Bioethics is the study of the ethical issues emerging from advances in biology and medicine. It is also moral discernment as it relates to medical policy and practice. Bioethics are concerned with the ethical questions that arise in the relationships among life sciences, biotechnology, medicine and medical ethics, politics, law, theology and philosophy. It includes the study of values relating to primary care and other branches of medicine ("the ethics of the ordinary"). Ethics also relates to many other sciences outside the realm of biological sciences.
Etymology
The term Bioethics (Greek bios, life; ethos, behavior) was coined in 1926 by Fritz Jahr in an article about a "bioethical imperative" regarding the use of animals and plants in scientific research. In 1970, the American biochemist Van Rensselaer Potter used the term to describe the relationship between the biosphere and a growing human population. Potter's work laid the foundation for global ethics, a discipline centered around the link between biology, ecology, medicine, and human values. Sargent Shriver, the spouse of Eunice Kennedy Shriver, claimed that he had invented the word "bioethics" in the living room of his home in Bethesda, Maryland in 1970. He stated that he thought of the word after returning from a discussion earlier that evening at Georgetown University, where he discussed with others a possible Kennedy family sponsorship of an institute focused around the "application of moral philosophy to concrete medical dilemmas."
Purpose and scope
The field of bioethics has addressed a broad swathe of human inquiry; ranging from debates over the boundaries of life (e.g. abortion, euthanasia), surrogacy, the allocation of scarce health care resources (e.g. organ donation, health care rationing), to the right to refuse medical care for religious or cultural reasons. Bioethicists often disagree among themselves over the precise limits of their discipline, debating whether the field should concern itself with the ethical evaluation of all questions involving biology and medicine, or only a subset of these questions. Some bioethicists would narrow ethical evaluation only to the morality of medical treatments or technological innovations, and the timing of medical treatment of humans. Others would broaden the scope of ethical evaluation to include the morality of all actions that might help or harm organisms capable of feeling fear.
The scope of bioethics can expand with biotechnology, including cloning, gene therapy, life extension, human genetic engineering, astroethics and life in space, and manipulation of basic biology through altered DNA, XNA and proteins. These developments will affect future evolution, and may require new principles that address life at its core, such as biotic ethics that values life itself at its basic biological processes and structures, and seeks their propagation. Panbiotic seeks to secure and expand life in the galaxy.
Historian Yuval Noah Harari sees an existential threat in an arms race in artificial intelligence and bioengineering and he expressed the need for close co-operation between nations to solve the threats by technological disruption. Harari said AI and biotechnology could destroy what it means to be human.
Principles
One of the first areas addressed by modern bioethicists was that of human experimentation. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was initially established in 1974 to identify the basic ethical principles that should underlie the conduct of biomedical and behavioral research involving human subjects. However, the fundamental principles announced in the Belmont Report (1979)—namely, respect for persons, beneficence and justice—have influenced the thinking of bioethicists across a wide range of issues. Others have added non-maleficence, human dignity, and the sanctity of life to this list of cardinal values. Overall, the Belmont Report has guided research in a direction focused on protecting vulnerable subjects as well as pushing for transparency between the researcher and the subject. Research has flourished within the past 40 years and due to the advance in technology, it is thought that human subjects have outgrown the Belmont Report and the need for revision is desired.
Another important principle of bioethics is its placement of value on discussion and presentation. Numerous discussion based bioethics groups exist in universities across the United States to champion exactly such goals. Examples include the Ohio State Bioethics Society and the Bioethics Society of Cornell. Professional level versions of these organizations also exist.
Many bioethicists, especially medical scholars, accord the highest priority to autonomy. They believe that each patient should determine which course of action they consider most in line with their beliefs. In other words, the patient should always have the freedom to choose their own treatment.
Medical ethics
Ethics affects medical decisions made by healthcare providers and patients. Medical ethics is the study of moral values and judgments as they apply to medicine. The four main moral commitments are respect for autonomy, beneficence, nonmaleficence, and justice. Using these four principles and thinking about what the physicians’ specific concern is for their scope of practice can help physicians make moral decisions. As a scholarly discipline, medical ethics encompasses its practical application in clinical settings as well as work on its history, philosophy, theology, and sociology.
