NURS458:

In this lesson you will be exposed to the historical evolution of ethics theories and ethical decision making.  Ethics principles covered in this lesson will prepare you for ethics case analyses later in the course and help you with ethical decision making in your practice. 

Lesson 1 Objectives

1. Explore models for ethics decision-making and professional codes of conduct including advocacy and confidentiality.
2. Recognize ethical issues in healthcare informatics.

Lesson Readings and Activities

• By the end of this lesson, make sure you have completed the readings and activities found in the Course Schedule for Lesson 1.

 

Introduction

As we followed the actual events or were entertained by the movie Apollo 13 (Howard, R., 1995), we all watched the astronauts trying against all odds to bring their crippled spaceship back to earth.  The speed of their travel was incomprehensible to most of us, and the task of bringing that spaceship back to earth seemed nearly impossible.  They were experiencing a crisis never imagined by the experts at NASA; and they were making up their survival plan moment by moment.  What brought them back to earth safely? Surely we must give credit to the technology and the space ship's ability to withstand the trauma it experienced. But what amazed us most was the traditional non-technological tools, skills, and supplies that were used in new and different ways to stabilize the spacecraft’s environment and keep the astronauts safe while traveling toward their uncertain future.

This sense of constancy in the midst of change serves to stabilize our experience in many different life events and contributes to our survival of crisis and change.  This rhythmic process is also vital to the healthcare system’s stability and survival in the presence of the rapidly changing events of the Information Age.

Nobody can dispute the fact that the Information Age is changing healthcare in ways that will not be fully recognized and understood for years.   The change is paradigmatic and every expert who addresses this change reminds health care professionals of the need to  “go with the flow” of rapid change or be left behind. 

As with any paradigm shift, a new way of viewing the world brings with it some of the enduring values of the previous worldview. As healthcare journeys into the brave new world of digital communications, it will bring along some familiar tools and skills recognized in the form of values, such as privacy, confidentiality, autonomy, and nonmaleficence. While these basic values remain unchanged, the standards for living out these values will take on new meaning as health professionals are confronted with new and different moral dilemmas.  Ethical decision-making frameworks will remain constant, but the context for examining these moral issues will become increasingly complex.

This brief overview will provide you with some familiar ethical concepts to take with you on your challenging journey into the increasingly complex future of healthcare informatics. We will briefly define ethics and bioethics and examine the evolution of ethical approaches from the “Hippocratic ethic” era through “principlism” and to the current “antiprinciplism” movement of ethical decision-making. We encourage you to read more about these approaches as you review the cases presented in this course and as you journey further into the unfolding era of healthcare informatics.

Key Terms Defined

Ethics

Ethics is a process of systematically examining varying viewpoints related to moral questions of right and wrong. Ethicists have defined the term in a variety of ways with each reflecting a basic theoretical philosophical perspective.
Beauchamp and Childress (1994, p.4) refer to ethics as a generic term for various ways of understanding and examining the moral life.  Ethical approaches to this examination may be: 

• Normative, presenting standards of right or good action;
• Descriptive, reporting what people believe and how they act; or
• Explorative, analyzing the concepts and methods of ethics. 

Husted and Husted (1995, p. 3) emphasize a practice-based ethics, stating “...ethics examines the ways men and women can exercise their power in order to bring about human benefit- the ways in which one can act in order to bring about the conditions of happiness.”
The Markula Center for Applied Ethics (1998) posed the question ‘What is Ethics?’ and proceeded to answer this question with a two part response.

• “First, ethics refers to well-based standards of right and wrong that prescribe what human rights ought to do, usually in terms rights…. and
• “Secondly, ethics refers to the study and development of one's ethical standards.”

Regardless of the theoretical definition, common characteristics regarding ethics are its dialectical, goal-oriented approach to answering questions that have the potential of multiple acceptable answers.

Please read the definitions and discussion presented at this website.

Bioethics

• Bioethics is defined as the study and formulation of healthcare ethics.
• Bioethics takes on relevant ethical problems experienced by health care providers in the provision of care to individuals and groups.
• Husted and Husted (1995, p.7) state the fundamental background of bioethics which forms its essential nature is:
  • The nature and needs of humans as living, thinking beings;
  • The purpose and function of the health care system in a human society; and
  • An increased cultural awareness of human beings’ essential moral status
• Bioethics arose in the 1970s as health care began to change its focus from a mechanistic approach of treating disease to a more holistic approach of treating people with illnesses.
• As technology advances increased, recognition and acknowledgment of rights and the needs of individuals and groups receiving this high tech care also increased.

Ethical Issues and Morals

• Ethical issues arise when moral dilemmas raise questions that cannot be answered with a simple, clearly defined rule, fact or authoritative view.
• Morals refer to social convention about right and wrong human conduct that are so widely shared that they form a stable (although usually incomplete) communal consensus (Beauchamp, p.4).
• Moral dilemmas occur when:  
  • some evidence indicates that an act is morally right and some evidence indicates the act is morally wrong; yet the evidence on both sides is inconclusive; or
  • an individual believes that on moral grounds, he or she cannot commit an act (Beauchamp, p. 11).

Ethical Decision-making

• Refers to the process of making informed choices about ethical issues based on a set of standards differentiating right from wrong.
• Reflects an understanding of the principles and standards of ethical decision-making, as well as philosophical approaches to ethical decision-making;
• Requires a systematic framework for addressing the complex and often controversial moral questions.

Think About This...

