Informed Consent through a Relational Lens in Latin American Bioethics — Epoche C1
What the consent requirement actually demands The rule that a clinician must obtain a patient's own agreement before performing a procedure is not a single requirement but five, and the argument about relational autonomy turns entirely on which of the five is at stake. In the standard analysis given by Beauchamp and Childress, an informed consent consists of competence (the patient's capacity to understand and decide), disclosure (the information the clinician must provide), understanding (that the information actually landed), voluntariness (freedom from controlling influence), and authorisation (the patient's act of empowering the clinician to proceed). Only the last is an act; the other four are conditions on it. The historical source of the requirement explains its shape. The Nuremberg Code, set out by the American military tribunal in 1947 in its judgment on the physicians who had experimented on concentration camp prisoners, opens with the sentence that "the voluntary consent of the human subject is absolutely essential", and immediately specifies what that means: legal capacity, freedom of choice without force, fraud, duress or coercion, and sufficient comprehension to make an enlightened decision. Every clause of that first article is a description of something the Nazi physicians had removed. The doctrine was drafted, in other words, as a barrier against a specific historical abuse — a third party deciding what should be done to a person's body without that person's agreement — and its individualism is the direct expression of that purpose. This matters for the argument to follow, because a critique of the doctrine's individualism that cannot distinguish itself from the situation the doctrine was built to prevent has not yet become an argument. Which individualism is under attack The critique in its usual form holds that the doctrine rests on a liberal picture of the person as an isolated chooser, and that this picture misdescribes the way health decisions are made in much of the world. One clarification is needed before the critique can be assessed, because as stated it attacks a position that its named opponents do not hold. Beauchamp and Childress define an autonomous action by three features — that it is intentional, that it is done with understanding, and that it is free of controlling influences — and none of these requires a self that is unformed by relationships. Their principle of respect for autonomy is a constraint on what others may do to a person, not a theory of what a person is. What the critique does successfully target is the operational form the doctrine has taken: the consent interview conducted with the patient alone, the signature block, the disclosure of a diagnosis to a patient who may have preferred to receive it in company or not at all. That is a claim about procedure, and it is a much stronger claim than the metaphysical one, because it can be checked against what people actually say they want. What has been measured The best-known measurement is by Blackhall, Murphy, Frank, Michel and Azen, who in 1995 surveyed 800 people aged 65 and over in Los Angeles, 200 from each of four backgrounds, asking what they believed should happen when a patient has a serious illness. Two of their findings are directly relevant. Proportion who believe... European American African American Mexican American Korean American the patient should be told a diagnosis of metastatic cancer 87% 88% 65% 47% the patient should decide about the use of life-supporting technology 65% 60% 41% 28% The differences are large and they are in the direction the relational critique predicts. But three things must be read off the same table. First, what was measured was attitudes , elicited by interview from elderly residents of one American city — not the behaviour of clinicians, and not anything about Latin America itself; the Mexican American column is the closest the study comes, and it is a column about immigrants and their descendants in California. Second, the within-group variation is at least as striking as the between-group variation: 65% of Mexican American respondents favoured disclosure, so a doctor who inferred from ethnicity that a given patient did not want to be told would be wrong about a clear majority of them. Third, Blackhall and her colleagues drew exactly this conclusion themselves, recommending not that clinicians withhold information from members of certain groups but that they ask each patient how that patient wishes information to be handled and decisions to be made. The study is evidence for a procedural reform, and evidence against using cultural membership as a proxy for an individual's preference. Three claims that must be kept apart Relational autonomy, the framework the original formulation of this note invoked, is not one thesis but a family of them, and the collection edited by Mackenzie and Stoljar exists largely to separate them. Three should be distinguished here, in ascending order of contentiousness. The constitutive claim. Persons are formed by their relationships: the capacities exercised in choosing — deliberation, self-knowledge, confidence that one's judgment counts — are developed in and sustained by social ties. This is very widely accepted and it contradicts nothing in the consent doctrine. The procedural claim. Because deciding is a social act, the process of obtaining consent should admit the people through whom the patient thinks: disclosure may be made in the presence of family, deliberation may take days rather than minutes, and the clinician's job includes making that possible. This is the reform the Blackhall data supports. The authority claim. Where the patient's family or community has reached a view, that view may determine what is done, even against the patient's expressed wish. The original text moved between these without marking the transitions, and the argument only appears to succeed because the evidence for the first two is quietly