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

Jan Domaradzki 1
1 - Department of Social Sciences, Karol Marcinkowski University of Medical Sciences, Poznań, Poland
Ann Agric Environ Med
2015; 22 (1):
ICID: 1141387
Article type: Original article
Introduction and objective. 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.
Summary. 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.
DOI: 10.5604/12321966.1141387
PMID 25780847 - click here to show this article in PubMed

Recommend this article to:


Related articles in IndexCopernicus™
     right not to know [0 related records]
     Genetic Testing [105 related records]
     genetic risk [3 related records]
     ethos of duty [0 related records]
     biological citizenship [0 related records]
     duty to know [0 related records]


Related articles

P Domaradzki, Z Litwińczuk,
Zmiany właściwości fizykochemicznych i sensoryc...
Pod względem wartości odżywczej wołowina jest bardzo cenionym gatunkiem mięsa. W celu uzyskania wysokiej wartości kulinarnej surowiec ten wymaga zabiegów, prowadzących przede wszystkim do wykształcenia pożądanych właściwości sensoryczny...
J Domaradzki,
Family caregivers’ experiences with healthcare s...
ObjectivesDespite a growing interest in the health and psychosocial consequences of caring for a person with Huntington’s disease (pHD), little is still known about family caregivers of such patients in Poland. At the same time, while researchers f...
M Florek, P Domaradzki,
Teorie dotyczące naturalnych procesów kruszenia ...
Spośród różnych właściwości mięsa wpływających na jego jakość, dla konsumenta najważniejsza jest kruchość. W czasie pośmiertnej konwersji mięśni do mięsa zachodzi złożony proces tenderyzacji. Od dawna mechanizm tenderyzacji mięs...