As we move into the high-speed era of digital communications, the rights and the needs of individuals and groups will be of utmost concern to all healthcare professionals.  The changing meaning of ‘communication’ alone will bring with it new concerns by healthcare professionals for protecting clients’ rights of confidentiality, privacy, and autonomy. The concept of nonmaleficence, or do no harm, will be broadened to include those individuals and groups we may never see in person, but with whom we will enter into a professional relationship of trust and care. Systematic and flexible ethical decision-making abilities will be essential for all health care professionals.

 

Theoretical Approaches to Health Care Ethics

Theoretical approaches to health care ethics have evolved in response to societal changes. In a thirty year retrospective article for the Journal of the American Medical Association, Edmund Pellegrino (1993) traced the evolution of health care ethics from the “Hippocratic ethic” through “principlism” and into the current “antiprinciplism” movement.

Hippocratic Tradition

• emerged from relatively homogenous societies where beliefs were similar and the majority of societal members shared common values.
• emphasis was on duty, virtue, and gentlemanly conduct.

Principlism

• As societies became more heterogeneous, members began experiencing a diversity of incompatible beliefs and values.
• Principlism emerged as a foundation for ethical decision-making.
• Principles were expansive enough to be shared by all rational individuals, regardless of their background and individual beliefs.
• This approach continued into the 20th century and was popularized by two bioethicists, Tom Beauchamp and James Childress in the last quarter of the century. 

Beauchamp and Childress (1977, 1994)

• popularized the principlist approach over the last twenty-five years
• define principles as general guides that leave considerable room for judgment in specific cases and provide substantive guidance for the development of more detailed rules and policies (1994, p.38)
• proposed four principles including respect for autonomy, nonmaleficence, beneficence, and justice.

Nonmaleficence asserts an obligation not to inflict harm intentionally and forms the framework for the standard of due care to be met by any professional.  (Beauchamp and Childress, 1994, p. 189)

• Obligations of nonmaleficence are obligations of not inflicting harm and not imposing risks of harm.
• Negligence, a departure from the standard of due care toward others, includes intentionally posing risks that are unreasonable as well as unintentionally, but carelessly, imposing risks.

Autonomy refers to the individual’s freedom from controlling interferences by others and from personal limitations that prevent meaningful choices, such as adequate understanding. Two conditions are essential for autonomy:

• liberty, the independence from controlling influences; and
• the individual’s capacity for intentional action (p. 121).

Beneficence refers to actions performed that contribute to the welfare of others. There are two principles of beneficence:

• Positive beneficence requires the provision of benefits
• Utility requires that benefits and drawbacks be balanced (p. 259).

Justice refers to the fair, equitable, and appropriate treatment in light of what is due or owed to person.  Distributive justice refers to fair, equitable, and appropriate distribution in society determined by justified norms that structure the terms of social cooperation (p. 327).  

Beauchamp and Childress also suggest three types of rules for guiding actions (rules are more restrictive in scope and more specific in content).

• Substantive rules are rules of truth telling, confidentiality, privacy, fidelity, and rules pertaining to the allocation and rationing of health care, omitting treatment, physician-assisted suicide, and informed consent.
• Authority rules are those rules regarding who may and should perform actions.
• Procedural rules establish procedures to be followed.

Anti-Principlism

The anti-principlism movement has emerged with the expansive technological changes and the tremendous rise in ethical issues accompanying these changes. Opponents of principlism include those who claim that its principles do not represent a theoretical approach and those who claim that its principles are too far removed from the concrete particularities of everyday human existence.

Casuist Approach 

This case-based approach to ethical decision-making grew out of the concern for more concrete methods of examining ethical issues.  One casuist proponent, Albert Jonson ( 1991), prefers particular and concrete paradigms and analogies over the universal and abstract theories of principlism.

 

Symphonology

"A Bioethical Decision-Making Guide: A Synopsis of Symphonology"

By Dr. Barbara Brown 

Ethical decisions in health care are those decisions that profoundly affect the lives of people. In ancient times Ovid (ed. 1983) wrote about abortion and Socrates (Plato, trans. 1995) willingly accepted execution rather than abandon his values to keep his just agreements. Both of these are good examples that remind us that bioethical dilemmas have been faced by all ages. As present day health care professionals we are faced with bioethical dilemmas in all facets of the health care arena, from administration to the bedside. In order to deal with these decisions, we need a decision-making process that allows us to address these dilemmas within a rational, justifiable ethical framework. The bioethical theory of Symphonology (Husted & Husted, 1995) gives us just such a framework.

Symphonology is based on the supposition that an agreement exists between all rational beings. This agreement is implicit in nature and simply put it is the agreement not to aggress. In other words, I will not act against you and you will not act against me. Without this implicit agreement we would not be willing to drive a car or leave the protective walls of our homes. We call this freedom from aggression a negative right. This agreement is the basis for the agreements that are formed between healthcare professionals and patients, administrators and employees, health care institutions and the community they serve. In each instance of the agreement, the professional assumes the greater burden of the agreement. For example, the healthcare professional agrees to do for the patient what the patient would do, if able. The patient agrees to be the patient, to fulfill his responsibilities in the treatment plan and not place any unreasonable demands on the healthcare professional. The administrator agrees to treat employees with equal fairness and the employees agree to perform their specified functions within the organization. These agreements are contingent upon the bioethical standards of fidelity, beneficence, objectivity, self-assertiveness, freedom and autonomy. Agreements, implicit or explicit, would not be made if we thought that the person with whom we were agreeing would not be faithful to the agreement (fidelity); who would enter into any agreement unless there was some "good" to be achieved (beneficence); agreements require consent and consent can be obtained only through the sharing of truthful information (objectivity); unless a person was able to control his own time and effort an agreement could not be made (self-assertiveness); an agreement is valid only if the parties were not coerced or forced in any way; they must be given the opportunity to choose freely (freedom); and lastly no one would make an agreement if it meant losing their individuality, their uniqueness (autonomy).

