Health Care Ethics

                                                                                         

Health Care Ethics
Recent years Health Care ethics becomes one of the most important issues in medical practice. This situation is closely connected with development of gene engineering, cloning and ethical standards applied by other sciences. The paper is aimed to examine and discuss the role of genetic information disclosure and its legal and ethical implications which a practitioner faces in today’s society.
Health Care ethics can be defined as the rules of moral values that guide decision making by medical staff. They are a per¬son's fundamental orientation toward life, what a person sees as right and wrong. Ethical responsibilities of a practitioner are how its decisions and actions show con¬cern for what is considering fair and just. Medial ethics mean more than simply passing moral judgment about what should and should not be done in a particular situa¬tion. It is part of the conscious decisions a practitioner makes about the directions and consequences of his decisions. It is a link between morality, responsibility, and decision making.
The question of genetic information is important because the use of information about genetic variability in relation to health or social security raises fundamental questions of discrimination against those with genetic risks and of confidentiality of personal health information. “As genetic testing becomes increasingly sophisticated, more and more people will have access to (and have to make decisions on) genetic information that could have implications for their relatives’ health” (Forrest, 2004). There are three specific manifestations of the 'new' genetics:
(a) the regulation of the use of information derived from genetic testing, taking merely as an example the use by the insurance market;
(b) questions raised by information derived from an individual's genetic make-up, including in this context consent, especially where children are concerned;
(c) the particular application of that knowledge in the context of abortion based on fetal anomalies.
Understanding of polygenic conditionand predispositions to diseases is growing. Mapping the genome may increase the scientific and medical ability to predict, understand and eventually to prevent or to cure human diseases. This also gives rise to questions as to how this information should be used, and the necessary background laws and norms that will either be applied or will become more clearly perceived to direct and control, to regulate the use of this information, either by individuals or by societies generally.
Urging continued vigilance in respect of those who would make use of genetic knowledge for personal, political or economic interests and leverage, it is possible to speak about endlessly shifting balances of power that are the inevitable consequence of scientific knowledge and its application (Thomasma, 2004).
With the advances in the scope and reliability of genetic testing, information relating to an individual's genetic predisposition will be of considerable use to a potential insurer in that such information is indicative of the risk to the insurer that that individual represents. More than that, the influence that this knowledge, directly and indirectly, could exert over lifestyle and life choices is manifest and major.
A practitioner should be well aware of genetic information and possible risks of its disclosure. Its important because genetic knowledge is a form of information technology, and as such it poses three types of disquiet: (a) in facilitating intrusions on personal privacy; (b) in providing the means for institutions to exercise particular forms of control; and (c) in encouraging practices that threaten certain values. Allied with the biotechnological imperative information technologies can directly affect particular economic interests; they may be a source of risk, and for some, they are a moral threat.
The hazards biotechnology are invisible and there remains uncertainty about the health effects of low level, long term exposure. biotechnology evokes images of warfare and fantasies of monsters and mutations, demons and chimeras.23 The challenge that recent developments in genetic science presents is to obtain all the benefits of the knowledge while minimising or eliminating the risk.
For instance, discussing the possibility that a gene for schizophrenia may confer advantages not yet recognised on those in whom the overt disease does not manifest, scientists suggest that not only will it be a long time before the genetics of psychiatric conditions is understood, but, more importantly, eneticists themselves are likely to be the first to recognize the dangers of interfering with the natural flow of genes within a population before the social implications are understood. Thus, they appear to be suggesting an essentially biological or genetic subset of dangers that are divorced, or separate, from the social implications of what may transpire (Heifetz, 1996).
Of course, once having obtained information about an individual in respect of his or her genetic make-up, doctors and other health care workers have an established duty not to disclose this information learnt in the course of their practice. This extends to any information about a patient that the doctor has learnt directly or indirectly in the course of the professional relationship or capacity.
In this situation, “Nurses, like other health care professionals, have a fundamental and unavoidable moral responsibility to be able to identify and respond effectively to the moral problems they encounter (whether 'simple' or 'complex'), and, where able, to employ strategies to prevent them from occurring in the first place” (Johnstone, 1999, p. 161). The obligation arises out of the relationship, although it may be reinforced by the nature of the information.
The public interest in obtaining information in order to secure public health indicates that certain kinds of information, such as may be obtained by certain kinds of testing, give rise to an obligation of confidence on all concerned. This might extend the duty of confidence not only to the health care professionals primarily concerned, but also to laboratories and other paramedicals involved in the analytical process. Patients may have a concomitant duty to their doctors in certain circumstances.
The further question arises of whether a health care professional may be entitled to or become obliged to reveal genetic knowledge to relatives of a primary patient, where that discloses information whose absence would be harmful to those other individuals. And, they may have an obligation to do this despite the objections of the primary patient about or from whom they have gathered the initial data. Clearly, once a duty to pass on medical information -or, as here, genetic information - becomes established, the health care becomes implicated through having that knowledge.
A number of circumstances may arise in which information may have to be disclosed to a third party. “Some patients may decide not to tell their close or wider family of their genetic status, or choose to only tell certain family members. If information is withheld from at-risk relatives, medical professionals may face the dilemma of whether or not to break confidentiality in the interests of preventing potential harm” (Forrest, n.d.).
