Legal and ethical issues in Health CareIntroductionA young woman, Martha, is pregnant. She attends the antenatal clinic, where a nurse takes her health history and runs a series of tests, such as blood, urine and blood pressure. The nurse offers her an HIV test.
Martha declines, as there seems to be no requirement for one. She is also aware of the complexities in obtaining a mortgage if she has this test.The blood sample taken by the nurse is sent to a laboratory for analysis for hemoglobin content, and syphilis. At the similar time a small amount of blood from this sample is placed in an unnamed test tube which is then sent to a central laboratory to be tested for HIV.
The nurse is totally unaware that this has occurred so cannot inform Martha. Unknown to her the secret blood sample has been tested and found to be HIV antibody positive and this is recorded at the national surveillance center.Martha’s pregnancy continues normally and she delivers a healthy baby. The baby has a heel prick blood test (Guthrie Test), which is regularly performed on newborns to detect phenylketonuria (PKU) and hypothyroidism.
In this case it comprises a test for HIV. The PKU and hypothyroidism tests are linked to the baby’s identity and are done with Martha’s knowledge, but the HIV test is secret and is done without her consent or knowledge.Antibodies to HIV are detected, although it cannot be known whether these are ‘maternal’ antibodies flowing in the baby’s bloodstream temporarily, ultimately to disappear, or whether the baby in fact has HIV infection. Anyhow, although this HIV antibody positive result contributes to more epidemiological evidence collecting about HIV, no benefit has accrued, or can accumulate, either to the baby or the mother from the test at this stage.
Martha was not informed regarding of the HIV tests and was not given the chance to either decline or give her consent. Consequently appropriate socially and health benefits cannot be offered to Martha, as she has no knowledge yet of her baby’s or her own HIV antibody status.The time passes by and Martha begins to feel ill. After much consideration and conversation, her physician offers her an HIV test.
The time waiting for the result is burdened with anxiety and the physician is apprehensive too. The test is positive, and so is a test on the baby’s blood.In the meantime, a national surveillance system is in operation, and doctors are encouraged to report AIDS cases to a central surveillance unit. This is a deliberate system which began in 1982, and Martha’s physician fills in the appropriate form and sends it to the surveillance center.
Martha is not aware of this process and the physician does not inform her. He does not think twice about it, after all, he reports numerous illnesses such as cytomegalovirus and Legionnaires’ disease on a voluntary base. That is, these are not notifiable diseases, so there is no statutory obligation on the physician to report.Her physician had mentioned on the form that she was not a drug user, had not acknowledged infected blood products, and that she had said she had not behaved in a ‘high risk manner’.
Approached through her physician, Martha gives consent for the interview. She is confused to learn that her physician, who had respected confidentiality thus far, had sent information about her to a central surveillance unit without informing her or asking her consent. She begins to speculate how many other people know of her illness and whether this information is going to gain her care or certainly be beneficial to any other people living with HIV or AIDS. She feels rather disappointment by her physician, but agrees to continue with the interview.
The interview takes numerous hours and she is asked very intimate questions concerning her sexual behavior and history. The interviewer tries to set up whether the contact was only sexual, or whether it was with somebody who had behaved in a ‘high risk manner’ (such as a drug user), whether the person was from a country where the heterosexual spread of HIV is common, whether her partner had been bisexual, or whether she had a sexual partner in relation to whose sexual history she was ignorant.As Martha’s trust in the physician had now broken down, he began to act defensively, and Martha determined to complain to the interviewer’s employers. She complained concerning what she regarded as a breach of confidentiality by the physician, as he had not asked for her permission to pass on the report, and also on the upsetting interview.
The Medical Defense Union supported the physician, but the interviewer found himself unproven by his professional body because he had not received formal ethical approval for the interview. He had actually gone ahead with the research on the instructions of his superior. The basis he offered for the absence of approval was that other field studies on disease outbreaks, such as legionnaires’ disease, does not usually require ethical approval and, anyhow, it was eventually the responsibility of his superior.However, it now seemed that the interviewer had breached his own professional code of conduct, for he was in fact responsible for all the pertinent actions carried out by him whether ordered by his superior or not.