When we bring together this knowledge about agreements with the context of the situation, we have the Symphonological framework to guide ethical decision-making. Hospers (1972), a philosopher in the not so distant past, said, "in ethics everything is contextual." The context of the situation is the objective reality of the situation as it exists at the time and place in which the decision must be made and it includes the capabilities of those who are relevantly involved. Certainly this is one of the strong points of Symphonology. When decisions are made considering the context of the situation we are not utilizing a lone concept such as "duty" or "the greatest good for the greatest number."  We are not utilizing rules, cultural standards, personal beliefs, or emotions to make a decision. Instead, we are using the situation as it exists and the bioethical standards to come to a justifiable, rational, ethical decision. 

Symphonology helps to unravel ethical dilemmas by providing healthcare professionals with an uncomplicated framework for ethical decision-making. 

SYMPHONOLOGY 

In general, Ethics can be defined as a system of standards to motivate, determine and justify actions that are taken in pursuit of vital and fundamental goals. It is the study of the good life, the way to bring about happiness. It has to do with what is important, our purposes, and what makes a long-term difference in our lives. To be more specific, Symphonology is defined as a practiced-based ethic that is patient centered. It is an individualistic ethic that unites the reason why a decision is made with the action itself and the foreseeable consequences of that action. It is a professional ethic that guides a nurse's interaction with patients, one human being with another. It demands that the nurse act by reasoning; that we should reason "to" a decision starting with the objective reality of the situation rather than reason "from" a decision, which means that we are starting with our own subjectivity, unquestioned beliefs, or feelings. The concept of acting according to reason is what makes ethics possible.

"In ethics everything is contextual and the context of every action is unique and unduplicable with the result that even a small difference between two situations may yield a difference in our moral verdict" (Hospers, 1972, p.63). Symphonology considers the situation in which the ethical action takes place and the knowledge the nurse possesses to bring to that particular situation. There is an interweaving of the "context of the situation" and the "context of knowledge" that provides the framework in which the ethical decision is made.

Basic to the symphonological decision-making process is the concept of agreement. As a matter of fact, Symphonology means the study of the agreement. We can make agreements because as humans we are rational beings, reasoning organisms, that are unique, free, objective, self-assertive, benefit seeking, and faithful. As unique persons we are unlike anyone else in the world; we are self-determined, we can exercise our power to pursue long term purposes; dealing with objective reality, controlling our own time and effort, pursuing values in order to live, being faithful to life. The most fundamental of agreements between humans, is the agreement of nonaggression. This implicit agreement between people is the result of a shared state of awareness and is the basis on which any interaction takes place. The agreement between people not to aggress is the simplest and most basic ethical context between humans; it determines what the ethical interaction ought to be because no interaction is even possible without this agreement. In an agreement both parties agree to live up to the commitment to the other. The nurse-patient agreement evolves from this most basic of agreements.

The agreements we make as ethical professionals contain six implicit agreements that are described as the bioethical standards. The bioethical standards are lenses to analyze and understand ethical situations; they make it possible to resolve ethical dilemmas and to see and understand other people. The six bioethical standards are as follows: fidelity, beneficence, self-assertion, objectivity, freedom, and autonomy.

Fidelity is faithfulness/commitment to the agreement. It is the agreement to adhere to the terms of the agreement. It is persistence in seeking to gain benefit or to avoid harm. Would we enter into an agreement unless we thought that the parties involved were going to be faithful to the agreement?

Beneficence means to do good, at least do no harm. The purpose of any agreement is to attain benefit. Would we enter into an agreement that was not beneficial?

Self-assertion or privacy is a person's power to control his own time and effort. If we could not control our own time and effort then we would not be able to form and carry through agreements.

Objectivity is the reality of the situation. It is a person's capacity to be aware of things as they are and to be able to act on this awareness. In order to exercise our rationality, we need to know the reality of the situation. A rational decision is not possible without objective knowledge of the situation.

Freedom is self-determination. It is a person's capacity to take independent action based on his evaluation of his situation. Freedom is understanding what we can and cannot do. We do not have unrestricted freedom. It is limited by the freedom of others.

Autonomy is made up of the essential character structures of an individual person. It is uniqueness, those qualities that make someone the unique person that he is. Autonomy includes those qualities that we share with as humans and those qualities that make us different.

An effective ethical agent would always do the right thing at the right time for the right reason with the right person to the right extent in the right way. This means keeping the agreement, staying in the context of the situation, using knowledge appropriately, and applying the bioethical standards to guide decisions and actions.

 

The Husted Bioethical Decision-Making Model

Husted and Husted (1995) are leading proponents of this practice-based bioethical approach to ethical decision-making called Symphonology (see above). 

Husted and Husted do not reject principles but choose to frame the use of  values as standards to make them useful in a discussion of bioethics (1995, p. 55).
Principles mean “basic or necessary truths”.

• They have a sense of permanency.
• They do not change with the changing situation.

Standards are the product of agreements about the existence or acceptance of a value.

• They are impermanent.

The Husted Bioethical decision-making Model centers on the health care professional’s implicit agreement with patient/client (Husted and Husted, 1995,p. 19), and is based on six contemporary bioethical standards: 

1. autonomy,
2. freedom,
3. veracity,
4. privacy,
5. beneficence,
6. fidelity.

