This article appears in the November 2000 edition of the Catholic Medical Quarterly
Right to Privacy - Right to Information
Fr Terence Phipps
Paper presented at the International Medical Congress, Rome, July 2000
I wrote this paper in January of this year, and an interesting political and legal controversy served to focus my interest in it. Former President Pinochet of Chile was at the centre of a storm about whether he should be extradited from Great Britain to stand trial in Spain. After many legal wranglings, the British Government seemed to want to send him to Spain, but then medical tests were ordered, which attempted to assess whether he was fit enough to stand trial at all. The results of the tests went to the Home Secretary and he decided that he was minded, on the basis of the results, to send Mr Pinochet back to Chile since he was incapable of standing trial owing to his poor health. A number of individuals and organisations, including the Belgian Government, contested this decision on the basis that the results should have been made public, so that everyone should be able to judge the basis on which Britain was making its decision. So here we had a situation in which the patient’s right to privacy and the normal confidentiality of medical records were being challenged on the basis that people had a right to know specific information in order to assess a legal decision.
In more ordinary and less public circumstances there are also conflicts between the right to privacy and the right to information. Doctors over the centuries have often withheld information about the true extent of their patient’s illness in order not to distress them too much.
…from the time of Hippocrates (5th century BC) until about 1960, it has been part of medical wisdom that the disclosure by doctors to sick patients of their medical details can lead to loss of hope and so to a worsening of their condition. Hence during all this time it was regarded as imprudent or even negligent to provide information to patients that might be badly received, and so it was considered in the best interests of patients to withhold information from them.
Many patients have been unaware that they were part of an experimental procedure designed to push forward the frontiers of either medicine or warfare. On discovery of such information there have been many attempts at compensation based on a violation of privacy and autonomy. Recent cases in Britain have involved the removal of organs from dying children without their parents’ consent and complaints about medical treatment of soldiers during the Gulf War which has resulted in a large number of people suffering from what is known as ‘Gulf War Syndrome’. In both cases there has been considerable evasion on the part of the authorities, both government and hospital.
Sometimes this conflict in rights to information and privacy is not the result of what might be called medical paternalism, but rather a stated desire on the part of the patient that information should not be disclosed. A celebrated case in England a few years ago challenged the practice of doctors who prescribed the contraceptive pill to girls under sixteen years of age, without the consent of their parents. Many people thought that by forcing the girls to tell their parents they would be much less likely to seek medical help and continue with sexual activity that would lead to a huge increase in unwanted pregnancies. This, interestingly enough, did not happen. In other controversial areas, people have asked not to know the results of HIV tests so as not to find themselves compromised or inconvenienced. They have further requested that the information be kept secret from employers and insurers so that they would not suffer harassment or financial embarrassment. Women who have had several abortions sometimes want no mention made of this made to the specialist in case their new husband finds out. Doctors are constantly asked to connive in deception so that other, sometimes interested, parties may not find out information that might be sensitive.
But how far does our right to privacy extend and is the current trend towards the complete disclosure of information and fully informed consent to any medical procedure the right way forward? There are a number of definitions of privacy ranging from the popular idea of "being let alone" to the radical statement that "in perfect privacy no one has information about X, no one pays attention to X, and no one has physical access to X". It seems to me evident that "when people seek the help of health-care providers, and thus become patients, they exchange some of their privacy for the chance to be healed, diagnosed and protected from illness." But what sort of privacy is meant here? We need carefully to distinguish various strands or meanings. "The word ‘privacy’ has three major usages, corresponding to what some scholars regard as three distinct forms or conceptions of privacy: physical privacy, informational privacy and decisional privacy" Clearly, complete physical privacy is incompatible with proper healthcare. The doctor or nurse will inevitably have to do things to patients, which, in the normal course of events, would be considered improper or even liable to criminal prosecution. Yet we willingly surrender this privacy in the hope of being cured. It is only when the medical practitioner oversteps the bounds of physical privacy that any protest is made. Sometimes, of course, there are difficulties when an individual patient (or their spouse or guardian) is unwilling to submit to intimate procedures undertaken by a doctor or nurse of the opposite sex. These may well have to be resolved by careful diplomacy and tactful and professional care.
We have already alluded to some of the difficulties faced when we focus on informational privacy. "Informational privacy concerns in the health care setting have traditionally focused on the confidentiality of the physician-patient relationship and on limiting access to medical and insurance records" But increasingly there are further problems relating to things like governmentally mandated testing, reporting and identification. And these problems are not only related to individuals. There are a number of difficulties when family members with similar genetic predispositions are involved, and the Human Genome Project has only served to highlight such difficulties. Anonymous epidemiological studies also give rise to concern, for they sometimes mean that information is not passed on to people who need it because the link between patient and symptom has been intentionally blurred.