He was wrong in thinking that his superior would have to carry the can alone. The director of the surveillance center then gave Martha an excuse for the distress caused her and went on to clarify how significant and useful the information gained from her would be for the epidemiology of AIDS.;Ethical discussionSubmission of the research study to an ethical committee at the Public Health Laboratory Service might not have completely obviated the causing of upset to Martha, but it may have minimized it. This would depend on how good that committee was.
An ethics committee, if it approved the interview research at all, might have stipulated that it be made sensitive enough to have ensured that the interviewer was better set for his delicate task.The absence of official ethical approval for the research study is a prima facie wrong. I believe here the question of whether epidemiological surveillance can correctly be regarded as research, and whether HIV and AIDS can be regarded as to have the same moral and ethical connotations as other diseases, notifiable or not. I will also touch on the ethical problems which are highlighted by an investigating nurse working in epidemiology, such as myself, and governed by a strict code of conduct, which has to work with doctors and others who could simply not see the moral aspects.
It might be argued that surveillance is not research, that this is usually undertaken without official ethical approval and that in any case epidemics need rapid responses which the approval process would hinder.First, I would question the postulation that the surveillance of disease generally does not require ethical approval. I think we must presume that surveillance of any disease, notifiable or not, needs such approval unless some intervening reason can be provided. If urgency does not consent a scrutiny of each and every study, then conceivably a standard approach could be approved in which policy decisions are made public.
For instance, the policies that consent will be gained, or will not be obtained in such and such circumstances for such and such reasons, or that people will at all times be informed of surveillance activities, or that confidentiality will be appreciated by such and such means.Subsequently, even if HIV/AIDS does come to be considered as ‘ordinary’ as any other disease under surveillance, it is still true that at present it remains immensely an ‘unknown’ and stigmatized disease surrounded by taboo (Wallace, M. 1992). People living with HIV/AIDS experience degrees of discrimination not experienced by the sick as the time of bubonic plague and leprosy.
People with HIV/AIDS have to be confined, since they can be significantly damaged by the unrestrained discrimination which is prevalent in all parts of the world. In these early years of this pandemic, health carers must be aware of these problems and tries hard to minimize the harm which can be caused by ignorance and insensitivity. Appropriately constituted ethical committees can go a long way in achieving this.There still appears to be little control over and standardization of ethical review committees in the UK.
Membership is frequently arbitrary and standards of review vary from one health authority to another. Where in one committee one might get a study decline in another, one might get approval with obligatory ‘chairman’s approval’. Hopefully the recent Department of Health guidelines on ethical review committees will develop the situation. Legal discussionConfidentiality has always been part of the ethical codes of the medical profession.
From the days of the Hipocatic Oath to the ethical code of the General Medical Council today doctors have been urged to maintain the confidentiality of their patient information. There are reasons why it can be regarded as of importance. It is necessary because unless it is assured then patients will not be keen to come forward for treatment.GMC guidelines; Confidentiality; Protecting and Providing InformationDisclosure of information necessary for treatment“Where patients have consented to treatment, express consent is not usually needed before relevant personal information is shared to enable treatment to be provided (paragraph 7)You should make sure that patients are aware that personal information about them will be shared within the health care team unless they object, and the reasons for this (paragraph 8)Anyone to whom personal information is disclosed in confidence must respect the confidence (paragraph 9)http://www.
ethox.org.uk/Ethics/econfidential.htm This is an argument forcibly used in the context of certain medical as regards the public interest the Court reiterated the decision of the English court in X v Y, which underlined the relevance of the protection of confidentiality to public health stating:“In the long run, preservation of confidentiality is the only way of securing public health; otherwise doctors will be discredited as a source of education, for future patients will not come forward if doctors are going to squeal on them.
Consequently, confidentiality is vital to secure public as well as private health, for unless those infected come forward they cannot be counseled and self-treatment does not provide the best care …” http://www.law.ed.ac.
uk/ahrb/personality/zacases.asp English law needs the general practitioner to retain the confidentiality of patient information. Though, there are only very limited situations in which a doctor is essential by statute to retain patient confidentiality. One such situation is in the framework of venereal disease (NHS Venereal Disease Regulations SI 1974 No.