Virtue Ethics 

This approach emphasizes the virtuous character of individuals who make the choices. A virtue is any characteristic or disposition we desire in others or ourselves. It comes from the Greek word aretai  meaning excellence and refers to what we expect of ourselves and others.

• Virtue ethicists emphasize the ideal situation and attempt to identify and define ideals. 
• Virtue ethics dates back to Plato and Socrates.

Socrates believed that "Virtue is knowledge."

• Thus, the cause of any moral weakness was not a matter of character flaws but of ignorance.
• A person acts immorally because they do not know what is really good for them.
• A person can be overpowered by immediate pleasures and forget to consider the long term consequences.

Plato emphasized that to lead a moral life and not succumb to immediate pleasures and gratification, one must have a moral vision. He identified  four cardinal virtues:

• wisdom -  man’s rational approach to problem solving whereby the individual uses reasoning capacities to address real-life dilemmas.
• courage - the spiritual virtue of man or the capacity to do what is right, even when you do not want to
• self-control - refers to the ability not to do what you really want to
• justice -overrides all

Aristotle’s Nicomachean principles also contribute to virtue ethics. 

• Virtues are connected to will and motive since the intention is what determines if one is acting virtuously or not. 
• Ethical considerations, according to his Eudaimonistic principles address the question, "What is it to be an excellent person?" For Aristotle this ultimately means acting in a temperate manner according to a rational mean between extreme possibilities. (The Doctrine of the Golden Mean).

Virtue ethics has seen resurgence in the last thirty years. Goodman( 1998) credits Edmund Pellegrino and Thomasma with the resurgence of virtue ethics in the field of bioethics..  Pellegrino and Thomasma (1993) maintain that virtue theory should be related to other theories within comprehensive philosophy of the health professions. They argue that moral events are composed of four elements—the agent, the act, the circumstances, and the consequences—and that a  variety of theories must be interrelated to account for different facets of moral judgment.  

Care Ethics

Benjamin and Curtis base their framework on "care ethics" (Goodman, 1998, p. 5) and propose that "critical reflection and inquiry in ethics involves the complex interplay of a variety of human faculties, ranging from empathy and moral imagination on the one hand to analytic precision and careful reasoning on the other" ( Benjamen, M. and Curtis, J. 1992).

• Care ethicists are less guided by rules and focus on the needs of others and one’s responsibility to meet those needs.  
• The central focus is responsiveness to the needs of others that dictates providing care, preventing harm and maintaining relationships.
• As opposed to the above theories that focused on the individual’s rights, an ethic of care emphasizes a personal part of an interdependent relationship that affects how decisions are made.
• In this theory the specific situation and context in which the person is embedded becomes a part of the decision-making process.

Consensus-Based Approach

Finally, Martin (1999) proposes a consensus-based approach to bioethics.  Martin claims that American bioethics harbors a variety of ethical methods that emphasize different ethical factors, including principles, circumstances, character, interpersonal needs, and personal meaning. Each method reflects an important aspect of ethical experience, adds to the others, and enriches the ethical imagination. Hence, the challenge and the opportunity. Working with these methods as a group, the knowing bioethicist can transmute them into something new with value through the process of building ethical consensus. Diverse ethical insights can be integrated to support a particular bioethical decision, and   that decision can be understood as a new, ethical whole.

 

Ethics Terms Defined by the Experts

Ethics

Dr. Goodman: the study of concepts used in reasoning about human action (e.g., “good,” “wrong,” “duty,” etc.

Dr. Husted: A system of standards to motivate, determine, and justify actions taken in the pursuit of vital and fundamental goals (Husted & Husted, 2001).

Dilemma

Dr. Goodman: A moral dilemma (to distinguish it from the formal dilemmas that arise in logic), is a situation in which equally obligatory actions are in conflict; such that no matter what one does, one does wrong. The term is overused in contemporary bioethics, where it is sometimes taken to mean merely “challenge” or “conflict” or “problem” or even  “issue.”      

Dr. Husted: A situation in which one is faced with a conflict of purposes or with purposes whose value is not clear (Husted & Husted, 2001).

Bioethics

Dr. Goodman: that branch of ethics concerned with health care, but broader than “healthcare ethics” in that it includes human subjects and animal research, genetics, etc.

Dr. Husted: A system of standards arising with the professional agreement to determine, sanction, and justify the interactions of biomedical professionals and patients (Husted & Husted, 2001).

Information Science

Dr. Husted: Information science is the science that is concerned with the gathering, manipulation, classification, and retrieval of recorded knowledge (American Heritage Dictionary, 1997).

Bioinformaticethics

Dr. Brown: A system of standards arising from the professional agreement to determine, sanction, and justify the interaction of biomedical professional and patient, particularly in the areas concerning the collection, storage, retrieval, and dissemination of data.

Dr. Goodman: I would not willingly use such a word, but if pressed would say it refers to the ethical issues that arise in bioinformatics, which is the domain shaped by computers and genomics.

Dr. Husted: Information, therefore informatics, is an undefined term.  Information begins with the objects that inform us, it proceeds through the physical events that affect the senses and through which we form our first level process, and ends in the forming of concepts.  Each level is, customarily, signified by the term “information”.

Ethics, like every basic branch of philosophy, is distorted by the opinions of the source from which ethical information proceeds.  There are several dozen systems of ethics.  Each, for one reason or another, is in conflict with the others.  The way information concerning ethics is obtained through these systems is controversial and ambiguous in the extreme, e.g.:

Deontology – natural law/innate ideas.

