Ethical Issues and Genetic Science

The advances in scientific expertise bring with them moral dilemmas. Genetic research offers great promise; we may soon be able to cure many of the genetically determined diseases and predispositions to disease. We may even be able to improve upon Mother Nature. The question is to whether humankind has the wisdom to utilize this knowledge for good without violating moral rules. Only time will tell. Genetic screening will allow  parents to know whether their offspring will be afflicted with disease, but in some cases this does nothing more than begin the misery sooner. Prenatal genetic testing will give parents the choice to terminate pregnancies that will lead to defective infants. Genetic testing may also justify discrimination in the minds of many. Eugenics as a state of policy is unlikely and will make such proposals. The human genome project will rank among humankind’s greatest achievements once it is completed, and by itself presents no real moral difficulty; but the applications of the knowledge may be more than human wisdom can handle. Recombinant DNA maybe the most dangerous as it puts us in the position of creators of whole species that may or may not coexist with humanity and the rest of natural world. In spite of dangers, we will proceed, as we should. We may not turn away from the pursuit of knowledge even if some would misuse it.

Transcultural Health

It is important for health care providers to be sensitive to these transcultural differences among our patient population as they affect how willing the patient is to comply with our regimes or even whether the patient is willing to risk entry into our strange system.

Example of this is in United States which is in a period of dynamic social change in which hundreds of thousands immigrants from China, India, Cambodia, Mexico, Haiti, South America, the Middle East, Philippines, and Eastern Europe are flocking on it. Along with their hopes, aspirations, personal problems, talents and dreams, these new immigrants bring with them their views of health, illness, and appropriate practices. Although a review of traditional practices within the diverse homelands of these immigrants reveals the existence of meaningful health care traditions different from those practice in the west, their is a reluctance of many health care providers to see the benefits or to be willing to accept these differences.

Health care practice in the West is based on scientific reasoning and high technology. Western health care is a system of marvels: organs can be replaced, the blind can be made to see, and the dead can be revived. On the surface it would seem that modern medicine as taught and practice in the West should be embraced by all. What can one truly take from a health care traditions that is not built upon an understanding of germ theory.

Some patients do not seem able to follow prescriptions given, will not show up for appointments, do not comply with treatment regimes, and are not even willing to access the system until they are in severe distress and leave quickly as possible. Under current practice, something is being missed in regard to these patients and the system is failing them. Is it because the patients and practitioners have different views regarding health , illness, and appropriate practice? Can it be that the patients often believe that the care offered would make them sicker or is incompatible with their illness? In some sense what the patient believes is not as important as whether the provider is sensitive to the facts surrounding the belief system of the patient and is willing to respect the differences. It is important to come to understand how patients understand illness and their relationship to it and also what motivates them to seek  medical assistance and then to follow the advice given. There is an ethical and professional imperative to build the bridges of understanding that allows for successful practice among those with different view of health, illness, and appropriate practice.

Genetics as Social Policy

Ethical issues arise when we consider the possibility of turning genetic testing into social policy. Some suggest that all parents be tested for genetic diseases in order to avoid the social and personal costs of genetic impairment. Others worry that this will lead to a coercive policy of abortion or of preventing parents from having children. Such policies raise still further issues when they are directed to certain ends, as they are with eugenics. Eugenics is the practice of manipulating the genes of offspring through either breeding or genetics alteration.  Should we attempt to eliminate some or all genetic abnormalities? Should we attempt to improve the race of human being by increasing intelligence through genetic selection?

Scientist are not only involved with genetic testing, they are also engage in an enterprise called “the human genome project”  The task is to ‘map’ the 100,000 genes that make up the 46 chromosomes, which altogether comprise the ‘human genome’. The genome is the blueprint contained in each cell that guides the development of of human being. The ethical worries regarding this issue is more vague; they have as much as to do with the idea of human possessing such “God-like” knowledge as they have to do with application of knowledge. From certain theological points of view, the mere possession of such profound knowledge is immoral; only God should have such knowledge. The idea is that the attempt to gain such knowledge is hubris or excessive pride. It is suggested that we leave such knowledge to God and concern ourselves with more mundane task.

Ethical Issues of AIDS

I remember that weekend when no patient in the intensive care unit was over the age of forty. i remember the intern who tearfully refused to come to the emergency room to see the fourth AIDS patient I had admitted to her in as many hours. She never did meet him; he died before she calmed down.