The first is where, in the course of legal proceedings, a breach of confidence is required by a competent court or where disclosure is otherwise authorised by statute - as under the Abortion Act 1967 and its regulations, or the Public Health (Infectious Diseases) Act 1984. Secondly, information may, in its nature, come to lose the necessary elements of confidentiality, such that further disclosure would no longer represent a harm to the person to whom it related. Thirdly, there may be circumstances in which the disclosure is expressly or impliedly authorised by the person to whom it relates - in a way, this is an example of the information having lost its necessary clement of confidence.
Finally, there may be circumstances in which, through the behaviour or some other act or omission of the relevant party, it is in the public interest that otherwise confidential information be disclosed. whom it relates - in a way, this is an example of the information having lost its necessary clement of confidence. Finally, there may be circumstances in which, through the behaviour or some other act or omission of the relevant party, it is in the public interest that otherwise confidential information be disclosed
There are strong advocates of each of these, and of variations on the several themes. In ordinary day-to-day medical practice most practitioners when making decisions tend to combine these different approaches, although frequently without being aware of the mental processes they are using. It is helpful to be aware of whether one is thinking in terms of 'acts' or 'ends', especially when analysing a dilemma.
By its nature, the practice of medicine is driven by a range of human values (the relief of suffering prominent among them). This recognition should replace an exclusive focus on ethics because the range of human values is more than ethics alone: medicine presupposes moral, aesthetic, socio-political, intellectual and epistemic values which together construct what medicine is, what it does and what it aims at.
Ethics refers to the first and most obvious category of values, but in time it might come to be seen as merely a special case of a more general concern. Individuals' illnesses are a fusion of biological processes and biographical experiences; this is true to some extent of all illnesses, but is especially true of chronic illnesses. The treatment of chronic illnesses in particular requires a fusion of biological and biographical understanding.
Genetic privacy is essential for every practitioner. The question of genetic information about one person, which may identify or suggest a genetic disorder or trait in another, poses a particular dilemma in the physician-patient relationship. It is supposed that genetic medicine . is greatly expanding views of privacy and bodily integrity into a wider concept of corporate ownership of familial and ethnic autonomy. It now seems that the totality of a person's physical existence exceeds the limits of a single person's body. Some already say that genetic information is the common property of the family as 'corporate personality'
In this situation, particular pitfalls are evident: mere biological links may be insufficient to promote the intrusion into the psychosocial components of privacy; it is difficult to draw the line between information relevant to genetic counselling and that which is not; as more diseases appear to contain hereditary components, possible compromises of confidentiality appear unlimited; removing all control of data from people who are screened may be counterproductive and dissuade them from entering family screening programmes.
As genetic tests become simpler to administer and their use expands, a growing number of individuals may be 'labelled' on the basis of predictive genetic information. The use of predictive genetic diagnoses creates a new category of individuals who are not ill, but have reason to suspect they may develop a specific disease sometime in the future. The loss of autonomy and privacy, which fears of genetic testing have foreshadowed, can be the genesis of a life-long psychological prison - the prison of one's perceived genetic "programming" (Gillon, 1994).
Crude genetic screening has been used for many years by taking into account family history, such that the current health state of an individual is thought to be a useful indicator of that individual's life expectancy and the extent to which he or she is likely to consume health and other resources in the future.
Whereas, in the past, one might have said that an individual's state of health was a combination or amalgam of heredity, environment, behaviour and luck, one of the radical changes that genetic testing introduces is the question of responsibility for health. “The implications of most genetic tests used in practice are, however, unlikely to meet the standard of serious harm required for a deviation from usual practice on either model, and in such situations, the models require us to pursue opposing courses of action” (Parker, Lucassen, 2004). The knowledge that a woman is at risk of giving birth to a genetically damaged child may ensure that she is unable to obtain insurance cover for the child and hence lead to tacit pressure to have an abortion.
Attempts to legislate in the US have taken the form of Bill HR 5612, which first entered the US Congress in September 1990 as the Human Genome Privacy Act, to be succeeded later by a modified Bill in April 1991. More recently, Bill HR 2045, virtually identical to Bill HR 5612, has been presented to the House of Representatives.
Unlike the US law, English law knows no general concept of privacy. In the sense that it gives limited access and ability to be able to control the divulgence of facts or information about oneself, English law may be said at best to afford some tangential recognition of privacy interests, but it admits as yet of nothing so strong as a right of privacy. It is evident, however, that the use of genetic information by insurance companies for the purpose of deciding whether, or at what level, to grant insurance should be debated and resolved before widespread piecemeal applications of genetic testing take place to forestall the creation underclass of medically uninsurable people (Heifetz, 1996).
For practitioner genetic information is no different from other medical information that may be held in an individual's medical record, and observed that existing records probably contain references to family history and illnesses. Such information may already be used in making differential assessments of risk, and to allow withholding of genetic information distorts such equitable treatment and is akin to offering motor insurance while letting drivers withhold information on their accident record. Importantly, the analysis appears to ignore the possibility that a number of key issues confront the family, the geneticist and society in connection with the genetic counselling process which may ensue following the initiation of what we may call the 'genetic viewing' process (MacDonald, Williams-Jones, 2002).
Before genetic information disclosure, a practitioner should answer the following questions: (a) what is genetic information? Does it apply to family history information and to blood tests? (b) How are insurers to be protected against adverse selection? (c) Should an underwriter be permitted to request genetic screening when it has not previously been performed?

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