scholarly journals The Right to Know and the Right Not to Know Revisited: Part One

2017 ◽  
Vol 9 (1-2) ◽  
pp. 3-18 ◽  
Author(s):  
Roger Brownsword ◽  
Jeff Wale
Keyword(s):  
Genetic Information ◽  
Human Genetics ◽  
Prenatal Testing ◽  
Test Cases ◽  
Right To Know ◽  
Non Invasive ◽  
The Right To Know ◽  
Right Not To Know ◽  
The Uk ◽  
The Right

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.

Autonomy, the Right Not to Know, and the Right to Know Personal Research Results: What Rights are There, and Who Should Decide about Exceptions?

2014 ◽  
Vol 42 (1) ◽  
pp. 28-37 ◽  
Author(s):  
Gert Helgesson
Keyword(s):  
Type I Diabetes ◽  
Personal Data ◽  
Personal Health Information ◽  
Type I ◽  
Right To Know ◽  
Ethical Guidelines ◽  
The Right To Know ◽  
Screening Study ◽  
Right Not To Know ◽  
The Right

Bioethicists have for quite some time discussed the right to know and the right not to know personal health information, such as genetic information acquired in health care and incidental health-related findings in research. Several international ethical guidelines explicitly defend these rights.My own interest in these matters stems from my participation in ethics-related research tied to a longitudinal screening study on Type I diabetes involving young children. A few of the participating parents (about 2 percent) did not want to be informed if the study revealed their child had a high risk of developing diabetes. This response was troublesome, not least since the information would concern the child's and not the parents’ health. Our inclination was that there cannot be a right not to know that should be granted without qualifications. Furthermore, other contextual factors, e.g., that parents experienced pressure to participate and felt concern about some of the personal data handled in the study, gave reason to question whether autonomous decisions were made regarding participation. The autonomy of their expressed desire not to know was therefore questionable.

The Right Not to Know and the Duty to Tell: The Case of Relatives

2014 ◽  
Vol 42 (1) ◽  
pp. 38-52 ◽  
Author(s):  
Niklas Juth
Keyword(s):  
Genetic Testing ◽  
Genetic Predisposition ◽  
Genetic Information ◽  
Preventive Measures ◽  
Right To Know ◽  
Potential Conflict ◽  
Conflict Of Interests ◽  
Right Not To Know ◽  
The Right ◽  
Future Plans

This text is about obtaining and sharing genetic information when there is a potential conflict of interests between patients and their families and relatives. The patient or, in this text, the “index-person,” is someone who is considering obtaining or already has obtained genetic information about herself through genetic testing.The index-person can have several reasons to take an interest in obtaining her genetic information. She may want to know if she has a genetic predisposition for a disorder in order to take measures for preventing its development. Even if there are no preventive measures, as is the case with Huntington's disease, for instance, she may still want to know whether she has the mutation, in order to adjust her future plans. These interests that an individual may have in obtaining genetic information have been used to argue in favour of a right to know.

Which Rights for Which Subjects? Genetic Confidentiality and Privacy in the Post-Genomic Era

2009 ◽  
pp. 454-473
Author(s):  
Antoinette Rouvroy
Keyword(s):  
Genetic Information ◽  
Human Genetics ◽  
Right To Know ◽  
Genetic Tests ◽  
Legal Subject ◽  
Usual Assumption ◽  
Right Not To Know ◽  
The Individual ◽  
Confidentiality And Privacy

The aim of the present chapter is to elucidate the paradoxical position of the individual legal subject in the context of human genetics. It first discusses the assumed individual “right to know” and “right not to know” about genetic susceptibilities, predispositions and risks when genetic tests exist, and assess the usual assumption according to which more information necessarily increases liberty and enhances autonomy. A second section is dedicated to the issues of confidentiality, intra-familial disclosure and familial management of genetic information. The idea is suggested that those issues challenge the fundamental liberal unit of the individual traditionally understood as a stable, unitary, embodied entity.

Which Rights for Which Subjects?

Cyber Crime ◽  
2013 ◽  
pp. 1583-1602
Author(s):  
Antoinette Rouvroy
Keyword(s):  
Genetic Information ◽  
Human Genetics ◽  
Right To Know ◽  
Genetic Tests ◽  
Legal Subject ◽  
Usual Assumption ◽  
Right Not To Know ◽  
The Individual

The aim of the present chapter is to elucidate the paradoxical position of the individual legal subject in the context of human genetics. It first discusses the assumed individual “right to know” and “right not to know” about genetic susceptibilities, predispositions and risks when genetic tests exist, and assess the usual assumption according to which more information necessarily increases liberty and enhances autonomy. A second section is dedicated to the issues of confidentiality, intra-familial disclosure and familial management of genetic information. The idea is suggested that those issues challenge the fundamental liberal unit of the individual traditionally understood as a stable, unitary, embodied entity.

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