8. Genetic Data and the Law

Keyword(s):  
2019 ◽  
Vol 6 (1) ◽  
pp. 1-36 ◽  
Author(s):  
Ellen Wright Clayton ◽  
Barbara J Evans ◽  
James W Hazel ◽  
Mark A Rothstein

Abstract Recent advances in technology have significantly improved the accuracy of genetic testing and analysis, and substantially reduced its cost, resulting in a dramatic increase in the amount of genetic information generated, analysed, shared, and stored by diverse individuals and entities. Given the diversity of actors and their interests, coupled with the wide variety of ways genetic data are held, it has been difficult to develop broadly applicable legal principles for genetic privacy. This article examines the current landscape of genetic privacy to identify the roles that the law does or should play, with a focus on federal statutes and regulations, including the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). After considering the many contexts in which issues of genetic privacy arise, the article concludes that few, if any, applicable legal doctrines or enactments provide adequate protection or meaningful control to individuals over disclosures that may affect them. The article describes why it may be time to shift attention from attempting to control access to genetic information to considering the more challenging question of how these data can be used and under what conditions, explicitly addressing trade-offs between individual and social goods in numerous applications.


Author(s):  
Y. V. Kapranov

The diachronic interpretation of Indo-European *hṷekṷ- / *heuk- “eye, to see”, Altaic *uka- “to notice, to understand” and Afro-Asiatic *Hwq- “to know”, originating from Nostratic *HuḲa “eye, to see”, allowed to establish both divergent and convergent types of linguistic relationship among them, for which the close (Indo-European, Altaic, Afro-Asiatic) and remote / distant (Indo-European / Afro-Asiatic and Altaic) types of language relationship have been established, depending on the action of the main phonomorphological and semantic regularities.The degree of manifestation of phonomorphological laws indicates a close type of language relationship among Indo-European, Altaic and Afro-Asiatic language families. They are: 1) the law on the three-letter / three-phonemic root structure of an archetype (according to E. Benvenist), which corresponds to the law on the consonant root (according to A G. Belova): it helped to fix three phonemes in Indo-European *hṷekṷ- / *heuk-, Altaic *uka- and Afro-Asiatic *Hwq-, as well as to trace the reflexes of this structure in the genetic data material of these language families; 2) the law of the mora is fixed in the Indo-European *hṷekṷ- / *heuk-, Altaic *uka- and Afro-Asiatic *Hwq-, the forms of which correspond to a monosyllable structure, and mono- and multisyllable structures have been observed in the genetic data material; 3) the process of spirantisation consists in weakening the consonant phoneme /q/, i.e. the reflection /q/ into /k/ and /x/; 4) the process of “pharyngisation” can be traced at the end of monosyllabic words, where it could occur by analogy with those forms of the word where the consonant was intervocal; 5) the law on the pronunciation of short vowel phonemes /a/ and /u/, where such features are represented: 1) the degree of solution of the oral cavity; 2) hardness / softness (low tonality / high tonality); 3) absence or presence of labilisation; 6) the law of prosody, which consists in the realisation of stress in accordance with various languages; 7) the law of an open syllable.The degree of phonomorphological manifestations indicates a remote / distant form of language relationship between Indo-European / Afro-Asiatic and Altaic language families, where one of the provisions of the phonetic prohibitions of Jucquо, i.e. when the initial and final laryngals are not allowed, is traced in the Indo-European *hṷekṷ- / *heuk- and Afro-Asiatic *Hwq-.The degree of manifestation of semantic laws indicates a close type of language relationship among Indo-European, Altaic and Afro-Asiatic language families, where 2 lexico-semantic variants (LSV) were fixed: 1) somatism; 2) action. If in the Indo-European *hṷekṷ- / *heuk- “eye, to see” 2 LSVs are fixed: 1) somatism; 2) action, but in the Altaic *uka- “to notice, to understand”, including Turkic *uk(ā)- “to raise, to listen” and Mongolian *uk- “to notice”, as well as the Afro-Asiatic *Hwq- “to know” – only 1 LSV – 2) action.


2015 ◽  
Vol 20 (3) ◽  
pp. 72-84 ◽  
Author(s):  
Paula Leslie ◽  
Mary Casper

“My patient refuses thickened liquids, should I discharge them from my caseload?” A version of this question appears at least weekly on the American Speech-Language-Hearing Association's Community pages. People talk of respecting the patient's right to be non-compliant with speech-language pathology recommendations. We challenge use of the word “respect” and calling a patient “non-compliant” in the same sentence: does use of the latter term preclude the former? In this article we will share our reflections on why we are interested in these so called “ethical challenges” from a personal case level to what our professional duty requires of us. Our proposal is that the problems that we encounter are less to do with ethical or moral puzzles and usually due to inadequate communication. We will outline resources that clinicians may use to support their work from what seems to be a straightforward case to those that are mired in complexity. And we will tackle fears and facts regarding litigation and the law.


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