IT IS widely accepted that autonomy is a principle of paramount importance in Western medical ethics and law. Autonomy underpins the legal and ethical approach to consent, confidentiality, and privacy in the medical context — especially in relation to data protection and information disclosure.
The law, in particular, has interpreted the meaning of patient autonomy in a strongly individualistic sense: the patient is “atomised” in relation to his or her treating clinicians and family.
Accordingly, clinicians are required to abide by the medical decisions that patients make, even if those decisions are unwise and harmful to the patient themselves, provided that they are capable of making an autonomous decision. Even if patients do not have the capacity to make their own decisions, owing to disease or illness, clinicians can take the interests of others, such as family members, into account only in so far as they bear on the interests of the patient.
This individualistic interpretation of autonomy, which keeps the patient’s interests and the interests of third parties completely separate, is coming under serious challenge in the area of medical genetics as a result of a recent court case.
The case involved a patient who refused to allow his doctors to disclose his diagnosis of Huntington’s disease to his pregnant daughter, who subsequently gave birth to a healthy child, before discovering, after an accidental tip-off, that she, too, had inherited the incurable and invariably fatal condition.
She said that her father’s clinicians had a legal duty to inform her of the health risks to which she was vulnerable, arising from the genetic information that they had obtained from their therapeutic relationship with her father. She also said that had she been told of her father’s condition, she would have had a genetic test for Huntington’s, and, on confirmation that she had inherited the genetic mutation, sought a termination of the pregnancy — an option that was no longer open to her. If a parent has Huntington’s disease, there is a 50-per-cent chance that his or her child will have it as well.
THE case is full of complex legal technicalities which we need not enumerate here. But, in essence, the High Court upheld the traditional individualistic interpretation of autonomy, holding that that it would be unfair, unjust, and undesirable as a matter of public policy to place clinicians under a legal duty to disclose confidential genetic information to relatives without the patient’s consent.
This was so even where that information was of a kind that the relative would need to know to register, avert, or minimise potential serious harm to themselves owing to the risk of having a serious genetic condition. The High Court sought to preserve the traditional, narrow doctor-patient focus, refusing to expand the clinical duty of care to encompass those who, although not being patients, strictly speaking, clearly have a significant personal interest in obtaining information about the patient’s genetic condition.
The Court of Appeal, however, disagreed. Eschewing the High Court’s stringently individualistic approach to autonomy, it adopted a more relational approach. It pointed out, among other things, that clinicians and genetic counsellors were already having to weigh in the balance the respective interests of patients and family members, which are, in the genetic context, inextricably linked.
Indeed, as the appeal court noted, good medical ethics and good practice standards, reflected in professional guidelines, have required this for some time. It recognises that patients cannot be treated as atomised individuals, distinct from those around them. The genetic solidarity that binds the human race together, let alone relatives and family members, compels understanding of human persons as social beings whose individual decisions, especially in the context of genetic medicine, always have implications for significant others.
IN OTHER words, the courts — at least in the context of genetic medicine — are beginning to recognise that humans are quintessentially relational beings.
A relational understanding of autonomy accords with a traditional Judaeo-Christian theological perspective. It is clear from the biblical creation story that God creates human beings for relationship and imbues them with a relational consciousness. God recognises that it is not good for human beings to be alone, and identifies a suitable human companion.
The early Christians, as St Paul testifies, believed that they belonged together in such a special way that they spoke of themselves as constituting one body: “the body of Christ”, the basis for solidarity in joy and suffering, the basis for “Christian” compassion. No member of this body can sequester himself or herself from any other in pursuit of an isolated existence and stand true to the reality of the human condition.
If the courts are beginning to understand this in the context of medical law, it is a welcome development. Good law requires not only good facts, but also an understanding of the true nature of the human person.
The Revd Dr Mark Bratton is Rector of Berkswell, in Coventry diocese. He is a former barrister, and is currently Associate Fellow in Clinical Ethics and Law at the University of Warwick Medical School. He is the Bishop of Coventry’s adviser on medical ethics.