29).Another is contained in the Human Fertilization and Embryology Act 1990 which makes it a criminal offence for illicit disclosure to be made of information concerning infertility treatment protected under this legislation (section 31). The statute contains numerous exceptions sanctioning disclosure. It is prominent that in both cases the statutory provision is conservation health care information which is considered as particularly sensitive in nature.
The patient with HIV/AIDS infected might feel inhibited in seeking treatment without the promise that confession will not be made; likewise the couple who are infertile may want to ensure that the confidentiality of such information is maintained to avert embarrassment and distress. Although such statutory protection is limited. The general safeguards for confidential information offered in English law derive from case law developed in the courts and are restricted in what is known as the equitable remedy of breach of confidence. If information is entrusted to a health care professional in a situation in which that information is the subject of an obligation of confidence expressed or implied then, if the health care professional makes an illegal disclosure of that information, the patient might begin legal proceedings.
The usual remedy here will be a restriction to stop further disclosure of the information.However, this legal obligation of confidence is not complete. First, the patient might herself sanction disclosure through giving state approval to disclosure. Second, information might be made known in situations in which it is in the ‘public interest’ to do so.
As was confirmed by the House of Lords in AG v Guardian Newspapers (No. 2) ([1988] 3 All ER 545), the compulsion of confidentiality must be balanced against the necessity that disclosure is in the public interest. There is no one broad definition of what precisely constitutes the ‘public interest’ (Jones, M. 1990).
In breach of confidence cases relating to health care information the courts have taken note of the statements of confidentiality and settled exceptions recognized by the General Medical Council (e.g., W v Egdell [1990] 1 All ER 835).The idea of privacy encompasses protection of access to one’s own personal information and one part of such control is managing over personal information which individuals might regard as ‘confidential’.
These days’ privacy rights are normally enshrined in human rights declarations such as the European Convention on Human Rights (Article 8). This principle has been avowed in the recent European Convention on Human Rights and Biomedicine (Article 10).As the UK has been a party to the European Convention of Human Rights for numerous years, we have not had our own home-grown Bill of Rights akin to that of the European Convention until now. The Human Rights Act 1998 need the courts to give effect to legislation in a manner attuned with the European who are HIV positive can result and have resulted in people being sacked from their jobs, being dispossessed from their rented accommodation, and being subjected normally to a wide range of off-putting discrimination and abuse.
Likewise, careless breaches of confidentiality concerning a person’s mental health status (comprising mild depression and grieving states) can also consequence and have resulted in harmful consequences, together with persons losing their jobs or having their career prospects’ vulnerable. It is vital, therefore, that every effort is made to make sure that information disclosed in the professional clients’ correlation is kept secret. This is not to say, though, that there is not a need for the principle of confidentiality to be construed better and applied more fairly than it has been in the past. Points of clarifications which need to be mainly addressed are summarized as follows:1.
Confidentiality is at best only a prima-facie principle, not a complete one, and thus is one which might be overridden by stronger moral deliberations;2. Confidentiality must not be upheld in instances where doing so will consequence in otherwise needless harms occurring to innocent others; and3. While patients/clients as a common rule have a right to have certain information about them kept secret, the prerogative is forfeited where it stands fatally to impose on the moral interests of innocent others. (Wright, M.
1997) If these points of amplification are accepted, it should also be accepted that patients (or anybody else, for that matter) might not always be permitted to have certain information about themselves kept secret; and that revelation, in several instances, might even be an overriding moral duty, mainly in cases where non-disclosure needs the probability of innocent others suffering preventable and avoidable harms for instance, children as in the case of child abuse. This subsequent demand is also enshrined in legal law, which needs health professionals to report certain transmittable diseases (usually referred to as ‘notifiable diseases’), suspected cases of child abuse, and other activities ‘which are potentially or in fact dangerous to the health of others’ (Wallace 1991, p. 303). Convention on Human Rights and it is expected that there are increased proceedings in this area on human rights issues, such as a right to privacy in the future.