Utilitarianism – a mathematical equation applied to sources and beneficiaries of pleasure.

Emotivism – objective information is impossible, therefore ethics is a free creation of the imagination.

Relativism – the mores of society or culture

Health Care Ethics

Dr. Husted: A system of standards to motivate, determine, and justify actions taken in the realization of professional obligations.

Dr. Goodman: The investigation of questions of right/wrong, praiseworthyness/blameworthyness, etc. that arise in the provision of healthcare. Generally related to clinical issues

Ethical Informatics

Dr. Husted: We will define as ethical information gathered, manipulated, classified, and retrieved as applied to ethical dilemmas.

Dr. Goodman: ?? Informatics conducted ethically?? Not sure why this term is here, it not being a term or art or otherwise having any currency.

 

Dr. Goodman's References

Gert B.  Morality: A New Justification of the Moral Rules.. New York, Oxford, 1989.

Gert B, Culver CM, Clouser KD. Bioethics: A Return to Fundamentals. New York, Oxford, 1997.

 

FAQ’s by Experts

1) Is personal electronic mail private?

Dr. Brown: Personal electronic mail should be as private as regular mail correspondence. I do not have expertise in the area of electronic mail but I would imagine that even password protected does not preclude invasion of that privacy.

Dr. Goodman: Generally not, though this is actually an empirical question — such that I believe the answer is “generally not.” The question whether it should be private is another matter.

Dr. Husted: Yes.  The ethical right to privacy avoids conflict and, like all rights, promotes harmony.  And here we take harmony to be the standards of ethical judgment.

 

2) Are ethical issues involving computers different from other ethical situations?

Dr. Brown: Ethical dilemmas (I prefer to use the term dilemmas instead of issues because an "issue" is noncontextual) involving computers can be guided by Symphonology just as any other situation.

Dr. Goodman: Some are and some are not. The need for confidentiality was perhaps first articulated by Hippocrates, so if anything is different it is in the ways it can be violated. It might be that the use of computers for clinical decision support and data mining in research raise new ethical issues.

Dr. Husted: Not fundamentally, or the term “ethics” becomes ambiguous.

 

3) As medical informatics quickens the pace of what's possible, will bioinformaticethics help us decide what's right?

Dr. Brown: Bioinformaticethics, especially if one is utilizing Symphonology as the decision- making framework, can very well help us to decide what is right. It must be understood that ethics does not promise ballistic accuracy in any decision. The goal of any ethical system should be that a rational, justifiable decision was reached.

Dr. Goodman: Ethics is always there to help us decide what is right. Indeed, the measure of an adequate ethical system or theory or approach is in part its ability to be useful in novel contexts. A comprehensive, robust theory of ethics should be up to the task of addressing a broad variety of new applications and challenges at the intersection of informatics and health care.

Dr. Husted: Since information concerning an ethical dilemma, to be useful, must be kept in the context of the dilemma, if the idea that the resolution of dilemmas can be had at the “push of a button” bioinformatics might deflect one from deciding what is right.  If bioinformatics would gather, manipulate, classify, and retrieve information, effective reasoning that has been applied to various sorts of ethical dilemmas, it would be useful in helping us to decide what is right in a given context. 

 

4) Does a patient have the right not to be entered into the electronic healthcare database of her/his provider?

Dr. Brown: I think the question can be answered by asking, does a patient have a right to not have a medical record? I think not. The confidentiality applied to the electronic database should be the same as that which is applied to the paper medical record.

Dr. Goodman: For a number of reasons —not least that they improve patient care — health providers are generally duty bound to store patient information in electronic databases. But there are perhaps some special circumstances in which, at least temporarily, a patient might be able to withhold information from the record. This is true of paper records, too, however, and the general rule there is that patient records must be comprehensive and accurate. However, providers are also increasingly required to disclose the existence of such databases and, beyond patient care, patients do have some rights to prevent the use of their information (e.g., certain kinds of research).

Dr. Husted: If a patient lacks this right, then it is a right he has been denied arbitrarily.  According to any system that treats individual rights as arbitrary, this would be acceptable. But if rights are grounded in some non-arbitrary manner, it surely would not. 

 

5) Should an individual's genetic data be shared with pharmaceutical companies and other organizations? Who will guard the privacy of this data for those individual's from whom it is collected?

Dr. Brown: Genetic information should only be shared with other organizations if the individual gives consent. The privacy of this data should be protected by the collecting agency.

Dr. Goodman: Information of any sort should not be shared with any person or entity without patient consent. So the answer here is, “Sure — if patient consent is obtained.” This requires that the patient be told of the uses to which the information will be put. Once information is shared, it is up to the new custodians to safeguard its privacy as if it were theirs alone.

Dr. Husted: Certainly not without the individual’s permission.  The second question is beyond the scope of our expertise. 

 

6) Is the Internet free? Should we provide Internet-based information to our patients?

Dr. Brown: The Internet is not free. Not only must a person have access to the appropriate hardware but they must also have an Internet provider. Internet-based information for our patients is wonderful as long as we are sure about the accuracy of the information and the patient is able to access the Internet. We must be prepared to provide patients with health information in a form that is appropriate to their capabilities.

Dr. Goodman: To the extent that public libraries or other organizations provide Internet access, yes. The question whether to share on-line information with patients should be answered the same as regarding any other medium: Is it reliable and accurate? Peer reviewed? Is it collected, maintained and presented by those with a conflict of interest (or the appearance of a conflict of interest)? Does it provide advice best or more appropriately provided by a clinician? A nurse, psychologist, physical therapist or physician must be familiar with the information before commending it to patients.

