In Search of an Institutional Paradigm for Genetic Technology---An Analysis of Genetic Therapy and the Doctor-Patient Relationship (III)

While the advancement of medical technology has greatly increased the healing power, it also fundamentally changes the nature of medical care and the doctor-patient relationship. Health care decisionmaking nowadays often involves not only medical evaluations, but also moral judgement and choice of life style. In the United States, patient autonomy has become the dominant principle in governing doctor-patient relationship over the past few decades. Will or should the principle of patient autonomy keeps being the primary paradigm in the era of genetic medicine? The therapeutic effects of genetic medicine affect not only patients themselves, but also their family members, even extend to next generation. What challenges does genetic medicine bring about to the doctor-patient relationship and how should the law of informed consent respond to them? In search for answers to the above-mentioned questions, this research project first proposed a "family paternalism" model to describe the current doctor-patient relationship in Taiwan. Patients' family members have long been playing a key role in medical decisionmaking as well as bedside caretaking. Such family-oriented doctor patient relationship represents an Asian ideology of "group right" and "relational autonomy," which is distinctive from the Western ideology of "individual right" and "personal autonomy." After examining the latest developments of genetic therapy and exploring its impact on the doctor-patient relationship, the core task of this year turns to answer a specific question: who has the right or duty to know patients’ genetic information. I argued that given both the status quo of family paternalism in Taiwan and the inherent characteristics of genetic information, patient’s family members might have an independent right to know certain genetic information of patients, which in turn might result in a patient’s “duty to know”. In what circumstances, a patient’s “right to know” would transform into a “duty to know”, and how will that affect conventional doctor-patient relationship? Understanding the virtue and limitation of informed consent, the project in the third year will try to propose an integrated “physician-patient-family” decisionmaking model, in which interests of family members will also an important consideration for clinical decision, to encounter the various new challenges of genetic medicine.

Project ID:PA9304-0104
External Project ID:NSC93-3112-H182-001