In hospitals and consulting rooms there has to be careful monitoring of information so that it may not get into the wrong hands. There are the inevitable locked doors and filing cabinets, and the use of passwords and encoding on computers. But this in turn has led to demands that the patient concerned should have access to any information that is held on him or her. In Britain we have the Data Protection Act which allows access to personal information held on computer, and this will soon be extended to personal information howsoever stored. This seems on the face of it to be a great step forward in the openness required for medical practice in the 21st century, but, as we all know, if records are open to scrutiny by patients or their families then there is a great temptation to write nothing of any importance in them, in case it may be misinterpreted or lead to litigation.
Decisional privacy, too, has serious implications for health care. "Decisional ‘privacy’ signifies the ability to make one’s own decisions and to act on those decisions, free from governmental or other unwanted interference." This can influence decisions about treatment, the withdrawal of treatment and the allocation of medical resources and often leads to complicated disputes about who has the right to choose or the right to decide. In the United States many of the decisions taken by the courts with relation to abortion, birth control, marriage and parental authority have been based on this notion of decisional privacy and the consequences have been enormous. This has led to great legal controversy in the US, but it has become a decisive factor in the way that the courts and medical practice run their affairs. Decisional privacy can often lead to conflict between doctor and patient. Some doctors feel that lifestyle choices made by their patients can materially affect the kind of treatment they wish to propose (eg a heavy smoker who refuses to give up smoking); and some patients see no reason why they should disclose information on their lifestyle to the doctor if they feel it will compromise the relationship that exists between them.
This matter can be still further complicated when the disclosure of information relates to the doctor rather than to the patient. There has already been an authenticated case of HIV infection being passed on by a dentist to his patients, so it might be argued that all dentists and doctors, especially surgeons, should disclose their status to their patients. If it is a patient’s right to know the HIV status of his doctor then this right is obviously in conflict with the doctor’s own right to privacy and confidentiality, and much good will may be lost in pursuing the patient’s desire for information. The British Medical Association has reached a compromise on this by saying that if a health professional in a particularly risky area such as surgery knows he or she is HIV-positive, this should be revealed in confidence to colleagues and a change to another less risky area of work arranged. Others say that since the risk of passing on infection is so very small, then it can be prevented almost entirely by proper use of universal blood and body fluid precautions. In any event, we can certainly say that the AIDS pandemic has thrown into stark relief many of the conflicts relating to the individual’s right to privacy.
A final area of conflict relates to the business of the informed consent of the patient to any medical or surgical procedure and, perhaps more importantly, to participation in any research project. It is becoming more and more widely accepted that it is the doctor’s duty to provide the fullest possible information concerning any procedure that is to be undertaken and this information should include possible consequences and likely prognosis or hope of success. There is much anecdotal evidence that certain patients would never have consented to an operation had they known fully what the likely consequences of it would be; and there are also many doctors who maintain that patients misunderstand – often wilfully – what is being told to them since they are in such a state of anxiety. Yet, as Roger Holmes says: "If it is our duty as professionals to explain, it is our duty to do it well." The information must be given carefully and honestly if any properly informed consent is to be made.
This is doubly the case in any research project, where the problem of confidentiality of information and records is particularly acute. In the Netherlands, for example, the Medical Research Involving Human Subjects Act came into force on 1 December 1999, and this can sum up the sort of legislation and practice that most countries insist upon. In Section 3, subsections 3 and 4, it states:
Before consent for a person’s participation as a subject is requested, the party performing the research shall ensure that the person from whom consent is requested is informed in writing of the following:
a. The aim, nature and duration of the research;
b. The risks to the subject’s health which could be associated with participation;
c. The risks to the subject’s health which could be associated with the premature ending of the research;
d. The burden for the subject which could be associated with participation.
The information referred to in this section, 3rd subsection, shall be provided in such a way that there may be no reasonable doubt that it has been understood by the recipient. The recipient shall be given sufficient time to consider properly the information and to reach a reasoned decision regarding consent.
There are many other problems relating to research, such as the anonymity of the subjects, the re-use of old data for new research, the difference between information that relates to the participant in the research and that which relates to his family or intimate circle who may not have consented, but there is not time to discuss them here.
I hope that in this brief paper I have been able to show that there are many areas of conflict when the right to privacy and the right to information are considered. Nonetheless, I believe that proper management of information and records and a careful and clear imparting of information can sort out many of these conflicts in advance. We all have a desire and need for the truth. In medicine, as in other spheres of life, we need to learn the truth, and the truth will make us free. (John 8:32)
Fr Terence Phipps is National Chaplain and Ecclesiastical Advisor to the Guild.