Dr. Husted: We should provide all the information possible to our patients. 

 

7) Should healthcare professionals be required to take ethics courses in their basic education curriculums?

Dr. Brown: Yes, healthcare professionals should be required to take an ethics course during their basic education.  The needs and conditions of the people who enter into the health care context do not allow for purposeless and/or arbitrary decisions. Patients are vulnerable and the threat to their values is very real. Without an ethical background, biomedical professionals may be tempted to take actions that can be justified only through rationalization. An ethical decision-making model such as Symphonology motivates and guides ethical actions; actions that pursue vital and fundamental goals and involve the rights of others.

Dr. Goodman: They should be required to take interesting, high-quality ethics courses. Alas, much ethics as it is taught in nursing and medicine curricula is made to be boring, punitive or over simplistic. Ethics is exciting, and competent practitioners need to know about ethical issues and solutions in their professions.

Dr. Husted: This entirely depends upon the course and the teacher.  An ethicist has been defined, with tongue in cheek, as “an expert in the arbitrary and ungrounded opinions of other people.”  Odds are they would be taking courses in the arbitrary and ungrounded opinions of other people.  Study after study has shown that 6 months after taking an ethics course, what professionals have learned has no influence on their professional interactions. 

 

8) Should healthcare professionals be required to have informatics competence? Who should decide what they should be competent in?

Dr. Brown: Informatics competence should be required as it pertains to the healthcare professional's academic work and "job skills" therefore informatics competence should be the responsibility of the professional.

Dr. Goodman: They should be competent to use the tools needed to hew or exceed the standard of care in their profession. To the extent that information technology is reshaping healthcare practices, or promises to improve patient care, then healthcare professionals must be trained and be competent in the use of these tools. This competency needs to be evaluated by instruments developed by professional groups or societies; this will help (though not guarantee) consistency and quality

Dr. Husted: Only if this would strengthen health care professional/patient interaction in ways that are most efficient or that could not be achieved otherwise.  Anyone who can objectively prove the case – should.  Not who – what – their ethical responsibilities are. 

 

9) Should healthcare professionals be required to understand information science and the impact of information technology on healthcare?

Dr. Brown:  In order for the healthcare professional to be a patient advocate it is necessary for the professional understand how information technology impacts the patient and the subsequent delivery of care.

Dr. Goodman: Information science and its effect on healthcare are interesting and important … it follows that IT and its ethical, social and legal implications (ESLI) should be incorporated into professional and post-professional (continuing education) training. 

Dr. Husted: This would depend on the success of informatics science at objectively proving its value. 

 

Dr. Goodman's References

Gert B.  Morality: A New Justification of the Moral Rules.. New York, Oxford, 1989.

Gert B, Culver CM, Clouser KD. Bioethics: A Return to Fundamentals. New York, Oxford, 1997.

 

Commentary on the 'Ten Commandments for Computer Ethics'

by N. Ben Fairweather

As with all short codes of ethics, this code is short of detail of sorts which would give practical guidance in many situations. This is an inevitable consequence of the brevity that at the same time makes the code easy to remember and refer to. 

It is easy to find exceptions to the short dos and don'ts of the 'ten commandments' (see below). The ease with which these can be found, described and repeated gives rise to the possibility of generally good guidance falling into unwarranted disrepute: indeed, every time such a short code of ethics falls into unwarranted disrepute, the whole idea of acting morally is brought into disrepute too. 

The 'ten commandments' might possibly be a useful starting point for computer ethics, but they definitely are not a complete code - so just because you keep within the ten commandments does not mean that what you are doing is OK.

Additionally, some of the 'ten commandments' appear to be decidedly trivial compared to the others: yet the listing suggests that all ten are equally important.

1. Thou shalt not use a computer to harm other people.
   
   Is it just people that we should not harm? What about the environment and animals (the environment is clearly harmed by the production and use of computers, and by the disposal of waste computers)?
2. Thou shalt not interfere with other people's computer work.
3. Thou shalt not snoop around in other people's files.
   
   What if the 'other people' are using the computer to do harm? Should we still refrain from interfering? Should computer files be private even if they are being used as part of a criminal conspiracy?
4. Thou shalt not use a computer to steal.
5. Thou shalt not use a computer to bear false witness.
   
   What if stealing or bearing false witness is the only way to prevent someone from doing a much greater harm?
6. Thou shalt not use or copy software for which you have not paid.
   
   This is too simplistic. Many of us use software on University or business computer systems where somebody else has paid for us to use the software. Beyond this, though, what if the software house that produced the software has used immoral methods to gain an excessively large share of the software market, which thus prevents competition, and enables it to over-charge for software? Under these circumstances is it wrong to use or copy software without paying the software house?
7.  Thou shalt not use other people's computer resources without authorization.
   
   What if it is an emergency, and the only way to stop a great harm is to use computer resources without authorization?
8. Thou shalt not appropriate other people's intellectual output.
   
   Even here, it is possible that somebody has a brilliant idea that can produce great social benefit, but which will not be taken seriously if the true author is known. By appropriating their intellectual output, society as a whole will gain substantially.
9. Thou shalt think about the social consequences of the program you write.
   
   Thought, unaccompanied by action, is pointless. They must act upon those thoughts. Further, it is not just in writing of software that thought of social consequences and action should follow: although both are necessary in the writing of software.
10. Thou shalt use a computer in ways that show consideration and respect.

