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(9) Ethics in medicine

Patient Confidentiality: An Ethical Dilemma

The History of Confidentiality in Medicine


How modern genetics is testing traditional confidentiality

What a prodigious thing it is that within the drop of semen which brings us forth there are stamped the characteristics not only of the bodily form of our forefathers but of their ways of thinking and their slant of mind. Where can that drop of fluid lodge such an infinite number of Forms? . . . We can assume that it is to my father that I owe my propensity to the stone, for he died dreadfully afflicted by a large stone in the bladder . . . Now I was born twenty-five years . . . before he fell ill . . . During all that time where did that propensity for this affliction lie a-brooding? When his own illness was still so far off, how did that little piece of his own substance which went to make me manage to transmit so marked a characteristic to me? And how was it so hidden that I only began to be aware of it forty-five years later . . . ?

(Montaigne, ‘On the Resemblance of Children to their Fathers’)

The fifth metacarpal is the bone that runs along the edge of the palm of the hand between the wrist and the base of the little finger. A fracture to this bone near to the knuckle can result in one way only: from punching someone or something with a clenched fist. Patients, of course, may not like to admit this; but the fracture discloses the truth. Modern genetics, increasingly, is able both to reveal the past and to foretell the future. And it goes further. A genetic test from one person can provide information about a relative. This was possible to a limited extent before modern genetics. What is new is the extent to which these possibilities can be realized; and this extent is forcing us to rethink medical confidentiality.

Case 1: Genetic tests reveal secrets of paternity

Let me start with the revealing of secrets. Here is a realistic case from a modern genetics service reported in The Lancet. John and Sarah attend the genetics clinic after the diagnosis of an autosomal recessive condition in their newborn baby. The disorder is severe and debilitating and there is a high chance that the child will die in the first year. The gene for this disorder has just been mapped and there is a possibility that prenatal diagnosis would be possible in a future pregnancy. John and Sarah give their consent for a blood sample to be taken for DNA extraction, from themselves and their affected child.

At the first meeting with the geneticist the couples are told that the chance of any of their future children having the condition is 25 per cent. This is correct on the assumption that John was the biological father of Sarah’s newborn baby. Molecular analyses of the DNA samples, however, reveal that John is not the father of the child. One implication of this is that any future baby, who is the biological child of John and Sarah, is very unlikely indeed to have the debilitating condition. This is because only about one in 1,000 people have the recessive gene. John will almost certainly have the normal gene, and this will prevent his children from having the condition. Should the geneticist disclose, to John, the finding that John is not the father of the newborn baby? One important US report recommends disclosure to both partners in situations like this. But this report stands alone in preferring an honest and open approach. The influential Committee on Assessing Genetics Risks at the Institute of Medicine in the US recommends that in cases like these only the woman should be told and that: ‘Genetic testing should not be used in ways that disrupt families’. Most surveys suggest that most geneticists support this latter approach, both in the US and Europe. A cross-cultural comparison in 1990 argued that ‘Protection of the mother’s confidentiality over rides disclosure of true paternity’. Many geneticists would be prepared to tell a lie or fudge the issue, for example by claiming that the child with the condition has the condition as a result of a new mutation, rather than being honest with their patient. A survey of patients, as opposed to doctors, carried out in the US, suggested that three-quarters thought that the doctor ought to tell the husband that he is not the father of the child, at least if he asked directly. The majority of those in that survey were women.

Medical confidentiality

Hippocrates, known as the Father of Medicine, was born on the Greek island of Cos in about 460 bc. The Hippocratic Oath is one of the earliest known sets of professional guidelines for doctors. Some of the guidelines now seem dated. It is unlikely that the medical students whom I teach would see their obligation to me as quite so significant as Hippocrates’ Oath would require. I will honour the man who teaches me this art as my own parents; I will share my living with him and provide for him in need; I will treat his children as my own brothers and teach them this art, should they wish to learn it, without charge or stipulation . . . But what the Oath says about confidentiality is much more relevant: Whatever I may see or learn about people in the course of my work or in my private life which should not be disclosed I will keep to myself and treat in complete confidence . . . In order to pursue the question of the limits of confidentiality I want to make a case comparison: to consider a case that has some features in common with the one I have just been discussing, but where it is perhaps clearer what a doctor ought to do.