Abigail Zuger, M.D.,1986

Hundreds of thousands of lost lives later, the initial impact is over. The thunderbolt of AIDS are starting to become a fact of life. Some sense of continuity with the rest of history has become possible.  AIDS continues to be a source of uniquely complex medical, legal, and social dilemmas; nonetheless, it has evolved into an entity provoking fewer immediate panicked reactions and more measured, mature analysis.

Abigail Zuger, M.D.,1993

 Acquired  Immune Deficiency Syndrome (AIDS) continues to grow as a worldwide epidemic. The disease, which at one time was centered within certain high-risk groups, has now spread into all segments of the population. The study of high-risk groups is no longer the best way to identify those at risk for the disease; rather, risk should be measured through the observance of certain high-risk behaviors.

Due to the frightening consequences of the disease and its relative newness, the public has reacted very negatively toward those infected. Victims of the disease have been stigmatized, exposed to humiliation,  and have experienced loss of work, insurance, and housing. The issue of confidentiality and the attempts to sustain a level of privacy beyond that provided for other diseases often create problems for the patient and health care provider. AIDS is the only disease about which there is any question as to whether health care providers should be told the diagnosis of their patients.

Ethical issues involved with this disease include confidentiality, the duty to treat infected individuals, the need for universal screening, the duty of infected health care providers to warn patients , and the need for equitable distribution of medical care and research dollars. It is clear that the resources that will be needed to care for these patients threatens to overwhelm an already burdened health care delivery system.

None of these issues has yet been satisfactorily addressed. How we finally addressed  and resolve this problems will speak either well or ill of the ethical foundations of the American health care system. Because of the scope of the ethical problems associated with the AIDS epidemic, our actions in response to it will leave either a proud or a shameful heritage for future health care providers.

Abortion

There has been little information with regard to the health provider’s role in abortion. The reason for this is that the abortion issue is not essentially a health issue but rather a social issue that take place in the health care arena. Abortion, in most instances where it is performed, is legal. The American Association in it’s Code of Medical Ethics, Current Opinions document, 2.01 states

The Principles of Medical Ethics of the AMA do not prohibit a physician from performing an abortion in accordance with good medical practice and under circumstances that do not violate the law.

One’s attitude toward abortion is often very intense, close, and personal. As a matter of professional autonomy, it would seem that health care providers with deeply held beliefs with regard to this matter would not be required to participate in the process. However, this may require that the provider ascertain the philosophical view of the institution where he desires employment prior to accepting duty there. Its make very little sense to look at only the salary and fringe benefits of a hospital and then find yourself working at an institution where the daily practice of abortion creates for you severe moral distress.

Health care providers, regardless of their personal feelings concerning abortion, cannot ignore the social realities of our time., such as the liberation of women and the problems of teenage mothers. There is very little indication that the abortion controversy will end anytime soon. As a matter of role duty, we must come to understand that people of intellect and honor have come to very different decisions regarding the issue. As health care providers, we do not have the luxury of treating patients with whom we have formed a patient/provider relationship with anything but the highest level of professional concern , regardless how we may feel about their decisions on this issue.

Abortion is an extremely emotional issue in that it makes us consider some very important and deep moral concepts, such as person-hood and the value of human life. While it is important to understand the facts of fetal development, there is no getting around the problem of philosophical disagreement over fundamentals. Noe can we ignore important social realities such as the liberation of women and the problem of teenage mothers. Abortion also requires that we review our moral intuitions. We discussed various analogies in order to determine whether our intuitions can yield a consistent moral position on abortion.

whatever your view of abortion, it should be clear that issue is a difficult one that reaches to the depths of our most profound thoughts on what is important in life. Nothing indicates that the controversy will end anytime soon, so how is a sensitive person to regard her opponents on the issue? If one imagines that a fetus is a baby, how much effort on it’s behalf is rational? An adult who rushes into the street to save a toddler who has entered the pathway of an onrushing car would be considered hero. What, then, is so extraordinary about blocking a doorway or lying down in front of an abortion clinic, if what you see yourself doing is saving babies? If, on other hand , your view of a fetus is that of a piece of tissue–even one with remarkable potential, but still only a piece of tissue–jumping in front of cars or blocking doorways is a very strange behavior indeed.