Medical ethics tends to be understood narrowly as an applied professional ethics; whereas bioethics has a more expansive application, touching upon the philosophy of science and issues of biotechnology. The two fields often overlap, and the distinction is more so a matter of style than professional consensus. Medical ethics shares many principles with other branches of healthcare ethics, such as nursing ethics. A bioethicist assists the health care and research community in examining moral issues involved in our understanding of life and death, and resolving ethical dilemmas in medicine and science. Examples of this would be the topic of equality in medicine, the intersection of cultural practices and medical care, and issues of bioterrorism.
Perspectives and methodology
Bioethicists come from a wide variety of the backgrounds and have training in the diverse array of disciplines. The field contains individuals trained in philosophy such as H. Tristram Engelhardt, Jr. of Rice University, Baruch Brody of Rice University, Peter Singer of Princeton University, Daniel Callahan of the Hastings Center, and Daniel Brock of Harvard University; medically trained clinician ethicists such as Mark Siegler of the University of Chicago and Joseph Fins of Cornell University; lawyers such as Nancy Dubler of Albert Einstein College of Medicine or Jerry Menikoff of the federal Office of Human Research Protections; political scientists like Francis Fukuyama; religious studies scholars including James Childress; and theologians like Lisa Sowle Cahill and Stanley Hauerwas. The field, formerly dominated by formally trained philosophers, has become increasingly interdisciplinary, with some critics even claiming that the methods of analytic philosophy have had a negative effect on the field's development. Leading journals in the field include The Journal of Medicine and Philosophy, The Hastings Center Report, the American Journal of Bioethics, the Journal of Medical Ethics, Bioethics, the Kennedy Institute of Ethics Journal and the Cambridge Quarterly of Healthcare Ethics. Bioethics has also benefited from the process philosophy developed by Alfred North Whitehead. Another discipline that discusses bioethics is the field of feminism; The International Journal of Feminist Approaches to Bioethics has played an important role in organizing and legitimizing feminist work in bioethics.
Many religious communities have their own histories of inquiry into bioethical issues and have developed rules and guidelines on how to deal with these issues from within the viewpoint of their respective faiths. The Jewish, Christian and Muslim faiths have each developed a considerable body of literature on these matters. In the case of many non-Western cultures, a strict separation of religion from philosophy does not exist. In many Asian cultures, for example, there is a lively discussion on bioethical issues. Buddhist bioethics, in general, is characterized by a naturalistic outlook that leads to a rationalistic, pragmatic approach. Buddhist bioethicists include Damien Keown. In India, Vandana Shiva is a leading bioethicist speaking from the Hindu tradition.
In Africa, and partly also in Latin America, the debate on bioethics frequently focuses on its practical relevance in the context of underdevelopment and geopolitical power relations. In Africa, their bioethical approach is influenced by and similar to Western bioethics due to the colonization of many African countries. Some African bioethicists are calling for a shift in bioethics that utilizes indigenous African philosophy rather than western philosophy. Some African bioethicists also believe that Africans will be more likely to accept a bioethical approach grounded in their own culture, as well as empower African people.
Masahiro Morioka argues that in Japan the bioethics movement was first launched by disability activists and feminists in the early 1970s, while academic bioethics began in the mid-1980s. During this period, unique philosophical discussions on brain death and disability appeared both in the academy and journalism. In Chinese culture and bioethics, there is not as much of an emphasis on autonomy as opposed to the heavy emphasis placed on autonomy in Western bioethics. Community, social values, and family are all heavily valued in Chinese culture, and contribute to the lack of emphasis on autonomy in Chinese bioethics. The Chinese believe that the family, community, and individual are all interdependent of each other, so it is common for the family unit to collectively make decisions regarding healthcare and medical decisions for a loved one, instead of an individual making an independent decision for his or her self.