There may be situations in the world where more good can be done by not showing respect for all, and the possibility of doing such good should not be dismissed out of hand.

Permission to duplicate or distribute the 'ten commandments' is granted by the The Computer Ethics Institute (CEI) with the provision that the document remains intact or if used in sections, that the original document source be referenced.

 

 

References

Beauchamp, T.L. & Childress, J.F. (1977). Pinciples of biomedical ehitcs. New York: Oxford University press.

Beauchamp, T.L. & Childress, J.F. (1994). Principles of biomedical ethics ( 4^th ed). New York: Oxford University Press.

Benjamen, M. & Curtis, J. (1992). Ethics in nursing ( 3^rd Ed). New York: Oxfor University press.

Christenson, C. & Bohmer, R. & Kenagy, J. (September/October 2000). Will disruptive innovations cure healthcare? Harvard Business Review. 102-117. 

Couser, K.D. & Gert, B. (1990). A critique of principlism. Journal of Medicine and Philosophy 15, 219-36, 222-23.

Davidson, P. (Ed.) (2000). Healthcare information systems. New York: Auerbach Pub.

Ermann, M.D., Williams, M. & Shauf, M.S. (1997). Computers, ethics, and society. 2^nd Ed. New York: Oxford University Press.

Gert, B. (1988). Morality: A new justification of the moral rules. New York: Oxford University Press.

Jonson, A.R. (1991). Causistry as methodology in clinical ethics. Theoretical Medicine 12, 295-307 

Markula Center for applied ethics. ( 1998) A framework for ethical decision-making. http://www.scu.edu/SCU/Centers/Ethics/practicing/decision/whatisethics.shtml

McDonald, Michael: A framework for ethical decision Mmaking: version 4. Center for Applied Ethics. http://www.ethics.ubc.ca/mcdonald/decisions.html 

Health Data Management ((1999). The 2000 guide to health data security. New York: Faulkner  gray, Inc.  

Howard, R. (1995). Apollo 13. Universal City: MCA Universal Studio.

Husted, G.L. & Husted, J.H. (1995). Ethical decision-making in nursing, 2^nd Ed. New York: Mosby, Inc.  

Lindberg, Donald A.B.; Humphreys, Betsy L. (June 18, 1997). Medical informatics. JAMA 277(23), 1870-1872.

Martin P.A. (1999). "Bioethics and the Whole: Pluralism, Consensus, and the transmutation of bioethical Methods into Gold" Journal of Law, Medicine & Ethics, 27, no. 4 (1999): 316-27.

McCormick, T.R. (1998). The place of principles in bioethics.http://eduserv.hscer.washington.edu/bioethics/tools/princpl.html#ques University of Washington

Pellegrino, E.D. (1993). The metamorphosis of medical ethics: A thirty-year retrospective. JAMA 269, 1158-62.

Spielberg, A.R. (Oct 211998) On call and online: sociohistorical, legal, and ethical implications of e-mail for the patient-physician relationship. JAMA 280(15), 1353-1359.

Spinellu, R. (1997). Case studies in information and computer ethics. Upper Saddle River, NJ: Prentice-Hall, Inc.

Center for Applied Ethics( 2000). Bioethical and Haealth Care Ethics resources on the WWW. http://www.ethics.ubc.ca/resources/biomed/

Theoretical Approaches To Health Care Ethics

Theoretical approaches to health care ethics have evolved in response to societal changes. In a thirty year retrospective article for the Journal of the American Medical Association, Edmund Pellegrino (1993) traced the evolution of health care ethics from the “Hippocratic ethic” through “principlism” and into the current “antiprinciplism” movement.

Hippocratic Tradition

• emerged from relatively homogenous societies where beliefs were similar and the majority of societal members shared common values.
• emphasis was on duty, virtue, and gentlemanly conduct.

Principlism

• As societies became more heterogeneous, members began experiencing a diversity of incompatible beliefs and values.
• Principlism emerged as a foundation for ethical decision-making.
• Principles were expansive enough to be shared by all rational individuals, regardless of their background and individual beliefs.
• This approach continued into the 20th century and was popularized by two bioethicists, Tom Beauchamp and James Childress in the last quarter of the century. 

Beauchamp and Childress (1977, 1994)

• popularized the principlist approach over the last twenty-five years
• define principles as general guides that leave considerable room for judgment in specific cases and provide substantive guidance for the development of more detailed rules and policies (1994, p.38)
• proposed four principles including respect for autonomy, nonmaleficence, beneficence, and justice.
   
  • Nonmaleficence asserts an obligation not to inflict harm intentionally and forms the framework for the standard of due care to be met by any professional.  (Beauchamp and Childress, 1994, p. 189)
    • Obligations of nonmaleficence are obligations of not inflicting harm and not imposing risks of harm.
    • Negligence, a departure from the standard of due care toward others, includes intentionally posing risks that are unreasonable as well as unintentionally, but carelessly, imposing risks.
  • Autonomy refers to the individual’s freedom from controlling interferences by others and from personal limitations that prevent meaningful choices, such as adequate understanding. Two conditions are essential for autonomy:
    • liberty, the independence from controlling influences; and
    • the individual’s capacity for intentional action (p. 121).
  • Beneficence refers to actions performed that contribute to the welfare of others. There are two principles of beneficence:
    • Positive beneficence requires the provision of benefits
    • Utility requires that benefits and drawbacks be balanced (p. 259)
  • Justice refers to the fair, equitable, and appropriate treatment in light of what is due or owed to person.  Distributive justice refers to fair, equitable, and appropriate distribution in society determined by justified norms that structure the terms of social cooperation (p. 327).  

