and recommending paths to action to address those issues. Neuroethics is also a platform for engaging different stakeholders to interact and discuss the future of neuroscience and neurotechnologies. That platform can take theoretical but also empirical and pragmatic approaches to the issues it covers, including the use of neuroenhancement drugs, memory dampening techniques, neural prostheses, the clinical and non-clinical uses of neuroimaging, and policy issues around neurotechologies. Neuroethics brings to light theoretical and reflective issues regarding how we think about and treat each other.

Clinical Neuroethics

Clinical neuroethics is a field at the intersection of neuroethics and clinical ethics, two dynamic and exciting disciplines. While neuroethics has developed at a time that neuroscience is making significant discoveries and developments at a rapid pace, clinical ethical questions have been on the table since the beginning of medicine. Clinical neuroethics combines these well-established issues with issues raised by interventions, drugs, and treatments that impact mental and neurological states. For example, the use of ventilators generated questions about who is alive and who is dead, as ventilators could keep blood circulating and oxygen flowing. Now, imaging tools can detect brain functions in those who appear clinically dead, and these questions arise anew. Clinical neuroethics addresses topics such as consciousness, death, deep brain stimulation, pain, and enhancement in the clinical setting.

Precision Medicine

test tube pills iconPrecision medicine is often ethically ambiguous. Precision medicine is about very expensive cancer drugs designed to target the genetic “drivers” of a metastatic cancer. In the U.S., ninety of these drugs have FDA approval and costs of $100,000 or more per year, with some therapies (CAR-T cell therapies) priced at $475,000. Some of these drugs are very effective. Imatinib (Gleevec) for chronic myeloid leukemia will yield more than ten extra years of life for 70% of these patients, but at $135,000 per year. Most, however, yield only extra months of life at very high cost. One goal of precision medicine is identify biomarkers that predict effectiveness in individuals. What then? Do we deny the drugs to patients who very likely (not certainly) will gain no more than three extra months of life? Is that limitation either just or caring? Therein lies the ethical ambiguity.

Reproductive Ethics

sperm egg iconReproductive ethics addresses topics that commonly provoke social and legal controversy, and intimately connect to concerns over reproductive justice. The field looks at issues related to assisting fertility (assisted reproduction, surrogacy, genetic manipulation of offspring), restricting fertility (contraception and sterilization), terminating a pregnancy (abortion), minors and access, and concerns that are more general over maternal and fetal best interests. Reproductive ethics examines perplexing questions: Should we enable people to reproduce after they die? Should we keep a brain-dead pregnant person on life support to allow for the birth of their child, or harvest a dead person’s sperm? Should we manipulate the DNA of our offspring, not only to eliminate entire genetic disorders, but perhaps also to select superficial traits such as intelligence or athletic ability? Reproductive ethics focuses on these questions, and more.

Research Ethics

microscope iconResearch ethics addresses a variety of ethical challenges or questions that arise in the conduct of research, human or animal, clinical or basic science, many of which are not answered by regulations. For example, the distinction between “identifiable” and “non-identifiable” is a critical boundary in human subjects research. Research using data whose human sources are not identifiable is not subject to the requirement of informed consent. But as the amount and variety of data (including genetic data) assembled around one individual increases—as happens in “Big Data” research—the less possible it is to guarantee anonymity to the sources. Then the question is whether the data is “non-identifiable” enough. That requires balancing the nature and magnitude of the risks against the research benefits.

Shared Decision-Making

handshake iconEffective clinical encounters depend on good communication. With the goal of arriving at the best possible decision for the individual patient, shared decision-making is the process whereby a healthcare decision is presented, discussed, deliberated, and negotiated between the provider and patient. In shared decision-making, a physician taps their knowledge about the available evidence and combines it with their experienced clinical judgment to provide balanced information regarding treatment choices. That information then is communicated to the patient – allowing them to clarify and determine their healthcare options in light of their own values and preferences. Shared decision-making evolved from the recognition of a patient’s right to autonomy and reflects ethical medical practice. Recognizing that there are two experts in the room, shared decision-making is the pinnacle of patient-centered care.

Social Determinants of Health

map location iconIn the clinical encounter, patients bring complex social circumstances that are a consequence of their physical and social environment and access to resources. Limitations on those resources determine a patient's ability to prevent illness, maintain health, and recover when illness occurs. Social justice draws our attention to disparities in health and asks not only that we recognize such disparities – it also requires us to actively work toward solutions both for the individual and the population as a whole. Learning about and respecting a patient’s socially-circumscribed access to resources can enhance the patient-doctor relationship. Even with the expanding emphasis on genetics and precision medicine, it remains the case that "it’s zip code not genetic code” – where a person lives as well as their related social experiences have a profound impact on their health.

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