Nevertheless, privacy rights are rarely considered in absolute terms. They are customarily qualified by other considerations. Professional GuidelinesConfidentiality is a significant moral requirement of any health care professional patient/client relationship, and one that is vital to ensuring the protection of a patient’s/client’s comfort and moral interests (Mulholland, M. 1997).
Indiscriminate breaches of confidentiality can have morally detrimental and catastrophic consequences for patients/clients. For instance, careless breaches of confidentiality relating to personsWhatever the situation nearby, nurses’ decisions to stay secret or to disclose certain information gained in a professional client or other kind of relationship (for instance, an employee employer relationship) should always be based firmly on sound moral validations and moral decision-making procedures. Nurses besides this also need to remember that uninformed disclosure is just as morally erratic as arbitrary non-disclosure, and might have just as many devastating consequences. As in any ethically troubling situation, dilemmas posed by a contentious application of the principle of confidentiality should be resolved in a way which makes certain the realization of morally just outcomes.
ConclusionI would like to ask to whom are the British ethical committees currently accountable, and how are their significant responsibilities exercised, monitored and controlled? I doubt that there are reasonable answers at present. I would hope that nurses in particular will come to apply pressure for the improvement of ethical review in the UK. After all, as advocates of patients and clients they might have a special responsibility in this regard.I appreciate that the epidemiological surveillance of HIV/AIDS for the reason of public health is a team effort, a team comprising epidemiologists, medical doctors, non-medical doctors, scientists, statisticians, nurses, midwives, health visitors and others.
But what continues to be a fundamental concern for many nurses such as myself is the apparent lack of regard for the ethical issues involved.Though, it must be possible to learn from mistakes made in the chronological past during great epidemics and resist public health measures which are simple and unthinking. The deception and confidentiality and breaches of human rights which lean to occur in these situations, either deliberately or by mistake, cannot be justified even in the case of HIV/AIDS. With changes in attitudes and ethical responsiveness epidemiologists could produce surveillance and research programmes which respect approval, confidentiality and other rights.
This would not make the control of the epidemic harder, but it would make it easier.The focus must be taken off the need to test and enumerate HIV/ AIDS sero-positive individuals. At the instant the only means of preventing or reducing the spread of HIV, which has any achievement lies at the level of the individual. The course of the contagion will be determined by what changes each individual is ready to make to his or her sexual behavior.
So the public health authorities cannot afford to estrange individuals with high-handed and insensitive behavior on their part. Nurses, I believe, have a vital role to play in taking public health policies and administration closer to the people.References:http://www.ethox.
org.uk/Ethics/econfidential.htmhttp://www.bma.
org.uk/ap.nsf/Content/Confidentialitydisclosure~definitionshttp://www.law.
ed.ac.uk/ahrb/personality/zacases.aspHuman Fertilization and Embryology Act 1990 (c.
37)(NHS Venereal Disease Regulations SI 1974 No. 29).Attorney General v. Guardian Newspapers, (1988) 3 All ER 545W v Egdell [1990] 1 All ER 835 and X v Y [1998] 2 All ER 648Wallace, M.
(1991). Health care and the law: a guide for nurses. The Law Book Company, North Ryde.Wallace, M.
(1992). Meeting the challenge of patients’ rights: a legal perspective. Proceedings of the conference ‘Meeting the Challenge of Patients’ Rights — Issues for the 1990s’, RMIT Faculty of Nursing, Nursing Law and Ethics, 4th Victorian State Conference, held 20 November, Dallas Brooks Hall, Melbourne, Royal Melbourne Institute of Technology, Faculty of Nursing, Melbourne.Jones, M.
(1990) ‘Medical confidentiality and the public interest’, Professional Negligence, 6:16.Mulholland, M. (1997) ‘Public nuisance: a new use for an old tool’, Professional Negligence, 11:70.Wright, M.
(1997) ‘Health care workers and HIV screening’, Journal of Social Welfare and Family Law 19 (1): 16.
