Patient rights, risk, and responsibilities in the genetic era – a right to know, a right not to know, or a duty to know?

Department of Social Sciences, Karol Marcinkowski University of Medical Sciences, Poznań, Poland
Ann Agric Environ Med 2015;22(1):156–162
[b]Introduction and objective[/b]. As genetics tests ordered by physicians have implications not only for patients but also their relatives, they create a bioethical dilemma for both clinicians and patients. Especially when a patient is reluctant to undergo the test, know the genetic risk, and share such information with others. While international biomedical law recognises the right not to know one’s genetic status, it has been criticised for many reasons. This paper outlines the arguments for and against the right not to know about genetic risk.

Abbreviated description of the state of knowledge:
Both medicine and bioethics acknowledge that information about genetic risk affects not only the individual but also other family members. Consequently, many argue that such information is not a private matter and should be regarded not as a right but as an obligation, or even a duty. Thus, it is emphasized that one’s right not to know is strictly related to the duty to inform others about any genetic risk. Yet others believe that constant proliferation of genetic testing and moralization of health issues poses a serious threat to patient rights and creates new opportunities for social surveillance and control. In both cases there can be observed an increasing ‘bioethecization’ of genetic discourse.

The paper suggests that the developments in genetics result in the emergence of new molecular ethics which stress that individuals have a moral and political duty to undergo the test, know the risk, and disclose that information to others. Consequently, it may transform the right to know into a duty and poses the question whether in the genetic context individuals should have the right to remain ignorant. Finally, the paper argues that genetic literacy becomes a source of biological citizenship.

Jan Domaradzki   
Department of Social Sciences, Karol Marcinkowski University of Medical Sciences, Poznań, Poland
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