Perhaps what is missing in the debate is a level of tolerance and civility that considers the opposing view to be wrong but perhaps rational. The pro-choice advocates began to call the pro-life advocates”terrorist” while the pro-life movement continued to cast the pro choice side as “baby killers”. It is not likely that “baby killers” and “terrorist” are the kinds of people who will be able to sit down and reason together. Confrontations have become increasingly violent and costly as one town after another becomes a battleground.

Withholding and Withdrawing Life Support

I cannot but have reverence for all that is called life. I cannot but avoid compassion for all that is called life. This is the beginning and foundation of morality…It is good to maintain and cherish life; it is evil to destroy and check life

Albert Schweitzer

Possibly …no contemporary superstition is so stupid and pernicious as the indiscriminate adoration of the word life, used without any definite meaning but effectively hiding the fact that life includes the most loathsome forms of disease and degradation. sanity and wisdom consist not in the pursuit of life but in the pursuit of the good life…

Morris Cohen

Of all problems that can be considered life and death ethics, none has caused the same level of moral anguish as that of withholding and withdrawing life-support systems. The attitudes and values expressed in the quote by Dr. Schweitzer are a positive affirmation of life, and it is often sentiments such as these that bring individuals to the practice of health care.

Today, however, the practitioner is faced with the frustrating problem of available technology that allows for life extension but cannot restore the patient to a life free of pain and misery or even, in some cases, to an awareness of the environment. This frustration often leads to a new attitude toward life, one that finds expression in statements like the one above by Morris Cohen.

The practitioner’s duty to respect life and preserve it where possible may at times come into direct conflict with the duty to alleviate pain and suffering. The Hippocratic Oath binds physician and other health care providers to take upon themselves the duty to adopt practices that shall benefit the patient and protect them from hurt or wrong. what is to be done when the care we offer appears to have no value to the patient? What is to be done when the quality  of life restored has negative value, when itself appears to be an added injury.

Medical science can now save biological life so effectively that we have been forced away from using a cardiopulmonary definition of death to the certification of death by brain function. We have also as a product of our technology and therapeutics moved into  a time of being able to fend off brain death, only to expose the patient to continued misery and suffering. Health care providers have reached a quandary in which the duty to respect and preserve life comes into direct conflict with the duty to prevent and relieve pain.

We have examined several classes of patients for whom decisions of withdrawing and withholding care have been reasoned through. These decisions have gained some cultural, legal, and ethical acceptance. Reasoning for the profoundly handicapped infant, the PVS  ( Persistent Vegetative States) patient, those who chose informed non-consent, and the mentally retarded each require a different basis. In some instances, the framework of what is to be done has been postponed and the issue have become, instead, who is to decide.

Some instances of non treatment seem to have gained acceptance and are rather noncontroversial. The ninety eight year old with severe dementia and not a relative in the world who contracts pneumonia might be allowed to die quietly. The real question in regard to health provider duty do not lie in the  extremes, such as infant born with no brain inside its skull, but in the middle ground where there will be a potential for person-hood and meaningful life. In extreme cases where no potential exist, or where the best interest of the individual seem best served by withholding or withdrawing treatment, a form of passive euthanasia has been allowed.

Euthanasia, which literally means a gentle or easy death, has been divided into two major groupings, passive and active. The process of doing nothing to prolong life or fend off death is called Passive euthanasia. Active euthanasia, as defined is the active participation of ending life, and is currently forbidden by most codes of ethical conduct.

Justice and the Allocation of Scarce Resources

In United States, a very high standard of health care, inflationary rises in cost due to increased demands for services and the use of expensive life-extending technology threaten to overwhelm the system. In 1997, we were spending about 14 cents out of every dollar of the gross national product on health care, and the trend indicates increases in foreseeable future.  These cost have escalated, even in the face of massive governmental intervention  by way of prospective payment. The end result of our seeming inability to contain costs has been to place an ever-increasing number of our citizens outside our health care system, without money to purchase care, insurance, or health benefits to cover costs. A recent study highlights the problems our system is facing. Uninsured infants, while having more severe medical problems, received fewer medical services than those provided to babies who were privately insured or cared for under Medicaid. This decline in in quality of health care afforded to uninsured  Americans seems pervasive across the whole system. A feeling of crisis permeates the nation in regard to health care as we struggle to decide to what and who is to pay.