Beauchamp and Childress also suggest three types of rules for guiding actions (rules are more restrictive in scope and more specific in content).

• Substantive rules are rules of truth telling, confidentiality, privacy, fidelity, and rules pertaining to the allocation and rationing of health care, omitting treatment, physician-assisted suicide, and informed consent.
• Authority rules are those rules regarding who may and should perform actions.
• Procedural rules establish procedures to be followed.

 

Anti-Principlism

The anti-principlism movement has emerged with the expansive technological changes and the tremendous rise in ethical issues accompanying these changes. Opponents of principlism include those who claim that its principles do not represent a theoretical approach and those who claim that its principles are too far removed from the concrete particularities of everyday human existence.
 
Causist Approach 

This case-based approach to ethical decision-making grew out of the concern for more concrete methods of examining ethical issues.  One causist proponent, Albert Jonson (1991), prefers particular and concrete paradigms and analogies over the universal and abstract theories of principlism.
 
The Husted Bioethical Decision-Making Model

• Husted and Husted (1995) are leading proponents of this practice-based bioethical approach to ethical decision-making called Symphonology.
• Husted and Husted do not reject principles but choose to frame the use of  values as standards to make them useful in a discussion of bioethics (1995, p. 55).
   
  • Principles mean “basic or necessary trut"hs. 
    • They have a sense of permanency.
    • They do not change with the changing situation.
  • Standards are the product of agreements about the existence or acceptance of a value. 
    • They are impermanent.
  • The Husted Bioethical decision-making Model centers on the health care professional’s implicit agreement with patient/client (Husted and Husted, 1995,p. 19), and is based on six contemporary bioethical standards: 
    • autonomy,
    • freedom,
    • veracity,
    • privacy,
    • beneficence,
    • fidelity.

Virtue Ethics

This approach emphasizes the virtuous character of individuals who make the choices. A virtue is any characteristic or disposition we desire in others or ourselves. It comes from the Greek word aretai  meaning excellence and refers to what we expect of ourselves and others.

• Virtue ethicists emphasize the ideal situation and attempt to identify and define ideals. \
• Virtue ethics dates back to Plato and Socrates.
  • Socrates believed that "Virtue is knowledge.
    • Thus, the cause of any moral weakness was not a matter of character flaws but of ignorance.
    • A person acts immorally because they do not know what is really good for them.
    • A person can be overpowered by immediate pleasures and forget to consider the long term consequences.
  • Plato emphasized that to lead a moral life and not succumb to immediate pleasures and gratification, one must have a moral vision. He identified  four cardinal virtues:
    • wisdom -  man’s rational approach to problem solving whereby the individual uses reasoning capacities to address real-life dilemmas.
    • courage - the spiritual virtue of man or the capacity to do what is right, even when you do not want to
    • self-control - refers to the ability not to do what you really want to
    • justice -overrides all
  • Aristotle’s Nicomachean principles (Aritstotle.350 BC) also contribute to virtue ethics.
    • Virtues are connected to will and motive since the intention is what determines if one is acting virtuously or not. 
    • Ethical considerations, according to his Eudaimonistic principles address the question, "What is it to be an excellent person?" For Aristotle this ultimately means acting in a temperate manner according to a rational mean between extreme possibilities. (The Doctrine of the Golden Mean).

Virtue ethics has seen a resurgence in the last thirty years. Goodman( 1998) credits Edmund Pellegrino and Thomasma with the resurgence of virtue ethics in the field of bioethics..  Pellegrino and Thomasma ( 1993) maintain that virtue  theory should be related to other theories within comprehensive philosophy of the health professions. They argue that moral events are composed of four elements—the agent,  the act, the circumstances, and the consequences—and that a  variety of theories must be interrelated to account for different facets of moral judment.
 
Care Ethics

Benjamin and Curtis base their framework on "care ethics" (Goodman, 1998, p. 5) and propose that "critical reflection and inquiry in ethics involves the complex interplay of a variety of human faculties, ranging from empathy and moral imagination on the one hand to analytic precision and careful reasoning on the other" ( Benjamen, M. and Curtis, J. 1992).

• Care ethicists are less guided by rules and focus on the needs of others and one’s responsibility to meet those needs.  
• The central focus is responsiveness to the needs of others that dictates providing care, preventing harm and maintaining relationships.
• As opposed to the above theories that focused on the individual’s rights, an ethic of care emphasizes a personal part of an interdependent relationship that affects how decisions are made.
• In this theory the specific situation and context in which the person is embedded becomes a part of the decision-making process.

 

Consensus-Based Approach

Finally,  Martin, (1999) proposes a consensus-based approach to bioethics.  Martin claims that American bioethics harbors a variety of ethical methods that emphasize different ethical factors, including principles, circumstances, character, interpersonal needs, and personal meaning. Each method reflects an important aspect of ethical experience, adds to the others, and enriches the ethical imagination. Hence, the challenge and the opportunity. Working with these methods as a group, the knowing bioethicist can transmute them into something new with value through the process of building ethical consensus. Diverse ethical insights can be integrated to support a particular bioethical decision, and that decision can be understood as a new, ethical whole.

Ethical Model for Ethical Decision Making

The Ethical Model for Ethical Decision Making is the property of Educational Advancement Associates (EAA). The permission for its use in this course has been granted in writing by Mr. Craig R. Goshow, Vice President, EAA.