Some argue that spirituality and understanding one another as spiritual beings and moral agents is an important aspect of bioethics, and that spirituality and bioethics are heavily intertwined with one another. As a healthcare provider, it is important to know and understand varying world views and religious beliefs. Having this knowledge and understanding can empower healthcare providers with the ability to better treat and serve their patients. Developing a connection and understanding of a patient's moral agent helps enhance the care provided to the patient. Without this connection or understanding, patients can be at risk of becoming "faceless units of work" and being looked at as a "set of medical conditions" as opposed to the storied and spiritual beings that they are.
Islamic bioethics
Bioethics in the realm of Islam differs from Western bioethics, but they share some similar perspectives viewpoints as well. Western bioethics is focused around rights, especially individual rights. Islamic bioethics focuses more on religious duties and obligations, such as seeking treatment and preserving life. Islamic bioethics is heavily influenced and connected to the teachings of the Qur'an as well as the teachings of Prophet Muhammad. These influences essentially make it an extension of Shariah or Islamic Law. In Islamic Bioethics, passages from the Qur'an are often used to validate various medical practices. For example, a passage from the Qur'an states "whosoever killeth a human being … it shall be as if he had killed all humankind, and whosoever saveth the life of one, it shall be as if he saved the life of all humankind." This excerpt can be used to encourage using medicine and medical practices to save lives, but can also be looked at as a protest against euthanasia and assisted suicide. A high value and worth is placed on human life in Islam, and in turn human life is deeply valued in the practice of Islamic bioethics as well. Muslims believe all human life, even one of poor quality, needs to be given appreciation and must be cared for and conserved.
In an effort to react to new technological and medical advancements, informed Islamic jurists regularly will hold conferences to discuss new bioethical issues and come to an agreement on where they stand on the issue from an Islamic perspective. This allows Islamic bioethics to stay pliable and responsive to new advancements in medicine. The standpoints taken by Islamic jurists on bioethical issues are not always unanimous decisions and at times may differ. There is much diversity among Muslims varying from country to country, and the different degrees to which they adhere by Shariah. Differences and disagreements in regards to jurisprudence, theology, and ethics between the two main branches of Islam, Sunni and Shia, lead to differences in the methods and ways in which Islamic bioethics is practiced throughout the Islamic world. An area where there is a lack of general consensus is brain death. The Organization of Islamic Conferences Islamic Fiqh Academy (OIC-IFA) holds the viewpoint that brain death is equivalent to cardiopulmonary death, and acknowledge brain death in an individual as the individual being deceased. On the contrary, the Islamic Organization of Medical Sciences (IOMS) states that brain death is an "intermediate state between life and death" and do not acknowledge a brain dead individual as being deceased.
Islamic bioethicists look to the Qur'an and religious leaders regarding their outlook on reproduction and abortion. It is firmly believed that reproduction of a human child can only be proper and legitimate via marriage. This does not mean that a child can only be reproduced via sexual intercourse between a married couple, but that the only proper and legitimate way to have a child is when it is an act between husband and wife. It is okay for a married couple to have a child artificially and from techniques using modern biotechnology as opposed to sexual intercourse, but to do this out of the context of marriage would be deemed immoral.
Islamic bioethics is strongly against abortion and strictly prohibits it. The IOMS states that "from the moment a zygote settles inside a woman's body, it deserves a unanimously recognized degree of respect." Abortion may only be only permitted in unique situations where it is considered to be the "lesser evil."
Feminist approaches to bioethics
Feminist approaches to bioethics critiques the fields of bioethics and medicine for its lack of inclusion of women’s and other marginalized group's perspectives. This lack of perspective from women is thought to create power imbalances that favor men. These power imbalances are theorized to be created from the androcentric nature of medicine. One example of a lack of consideration of women is in clinical drug trials that exclude women due to hormonal fluctuations and possible future birth defects. This has led to a gap in the research on how pharmaceuticals can affect women. Feminist bioethicists call for the necessity of feminist approaches to bioethics because the lack of diverse perspectives in bioethics and medicine can cause preventable harm to already vulnerable groups.