National discussions in regard to the micro and macro allocation of health care resources have entered around the principle of justice. Proponents of egalitarian, libertarian, and utilitarian theories of justice have put forward a variety of rationing schemes, and is outline in three approaches;

  • Private Market Approach – this approach seeks to build upon our existing system by encouraging everyone to buy health insurance with the assistance of tax credits, tax deductions, and redeemable vouchers. Some citizen would receive health insurance through purchasing it, others through their employers, and low income individuals would receive tax credit/vouchers that would make health insurance affordable and available.
  • Government-based Approach – this approach calls for a national health insurance provided by the government. Everyone would receive access to a guaranteed basic hospital and physician coverage. Employers would no longer be required to provide coverage for employees but would contribute financially to the universal health plan. Private health insurance companies would play no part in the plan, but might provide additional coverage through supplemental insurance.
  • Employer-based Approach – Sometimes called the “pay or play” approach, this plan calls for employers to either ‘play’ by providing health insurance for employers, or ‘pay’ a tax that provides coverage through a public plan. Either way, everyone receives health insurance, either from an employer or the government. Medicare would still be in place for older citizens and those handicapped.

The options available range over the full spectrum of political philosophy. There are those who argue for a pure capitalist approach, whereby costs are contained by the invisible hands of a free market. Others see the need for a utilitarian system, with government distributing care so as to provide the best for the most by restricting access of certain therapies to selected patient groups. Still others admire egalitarian proposals, by which everyone has equal access to all the care available consistent with resources.

Several mixed models for the macro allocation of health resources have been put forward. They call for a two-tiered system that provides a decent minimum level of basic and catastrophic care available to those who can afford to purchase it. The concept of a two-tiered system, providing a decent minimum care, forms the basis of the system in Oregon.

On the micro allocation level, groups have struggled with the allocation of such diverse resources as mechanical hearts, fresh organs, and intensive-care beds. Several system have been put forward, looking at a variety of triage schemes, with criteria based on such concepts as social and medical utility, ability to pay, first come first serve, and the lottery. Whatever system is finally selected, to be ethically sound of it must not fall more heavily upon the socially disadvantaged or those incapacitated by illness. The weighing of one class of treatments or technologies against another must take place in a closed system. When beneficial care is denied to one group it must be because there is a better use of those resources elsewhere in the system. The criteria for making decisions of what constitutes “better use” should be in accordance with the principle of material justice, and the fair opportunity rule.

Autonomy vs. Paternalism: A Contest Between Virtues

Providing health care is a shared practice, in which the expert and the consumer both work to be sure that what is delivered is satisfactory to each. As the expert, the practitioner knows what is needed in a pure medical sense, but does not know how the value preferences of the patient will affect what part of the care will be accepted.

Since there is a general agreement that, thorough the exercise of personal autonomy, the patient has the right to decide the nature of care, it is vital that the practitioner make sure that the decision is based on appropriate information. Informed consent is required for all invasive or risky procedures that have potential for harm. The physician must disclose pertinent details about the  nature and purpose of the procedure, its risks and benefits, and any reasonable alternatives to the recommended treatment.

There have been several standards for this disclosure of information, but today most practitioners recognized the reasonable patient standard, which requires that the information be explained in such a manner that a hypothetical reasonable person could understand and make decisions. Because all of us are unique in what we value, it may be time to develop a more subjective standard than that of a “reasonable” person.

While there is a general agreement that the autonomous adult has the right to decide these issues, there are times when the autonomy of the patient is limited by the pain, trauma, age, and mental competency. Competency is usually established in the ability to answer two questions in the affirmative: First, does the patient understand the nature of the condition and the various options available; and, second, is the decision making process rational? The second question is somewhat modified when the decision is based on a protected religious faith, rather than reason.

Paternalism in its best sense is based on the principle of beneficence and a desire to do well for the patient. In modern health care, this desire to do good is not a justification for overcoming a competent patient’s personal autonomy.

