RESPECT FOR CONFIDENTIALITY IN GENETIC TESTING: RIGHT OR BURDEN?

Title:

Authors:

Roxana POSTOLICA, Valeriu CHIRICA, Lucian NEGURA, Doina AZOICAI, Cristina GAVRILOVICI

Abstract:

In Romania, approximately 78000 individuals are diagnosed with cancer, as per the latest review of the National Cancer Research Institute – GLOBOCAN 2012. While in 5-10% of these patients the tumors are due to genetic inclinations, it means that approximately 3900-7800 of the total annual cases come from families with genetic exposure to cancer. These patients could benefit from oncogenetic testing and counseling. The history of oncogenetics in Romania is very recent, due to the fact that a few years ago, there was no information whatsoever about mutations, polymorphisms or unclassified gene sequencing. This study includes analysis of a family with a family history of colorectal cancer in terms of confidentiality of genetic information and ethical principles. Genetic information, because it is both individual and familial, will always generate ethical conflicts between the duty of maintaining the confidentiality of information and the duty of warn the other family members who are directly involved. The decision to violate the rule of confidentiality is difficult and raises ethical dilemmas. The consequences of violating confidentiality by means of informing a biological relative with regards to the genetic risks must be compared to the benefits of disclosing information by taking medication or by altering one’s lifestyle in order to prevent or to improve the condition. Thus, professional genetic counselors should make an effort to talk the patient into disclosing information for the others’ sake, and the implicit agreement should be replaced with the explicit agreement, based on the ethical responsibility of each individual.

Keywords:

confidentiality, genetic information, ethical responsibility, disclosing information, family history of cancer

Pages:

77-87

Language:

English

How to cite:

Postolica, R., Chirica, V., Negura, L., Azoicai, D., Gavrilovici, C. (2015). Respect for Confidentiality in Genetic Testing: Right or Burden? Social Research Reports, 27, 77-87