Primary Care Clinicians and the Dilemmas of Genetic Testing

Part 5: The Process of Facilitating Truly Informed Consent

The popular conception of informed consent has rested on a model of patient-physician interaction during which patients ask for, and physicians offer professional recommendations, to which patients then usually consent. Though in the past, informed consent has often been a brief, pro forma “event,” collaborative decision-making has recently been gaining ground as an appropriate model for most clinical decisions. Because the risks and benefits of genetic testing are complicated and their evaluation so contingent upon the perspective of the particular patient, the Task Force on Genetic Testing has called for what has been referred to as an expanded informed consent process or an educated consent process.¹⁸ The point is that there are few cases where clinicians can recommend with confidence that a given patient should or should not have a particular genetic test. This is a shared decision, based on a discussion of the individual patient’s values and coping styles, as much as it is based on a patient’s medical status.

The difficulty, of course, is that conducting an expanded informed consent is a time-intensive process, and the current structure of health care delivery does not encourage clinicians to spend more time with patients. Despite these barriers, clinicians are finding creative ways of delivering the appropriate genetic services by rethinking their own roles in informed consent, utilizing multiple visits and discussion aids, involving genetic counselors and other health care personnel, and using information technologies.¹⁹ Hopefully, we will also see changes in the structure of health care delivery that address the need for these services and make them easier to deliver.

Next: Conclusion >>
Or: Download Complete Article >>