This study first gained prevalence in the field of reproductive medicine as it was viewed as a "woman's issue". Since then, feminist approaches to bioethics has expanded to include bioethical topics in mental health, disability advocacy, healthcare accessibility, and pharmaceuticals. Lindemann notes the need for the future agenda of feminist approaches to bioethics to expand further to include healthcare organizational ethics, genetics, stem cell research, and more.
Notable figures in feminist bioethics include Carol Gillian, Susan Sherwin, and the creators of the International Journal of Feminist Approaches to Bioethics, Mary C. Rawlinson and Anne Donchin. Sherwin's book No Longer Patient: Feminist Ethics in Health Care (1992) is credited with being one of the first full-length books published on the topic of feminist bioethics and points out the shortcomings in then-current bioethical theories. Sherwin's view point incorporates models of oppression within healthcare that intend to further marginalize women, people of color, immigrants, and people with disabilities. Since created in 1992, The International Journal of Feminist Approaches to Bioethics has done much work to legitimize feminist work and theory in bioethics.
Ethical issues in gene therapy
Gene therapy involves ethics, because scientists are making changes to genes, the building blocks of the human body. Currently, therapeutic gene therapy is available to treat specific genetic disorders by editing cells in specific body parts. For example, gene therapy can treat hematopoietic disease. There is also a controversial gene therapy called "germline gene therapy", in which genes in a sperm or egg can be edited to prevent genetic disorder in the future generation. It is unknown how this type of gene therapy affects long-term human development. In the United States, federal funding cannot be used to research germline gene therapy.
Education
Bioethics is taught in courses at the undergraduate and graduate level in different academic disciplines or programs, such as Philosophy, Medicine, Law, Social Sciences. It has become a requirement for professional accreditation in many health professional programs (Medicine, Nursing, Rehabilitation), to have obligatory training in ethics (e.g., professional ethics, medical ethics, clinical ethics, nursing ethics). Interest in the field and professional opportunities have led to the development of dedicated programs with concentrations in Bioethics, largely in the United States and Europe, offering undergraduate majors/minors, graduate certificates, and master's and doctoral degrees. Every medical school in Canada teaches bioethics so that students can gain an understanding of biomedical ethics and use the knowledge gained in their future careers to provide better patient care. Canadian residency training programs are required to teach bioethics as it is one of the conditions of accreditation, and is a requirement by the College of Family Physicians of Canada and by the Royal College of Physicians and Surgeons of Canada.
Criticism
As a study, bioethics has also drawn criticism. For instance, Paul Farmer noted that bioethics tends to focus its attention on problems that arise from "too much care" for patients in industrialized nations, while giving little or no attention to the ethical problem of too little care for the poor. Farmer characterizes the bioethics of handling morally difficult clinical situations, normally in hospitals in industrialized countries, as "quandary ethics". He does not regard quandary ethics and clinical bioethics as unimportant; he argues, rather, that bioethics must be balanced and give due weight to the poor.
Additionally, bioethics has been condemned for its lack of diversity in thought, particularly with regards to race. Even as the field has grown to include the areas of public opinion, policymaking, and medical decisions, little to no academic writing has been authored concerning the intersection between race–especially the cultural values imbued in that construct–and bioethical literature. John Hoberman illustrates this in a 2016 critique, in which he points out that bioethicists have been traditionally resistant to expanding their discourse to include sociological and historically relevant applications. Central to this is the notion of white normativity, which establishes the dominance of white hegemonic structures in bioethical academia and tends to reinforce existing biases. However, differing views on bioethics' lack of diversity of thought and social inclusivity have also been advanced. Thought historian Heikki Saxén has argued that the diversity of thought and social inclusivity are the two essential cornerstones of bioethics, albeit they have not been fully realized.
These points and critiques, along with the neglect of women's perspectives within bioethics, have also been discussed amongst feminist bioethical scholars.