Abstract
If genetic services are more and more accessible, what moral dilemmas will be confronted regarding decisions of pregnancy? How will it affect the interactions among physicians and patients? In Taiwan, prenatal genetic testing has been conducted for years. As one of the earliest applications of genetic technologies, utilization of prenatal genetic testing is contributed to the observation and analysis of impacts. This study was to explore and compare the perspectives of persons with a family history of genetic disease as well as those of health professionals working for prenatal genetic testing with regard to genetic information, informed consent and results disclosure.
Data were collected by the in-depth interviews. Informants were asked to express their experience and subjective feelings regarding genetic testing.
Findings: (1) Genetic information: Shortage of regular in-service education programs and materials of genetic testing, and difficulties of communication with foreign brides were reported by the health professionals. On the other hand, families with a genetic disease suggest that genetic information should be included in our education systems. (2) Informed consent: Based on the concerns of negligence, agencies of prenatal genetic testing implement the consent form and the dissent form to protect them. Due to the lack of effective communication, there is no mutual trust among patients and physicians. Patients' families give a doubt about whom do physicians protect or serve? (3) Results disclosure: According to the rule of ”no news is good news”, agencies of prenatal genetic testing would not disclose results of genetic testing routinely unless abnormal findings were indicated. Be a mother or family, ”to say or not to say” becomes a tough decision. Furthermore, being a family of patients having genetic disease, they were usually confused about the lines of privacy in terms of genetic information. Suggestions are included in the end.
Data were collected by the in-depth interviews. Informants were asked to express their experience and subjective feelings regarding genetic testing.
Findings: (1) Genetic information: Shortage of regular in-service education programs and materials of genetic testing, and difficulties of communication with foreign brides were reported by the health professionals. On the other hand, families with a genetic disease suggest that genetic information should be included in our education systems. (2) Informed consent: Based on the concerns of negligence, agencies of prenatal genetic testing implement the consent form and the dissent form to protect them. Due to the lack of effective communication, there is no mutual trust among patients and physicians. Patients' families give a doubt about whom do physicians protect or serve? (3) Results disclosure: According to the rule of ”no news is good news”, agencies of prenatal genetic testing would not disclose results of genetic testing routinely unless abnormal findings were indicated. Be a mother or family, ”to say or not to say” becomes a tough decision. Furthermore, being a family of patients having genetic disease, they were usually confused about the lines of privacy in terms of genetic information. Suggestions are included in the end.
| Translated title of the contribution | Reproduction and Patient-professional Interaction in the Time of Geneticization |
|---|---|
| Original language | Chinese (Traditional) |
| Pages (from-to) | 87-111 |
| Journal | Formosan journal of medical humanities |
| Volume | 6 |
| Issue number | 1&2 |
| Publication status | Published - 2005 Sept 1 |