Professional Gatekeeping as a Function of Role Fidelity

Regardless of the level of practice, the ability and opportunity to participate in the provision of health care is an awesome and wonderfully engaging enterprise. The health professions are meaningful professional careers. To enter the practice of health care is to enter in to a social contract with other practitioners, your patients, and the community in general. This social contract calls not only for a particular set of clinical skills but also appropriate ethical, legal, and social behaviors.

Like any other professional endeavor, the common area of practice belongs to each and everyone of us.  It is unthinkable and unwise to believe that some other group of specialist such as physicians will maintain the health care arena. The obligations of ethical conduct, community service, and the refinement of knowledge are not the obligations of the few but the many. Health care is a team effort, and the team is responsible for the outcomes.s. It is a common field where we labor, and, like any other field, it requires that all those involved in the harvest maintain the space so that we can come again, and when we finally finished, leave it to others who will replace us in the labor.

We are in the time of great change for health care. Rapid technological and social change has pushed the frontiers of health into uncharted territory. Many of the legal and ethical issues faced by health care providers are new. To make matters more complicated, this is also a time of legislative reform to the health care system where at times it seems the only thing that is truly stable is change.

This is a litigious age. Out patient populations have come to expect miracles that cannot be always delivered . Practitioners at times find themselves seemingly between two forces: unhappy patients, aggrieved relatives, and their lawyers versus the risk management department, other health care providers, clinical institution, and insurance companies. Practitioners are expected to conduct themselves in a manner that protects the patients and the institution they serve.

This dealt with several functions that can be listed under the headings of ‘small ethics’. While they do not deal with great life and death issues such as euthanasia, justice, or withholding/withdrawing life support, they are the daily stuff of modern practice. They come as a function of our role duty and are the price one pays for being a professional. as practitioners of health professions we have an obligation to our patients, our colleagues, and our profession to perform these necessary-albeit unpleasant-gate keeping tasks.

Confidentiality and the Management of Health Care Information

Personal privacy appears to be under seige  in all aspects of our lives. The use of computers has greatly increased this concerns, as it i common knowledge that all of us have dossiers in several major data banks. These governmental and commercial data sources provide information to others in regard to credit ratings, marital status, and even hobbies and interests. It seems at times that one need only provide a small donation to a favorite charity (perhaps to save woodlands) before being inundated by an avalanche  of offers for the type of person who might want to save woodlands, or at least look woodsy.

The general patient population still places a great deal of faith in the manner in which health care providers maintain the principle of confidentiality. Confidentiality seems to serve two basic purposes. First, the principle acknowledges a respect for the individuals right to privacy as guaranteed by our legal system and enshrined in our cultural values. Second, and perhaps more important to the health of the patient, the promise of confidentiality provides a bond between the practitioner and patient that allows for a full and honest disclosure of information. In those rare cases where disclosure  is necessary to protect a community interest, confidentiality must be balanced by a duty to warn, especially with vulnerable third parties.

Although the establishment of hospital team medicine and bureaucratic information has eroded the principle of confidentiality, it is imperative that, to the fullest possible extent, health care providers take meticulous care to guarantee that patient’s medical and personal information be kept confidential. To the degree that health care providers must breach confidentiality to third parties, it would seem that the patient should be notified of the  nature and ramifications of these disclosures. If patients understands what will happen to the information, they then would be in better positions to decide which of their personal matters they would choose to relate and what they would prefer to keep private.

Policies must be designed to balance the right to legitimate personal privacy while not offsetting the institutional need to make necessary information quickly and easily available to those who have a legitimate claim to it. It would seem that, at a minimum, these privacy safeguards should ;

  1. ) Define circumstances under which medical information is disclosed to other parties.
  2. ) Provide procedures by which patients may gain access to their records.
  3. ) Allow access to records to other only on a “need to know” basis.
  4. ) Ensure anonymity in aggregating data for research or statistical purposes.
  5. ) Carefully balance societies long term goals and the legitimate need of organizations to have access to medical records with the patient’s short term desire for and right  to privacy.
  6. )  Inform the patient to what is meant by confidentiality in the context of current practice.

These safeguards would be in the spirit of informed consent and would offer some protection against misuse and abuse of patient information. In addition, if patients have access to their records, they can ensure that the information contained there is accurate, complete, and relevant to their care. Patient advocacy is a significant responsibility of all health care practitioners, and the restoration of some semblance of institutional responsibility in the area of confidentiality is necessary if our patients are to continue to believe in the process.