Autonomy and a right not to know

Author(s):  
Jørgen Husted
Keyword(s):  
2010 ◽  
pp. 91-113
Author(s):  
Juri Monducci

The law pertaining to personal data has developed in Italy over a thirty-year span that took us from recognition of such data in the case law, in 1975, to its statutory protection, in 2003. This evolution would subsequently come to the point of specifically regulating the processing of genetic data as data revealing an individual's genetic makeup, thereby also revealing the biological future of individuals and their offspring: this information describes an individual at a core level where the deepest, most unchangeable traits are found and can therefore nurture what is nowadays referred to as genetic determinism, which reduces the person to a complex of genetic data and so ignores the whole layer of characteristics that make each of us unique. There is, then, a discriminatory risk inherent in the processing of genetic data, and equally clear are the psychological implications of such processing, so much so that the need has arisen to have rules in place aimed at regulating the biotechnologies and genetics in particular. These rules have given birth to the so-called fourthgeneration rights, inclusive of the right to ones genetic identity and the right not to know ones genetics (although this is something that had been discussed earlier, too), and it is to a discussion of these rights that this essay is devoted.


2000 ◽  
Vol 34 (1_suppl) ◽  
pp. A208-A212 ◽  
Author(s):  
Alan Rosen

Objective To represent a cross-section of current thinking on the ethics of early (primary) prevention in schizophrenia. Method Ethical considerations presented at the First Australian Schizophrenia Prevention Conference, Sydney, March 1999, particularly from the final session on ‘Ethics’, are recorded here together with complementary referenced material. Results Ethical concerns arise in the arenas of research over clinical priorities; screening ethics, including stigma, confidentiality, informed consent and support required through waiting periods; and the ethics of prolonged assessments in the absence of disorder, the right not to know and the possible ethical prematurity or otherwise of screening for schizophrenia. Conclusions There are several legitimate ethical concerns that must be understood and addressed by those undertaking the developing of primary preventive measures in schizophrenia. Such measures must still be regarded as more experimental the further ahead the measures are undertaken from the onset of the disorder. Anticipatory ethical guidelines should be developed to inform such research.


2020 ◽  
Vol 46 (5) ◽  
pp. 300-303 ◽  
Author(s):  
Ben Davies

There is significant controversy over whether patients have a ‘right not to know’ information relevant to their health. Some arguments for limiting such a right appeal to potential burdens on others that a patient’s avoidable ignorance might generate. This paper develops this argument by extending it to cases where refusal of relevant information may generate greater demands on a publicly funded healthcare system. In such cases, patients may have an ‘obligation to know’. However, we cannot infer from the fact that a patient has an obligation to know that she does not also have a right not to know. The right not to know is held against medical professionals at a formal institutional level. We have reason to protect patients’ control over the information that they receive, even if in individual instances patients exercise this control in ways that violate obligations.


2017 ◽  
Vol 9 (1-2) ◽  
pp. 3-18 ◽  
Author(s):  
Roger Brownsword ◽  
Jeff Wale

Abstract Prompted by developments in human genetics, a recurrent bioethical question concerns a person’s ‘right to know’ and ‘right not to know’ about genetic information held that is intrinsically related to or linked to them. In this paper, we will revisit the claimed rights in relation to two particular test cases. One concerns the rights of the 500,000 participants in UK Biobank (UKB) whose biosamples, already having been genotyped, will now be exome sequenced, and the other concerns the rights of pregnant women (and their children) who undergo non-invasive prenatal testing (NIPT)—a simple blood test that can reveal genetic information about both a foetus and its mother. This two-part paper is in four principal sections. First, we sketch the relevant features of our two test cases. Secondly, we consider the significance of recent legal jurisprudence in the UK and Singapore. Thirdly, we consider how, the jurisprudence apart, the claimed rights might be grounded. Fourthly, we consider the limits on the rights. We conclude with some short remarks about the kind of genetically aware society that we might want to be and how far there is still an opportunity meaningfully to debate the claimed rights.


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