Case 2: Paternity revealed by the mother

 . . . Following a healthy pregnancy and birth Mary visits her general practitioner for her routine 6-week postnatal visit. Mary’s husband, Peter, is registered with the same GP. During the consultation Mary reveals that Peter is not the father of her child. In a case like this it would be widely accepted that the doctor should not breach the confidentiality of Mary. Doctors, and other professionals, have to take professional guidelines seriously into account when deciding what to do. There would need to be very good reasons why an individual doctor would go against his professional guidelines. The General Medical Council is the professional body for UK doctors. Its guidelines state: Disclosure of personal information without consent may be justified where failure to do so may expose the patient or others to risk of death or serious harm. Where third parties are exposed to a risk so serious that it outweighs the patient’s privacy interest, you should seek consent to disclosure where practicable. If it is not practicable, you should disclose information promptly to an appropriate person or authority. You should generally inform the patient before disclosing the information. In applying such guidelines to a particular situation some interpretation is needed. In this case such interpretation seems relatively straightforward. The harm of not telling Peter does not amount to ‘risk of death or serious harm’. The doctor, therefore, should not breach Mary’s confidentiality.

Comparing cases 1 and 2

If the doctor should not breach confidentiality in case 2, does it follow that the geneticist should keep quiet about the question of paternity in case 1? There are important differences between the two cases. In case 1, the fact of non-paternity was discovered as a result of tests for which both John and Sarah gave consent. In case 2 this fact was revealed only by Mary. In case 1, John and Sarah came to the geneticist together to discuss an issue of joint concern. The information concerning paternity is directly relevant to the issue about which John and Sarah came jointly to see the geneticist. Informing Sarah alone does not respect John’s interest in knowing the information.

The foundations of medical confidentiality

The case comparison may leave us in doubt about what the geneticist should do in case 1. Consideration of case 2 provides some reasons why the geneticist should keep information about paternity secret from John. But case 2 differs from case 1 in some important respects that might make all the difference. Perhaps we can be helped by going back to theory and asking what are the fundamental reasons why maintaining medical confidentiality is important. The three most commonly given answers to this question are: respect for patient autonomy; to keep an implied promise; and to bring about the best consequences.

Respect for the right to privacy

 An important principle in medical ethics is respect for patient autonomy. This principle emphasizes the patient’s right to have control over his own life. This principle implies that a person has the right, by and large, to decide who should have access to information about himself – i.e. a right to privacy. On this view the patient who reveals information about himself to the doctor has the right to determine who else, if anyone should know that information. That is why the doctor should not normally pass that information on to a third party without the patient’s permission.

Implied promise

Some argue that the relationship between doctor and patient has elements of an implied contract. One of these elements is that the doctor, by implication, promises not to breach patient confidentiality. Thus patients may reasonably believe that when they come to their doctors there is an understanding that what they say will be kept confidential. On this view, the reason why a doctor should not breach confidentiality is because to do so would involve breaking a promise.

Best consequences

 One of the major theories in moral philosophy claims that the right action in any situation is the one that has the best consequences. On this view, it is important that doctors maintain confidentiality because so doing leads to the best consequences. Only if doctors are strict in maintaining confidentiality will patients trust them. And such trust is vital if patients are to seek and obtain the necessary help from doctors. Do these theories help us in answering the question: should the geneticist tell John that he is not the father of the newborn baby?

The theory of respect for autonomy is ambiguous when we try to apply it to case 1. It all depends on whose autonomy we focus. John’s autonomy is respected by telling John; Sarah’s by keeping it secret from John (unless Sarah gives permission to tell John).

The implied promise theory is similarly problematic. In normal clinical practice, as exemplified by case 2, it is clear that the patient (Mary) can expect the doctor to respect her confidentiality. But it is not so clear what the implied elements of the ‘contract’ are in case 1. John might reasonably expect that all information relevant to future reproductive choices will be shared openly with both him and his wife. A consequentiality account certainly gives reasons for why the doctor should not breach confidentiality on the grounds of the possible deleterious effect on the family. This is the main reason why most geneticists would not tell John that he is not the biological father of Sarah’s child. But it is not entirely clear that the consequences of keeping John ignorant are better than informing him of the truth. Is it right that Sarah needs to be protected from the consequences of her act and will it be better for the family if this remains a secret? This is an example of a major practical problem with consequentialism: even if you think that consequentialism is the right moral theory, it is often impossible to determine with sufficient degree of certainty what the various consequences of different courses of action

are likely to be. It seems that returning to the fundamental theory of what underpins the moral importance of confidentiality has been of no more help than case comparison. We remain uncertain whether the doctor should tell John that he is not the biological father of Sarah’s child. The difficulty, I believe, is that we have been focusing on the wrong aspect of the problem. The key question is not whether there are sufficient grounds, in terms of John’s interests, for breaching Sarah’s confidentiality. The question is whether the information that the newborn baby is not, contrary to John’s current belief, his biological baby, is as much ‘his information’ as Sarah’s. Whose information is it? Let us examine this question through the lens of a further case.

