16 - Informed consent: what should we be doing?

Summary

Introduction: consent, choices and decisions

The concept of informed consent is central to the delivery of ethical healthcare services. Informed consent starts from the assumption that, following the provision of appropriate information, and based on his or her expertise, a clinician recommends a course of action to which the individual is asked to consent. Informing patients about the potential risks and consequences of a medical procedure is now considered essential to good practice and psychological preparation for such procedures has been shown to be linked to improved patient outcomes. Within reproductive genetic services, however, the term informed choice has come to be preferred over informed consent. Choosing to have prenatal screening, for example for Down syndrome, is not directly equivalent to consenting to a surgical procedure or even screening for conditions such as breast cancer, although many of the issues are related.

In contrast to informed consent, an informed choice starts from the assumption that, once appropriate information has been provided, the course of action should be chosen by the patient rather than the clinician. In most cases, the only therapeutic intervention on offer following a diagnosis of abnormality via prenatal testing is termination of pregnancy. For this reason, most clinicians accept that prenatal testing choices should reflect the values of the individual woman and her partner. Testing policy and related guidelines reflect this viewpoint and require that information about the testing process should support individual choice by being balanced and non-directive.