Warning Patients’ Relatives of Genetic Disorders

Abstract

This article aims to publicize a research report that discusses exception to a duty of confidentiality relating to information about patients’ genetic disorders. As a general rule, this information should not be disclosed so as to protect their privacy and prevent them from being stigmatized, or it is disclosed only with their consent. However, as their genetic information is inherently linked to their biologically related relatives, this information can indicate the risk that these relatives may also have genetic disorders. On one hand, warning their relatives of such risk could benefit these relatives, especially when there are measures available for preventing or alleviating the symptoms of genetic disorders. On the other hand, such warnings may not only violate their privacy, but also have negative consequences for their relatives, particularly when these relatives do not wish to know or do not have the means to tackle those disorders. This raises questions about whether such warnings should occur in the absence of patient consent, under what conditions such warnings should take place, and whether the law should have a role on this matter. The key research question of this report is therefore how the regulations on warning patients’ relatives of genetic disorders should be introduced in Thailand.

This article presents most of this research report by selecting topics that the author deems useful for a broad readership and applicable in practice. It is divided into three parts. The first part explains the considerations that are commonly used to decide whether to warn patients’ relatives of genetic disorders.  The second part presents legal regulations on this matter in four countries: the United States, the United Kingdom, Australia, and France. The final part outlines the proposals of this research report by describing the way in which the appropriate criteria on this matter should be established in Thailand.

The final part of this article explains that, in Thailand, maintaining the relationship between doctors and patients should be prioritized. Accordingly, the regulations on this matter should be grounded in the concept of respect for patients by ways of allowing them to decide whether to warn their relatives of genetic disorders. Nonetheless, there is an exception: such warnings may occur without patients' consent only when the benefits to patients’ relatives outweigh the importance of that concept. Based on this fundamental idea, it is proposed that, in Thailand, regulations should impose three forms of legal duty. The first one is the duty to inform patients about the possibility of such warnings before they undergo genetic testing. The second one is the duty to assist them in warning their relatives, particularly when the duty to warn their relatives is not imposed by law but such warnings are beneficial to their relatives. The last one is the duty to warn their relatives of their genetic disorders. The latter duty is imposed only when the benefits that such warnings bring to their relatives are so real and substantial that those benefits can outweigh the negative consequences thereof.