Whose information is it? Case 3: Secrets and sisters

A four year old boy has been diagnosed with Duchenne Muscular Dystrophy (DMD) . . . DMD is a severe, debilitating and progressive muscle-wasting disease in which children become wheelchair bound by their early teens and usually die in their twenties. It is an X-linked recessive condition and whilst it is carried by girls it is only . . . boys who are affected. The boy’s mother, Helen, is shown to be a carrier for the mutation. Women who are carriers do not show symptoms of the condition, but half of their sons will inherit it from them and will be affected.

Helen has a sister, Penelope, who is ten weeks pregnant. Penelope’s obstetrician referred her to the genetics team after she told him that her nephew had speech and development delay. She told him that although she was not close to her sister and had not discussed it with her, she was concerned about the implications for her own pregnancy. In her discussions with the clinical geneticist (who did not know at this stage that both sisters were patients in the same clinic) Penelope made it clear that she would consider terminating a pregnancy if she knew that the fetus was affected with a serious inherited condition. Speech and development delay are features of a range of conditions and would not of them indicate carrier testing for DMD. In addition, because the DMD gene is large and there are a number of possible mutations, testing without information about which mutation is responsible for the nephew’s condition is unlikely to be informative.

At her next meeting with her clinical geneticist, Helen says that she knows that her sister is pregnant and that she understands that the pregnancy could be affected. She also says that she has not discussed this with her sister, partly because they don’t really get on, but also because she suspects that if her sister were to find out, and if the fetus turned out to be affected, she would terminate the pregnancy. Helen feels very strongly that this would be wrong. She knows that her sister does not share her views, but Helen says she has thought long and hard about the issues and has decided that she wants her test results and information about her son to remain confidential. (Parker and Lucassen, Lancet, 357 (2001))

I want to put aside the question of whether Penelope should or should not have a termination if her foetus carried the gene. Parker and Lucassen propose two models: the personal account model and the joint account model.

The personal account model

The personal account model is the conventional view of medical confidentiality. On this view the information about Helen’s genetic state – as a carrier of Duchenne’s muscular dystrophy – ‘belongs’ to Helen, and Helen alone. Respect for such confidentiality is important. It has, however, long been recognized that there are limits to such confidentiality, as has already been highlighted by the GMC guidelines quoted above. But these limits are the exception.

On this view the key question is whether the foreseeable harms to Penelope if the information is not disclosed are sufficiently serious to justify breaching Helen’s confidentiality.

The joint account model

On the joint account model, genetic information, like information about a joint bank account, is shared by more than one person. Helen’s request is not about the appropriate limits of confidentiality – it would be analogous to asking the bank manager not to reveal information about a joint account to the other account holders. On this view genetic information should be seen in a completely different way from most medical information. It is information that should be available to all ‘account holders’ – i.e. to all (close) genetically related family members. That is, unless there are good reasons to withhold the information.

These two models see the onus of proof, with respect to sharing information, in opposite ways. On the conventional, personal account, model we ask: are the harms to Penelope so great that they override Helen’s right to confidentiality? On the joint account model the genetic information, although obtained from Helen’s blood and medical history, ‘belongs’ to the family. Penelope has a right to such information as it is key information to help her to know important aspects of her genetic make-up. There would need to be a very good reason, in terms of Helen’s interests, to justify denying Penelope access to the genetic test for DMD.

Helen knows something not only about herself and her son but also about Penelope and her unborn child. Helen knows that Penelope’s foetus has a significant chance of suffering from DMD; but Penelope does not know this. This asymmetry of knowledge is unfair to Penelope. The personal account model fails to take this fact into account.

Genetic information challenges the individualistic nature of many of the moral assumptions made in discussions of medical ethics in both Northern Europe and North America. Perhaps the cases we have been considering raise a deeper issue about medical confidentiality in some other settings. We are interconnected, both biologically and socially. No man is an island, entire of it. Indeed our connections with each other extend not only to our close genetic relatives but across the globe. 



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