Personal autonomy and informed consent

Abstract

Two ways of understanding the notion of autonomy are outlined and discussed in this article, in order to clarify how and if informed consent requirements in biotechnological research are to be justified by the promotion of personal autonomy: A proceduralist conception linking autonomy with authenticity, and a substantivist conception linking autonomy with control. The importance of distinguishing autonomy from liberty is emphasised, which opens for a possible conflict between respecting the freedom and the autonomy of research participants. It is argued that this has implications for how consent requirements based on different criteria of specificity and understanding should be viewed and justified.

Patients’ perceived purpose of clinical informed consent: Mill’s individual autonomy model is preferred

“…Supporters maintain that the exercise of informed personal deliberation is not an absolute right and does not have enough intrinsic value to justify a public policy or to have priority over other ethical considerations such as beneficence, justice, common good, and trust. According to the procedural account of autonomy [18,19], it is possible for an autonomous agent to have reflective but unconditional obedience, and thus the purpose of the informed consent process is to obtain an informed permission but not necessarily to promote participation in decision-making. The purpose is to afford patients the opportunity to be autonomous rather than forcing them to be so.…”

“…This view places more emphasis on the responsibility of clinicians to promote both the well-being and autonomy of patients. It has been noted that the word “consent” derives from the Latin con sentire, which means to think or feel together [19,21]. Shared decision-making can take several forms.…”

“…Support for the paradigm of shared decision-making has been recently articulated by an international consensus panel in the “Salzburg statement on shared decision-making [26]. According to Millian account of autonomy, it is important to promote patient’s self-reflection and enable patients to decide for themselves [18,19]. In contrast to the proceduralist account, which links autonomy with internal authenticity, the Millian account links autonomy to control, and autonomy is clearly differentiated from liberty (freedom of choice) and entails taking responsibility [10,19].…”

“…According to Millian account of autonomy, it is important to promote patient’s self-reflection and enable patients to decide for themselves [18,19]. In contrast to the proceduralist account, which links autonomy with internal authenticity, the Millian account links autonomy to control, and autonomy is clearly differentiated from liberty (freedom of choice) and entails taking responsibility [10,19]. Patients can not simply trust the clinician to take good care of them; they can not freely decide to live in an obedient way, ignore information, or let others decide.…”

The Autonomy Experience of Patients in Palliative Care

“…1,2 Beginning in childhood, individuals are encouraged to walk by themselves, express their ideas, make their own decisions, perform duties, and plan their own future. Human nature drives the autonomous person to achieve and to take responsibility for the actions they choose to undertake.…”