Conceptual Quandaries about Genetic Data — A Comparative Perspective

Krajewska, Atina

doi:10.1163/157180909x400204

Cited by 8 publications

(7 citation statements)

References 3 publications

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“…This reconceptualiza- tion is important not only for the sake of theoretical clarity and to illuminate the full penumbra of interests in play; it serves to inform our policy, professional and legal responses to arguments about the need to recognize, and give effect to a right not to know. 4 Only by revealing the essential nature of what is at stake can we hope to turn any putative right into a reality.…”

Section: Introductionmentioning

confidence: 99%

Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications

Laurie¹

2014

J. Law. Med. Ethics

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This article argues for the importance of conceptual clarity in the debate about the so-called right not to know. This is vital both at the theoretical and the practical level. It is suggested that, unlike many formulations and attempts to give effect to this right, what is at stake is not merely an aspect of personal autonomy and therefore cannot and should not be reduced only to a question of individual choice. Rather, it is argued that the core interests that can be protected by the right not to know are better conceived of as privacy interests rather than autonomy interests. This not only helps us to understand what is in play but also informs regulatory, professional, and legal responses to handling information and taking decisions about whether or not to disclose information to persons about themselves. The practical implications of this conceptualization are explored in the context of feedback policies in health-related research.

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Section: Introductionmentioning

confidence: 99%

Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications

Laurie¹

2014

J. Law. Med. Ethics

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“…Another study concluded that the definitions contained in guidelines produced by professional and advisory bodies and international organisations were very inclusive and reflected a broad understanding of genetic data (Krajewska 2009).…”

Section: Introductionmentioning

confidence: 99%

Definitions of genetic testing in European legal documents

et al. 2012

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The definition of "genetic testing" is not a simple matter, and the term is often used with different meanings. The purpose of this work was the collection and analysis of European (and other) legislation and policy instruments regarding genetic testing, to scrutinise the definitions of genetic testing therewith contained the following: 60 legal documents were identified and examined-55 national and five international ones. Documents were analysed for the type (context) of testing and the material tested and compared by legal fields (privacy and confidentiality, data protection, biobanks, insurance and labour law, forensic medicine); some instruments are very complex and deal with various legal fields at the same time. There was no standard for the definitions used, and different approaches were identified (from wide general, to some very specific and technically based). Often, legal documents did not contain any definitions, and many did not distinguish between genetic testing and genetic information. Genetic testing was more often defined in non-binding legal J Community Genet (2012) 3:125-141 DOI 10.1007 documents than in binding ones. Definitions are core elements of legal documents, and their accuracy and harmonisation (particularly within a particular legal field) is critical, not to compromise their enforcement. We believe to have gathered now the evidence for adopting the much needed differentiation between (a) "clinical genetics testing", (b) "genetics laboratory-based genetic testing" and (c) "genetic information", as proposed before.

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“…7 Thus, genetics and genomics appear not to have fulfilled many of their promises. I discuss this problem in legal terms in: Krajewska (2009a). 8 Of course, this is not to say that life sciences play no role in our every day life.…”

Section: Introductionmentioning

confidence: 99%

“…These difficulties translate into major conceptual quandaries about the regulation of the use of DNA and biological data. 8 I have analysed this problem in: Krajewska (2009b). New biotechnological devices and genetic diagnostic tools have been extensively used in medicine for years.…”

Section: Introductionmentioning

confidence: 99%