Is genetic information family property? Expanding on the argument of confidentiality breach and duty to inform persons at risk

Authors

  • Yordanis Enríquez Canto Author Prof. Yordanis Enríquez Canto Asociado de Ética, Deontología y Bioética Jefe del departamento de Investigación Facultad de Ciencias de la Salud Universidad Católica Sedes Sapientiae
  • Barbara Osimani Author Research Fellow University of Camerino School of Pharmacology and Health Products

Keywords:

genetic information, familiarity, duty to inform, breach of confidentiality, privacy rights, genetic counseling, harm, genetic risk

Abstract

A current trend in bioethics considers genetic information as family property. This paper uses a logical approach to critically examine Matthew Liao’s proposal on the familial nature of genetic information as grounds for the duty to share it with relatives and for breach of confidentiality by the geneticist. The authors expand on the topic by examining the relationship between the arguments of probability and the familial nature of genetic information, as well as the concept of harm in the context of genetic risk. Lastly, they examine the concept of harm in relation to the type of situations w the potential recipient of the information is not the person directly affected by the risk.

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Author Biographies

Yordanis Enríquez Canto, Prof. Yordanis Enríquez Canto Asociado de Ética, Deontología y Bioética Jefe del departamento de Investigación Facultad de Ciencias de la Salud Universidad Católica Sedes Sapientiae

Tit. académicos:

2009 Doctorado de Investigación en Bioética (PhD) Roma Universidad Católica del Sacro Cuore – Facultad de Medicina y Cirugía

2001 Licenciado en Pedagogía, especialidad Biología La Habana - Universidad de La Habana – Facultad de Ciencias Naturales

Sector profesional e intereses académicos:

Bioeticista. Experto en el área de la consulencia genética, biojurídica y discapacidad.

Publicaciones:

Enríquez Canto Y. “Approccio localistico e bioetica deliberativa. Limiti e interrogativi", in Medicina e Morale, Rivista Internazionale di Bioetica, 1 (2014) pp. 95-115

Enríquez Canto Y. "At the root of wrongful life: the link between suffering and "harmed conditions", in Studia Universitatis Babes-Bolyai-Bioethica 2 (2013): 39-57

Enríquez Canto Y. “Informazione Genetica, Danno da Procreazione e Disabilità. Aggiornamenti Concettuali sull’Eugenetica”, in MEDIC Vol 20, 2 (2012) pp. 100-112

Enríquez Canto Y. “Latin American Bioethics as Democratic Dialogue. Critical Considerations”, in STUDIA UBB BIOETHICA, LVII, 1 ( 2012) pp. 9-24

Enríquez Canto Y. “¿Ética vs. Bioética?”, in Chacón N. et al. Dimensión ética de la educación cubana. La Habana: Editorial Pueblo y Educación; 2002 pp. 7-11

 

Barbara Osimani, Research Fellow University of Camerino School of Pharmacology and Health Products

Present and previous appointments

11/12 – present: University of Camerino – School of Pharmacology: Research Fellow.

10/08 – 10/12 Catholic University of Milan – Centre of Bioethics: Senior Researcher.

10/02 – 05/07 University of Lugano – Institute of Communication and Health: Research Assistant.

 

Participation to Research Projects

November 2012 – November 2014: Epistemic Asymmetries in Benefit vs. Risk Assessment of Pharmaceuticals (Phase III trials). Intramural Project at the University of Camerino. PI: Prof. Fiorenzo Mignini

October 2013 – October 2015: Intellectual humility and cultural diversity in philosophy; PI: Stephen Stich: http://xphi-europe.org/intellectualhumility/

October 2008 – September 2012: Gen-Etica (Funded by the Italian Ministry of Research: prot. 2688); PI: Prof. Adriano Pessina http://centridiateneo.unicatt.it/bioetica-progetto-gen-etica-presentazione

May 2002 – October 2006 Research project: “JUSA - Antibiotic resistance” Funded by the Swiss National Science Foundation (SNF 49): PI: Prof. Peter Schulz

http://www.nrp49.ch/upload/docs/Dokumente/NRP_49_Report_WEB%20mit%20Links.pdf

October 2003 – October 2004: “Diabetes” Funded by the Tessin Association of Pharmacists. PI: Prof. Peter Schulz

Selected publications

  1. Osimani B. (Forthcoming a) Safety vs. efficacy assessment of pharmaceuticals: epistemological rationales and methods. Preventive Medicine.

  2. Osimani B. (Forthcoming b) Code or Cause? Genetic Information as influence. Kybernetes, Special Issue on Information: Space, Time, and Identity (DTMD 2013).

  3. Osimani B. (2013a) Hunting side effects and explaining them: should we reverse evidence hierarchies upside down? Topoi (Special Issue: Evidence and Causality in the Sciences) October.

  4. Osimani B. (2013b) Until RCT-proven? On the asymmetry of evidence requirements for risk assessment. Journal of Evaluation in Clinical Practice, 19: 454–462

  5. Osimani B. (2013c) The precautionary principle in the pharmaceutical domain: a philosophical enquiry into probabilisit reasoning and risk aversion. Health, Risk and Society, 15 (2): 123-143.

  6. Osimani B. (2013d) An epistemic analysis of the precautionary principle. Dilemata: International Journal of Applied Ethics, 11: 149-167.

  7. Osimani B. (2012a) Il contributo delle teorie filosofiche della causalità al dibattito sull’informazione genetica. MEDIC, Special issue: Genetic Information. Epistemological, Anthropological and Ethical Issues, 20 (2): 19-46.

  8. Osimani, B. (2012b). Genetic Information. Epistemological, Anthropological and Ethical Issues. MEDIC, Methodology and Innovation for Clinical Innovation (editorial), 20 (2): 10-18.

  9. Osimani B. (2012c) Risk Information Processing and Rational Ignoring in the Health Context. Journal of Socio-Economics 41: 169-179. DOI information: 10.1016/j.socec.2011.10.009

  10. Osimani B. (2011a) Per una formalizzazione bayesiana del principio di precauzione. In: E. Pariotti, G. Guerra, M. Piccinni, D. Ruggiu. “Regolamentazione, forme di responsabilità e nanotecnologie” Dipartimento di Diritto comparato dell’Università di Padova – CIGA, Il Mulino.

  11. Osimani B. (2011b) Is the precautionary principle risk aversive? An enquiry in the domain of pharmaceutical decisions. Studia Universitatis Babes-Bolyai – Bioethica, LVI, 2: 57-70.

  12. Osimani B. (2010) Pharmaceutical risk communication: sources of uncertainty and legal tools of uncertainty management. Health Risk and Society, October, Volume 12 Issue 5: 453-469.

  13. Osimani B. (2009) Modus tollens probabilized: deductive and inductive methods in medical diagnosis. MEDIC, Methodology and Education for Clinical Innovation, vol. 17 (1-2): 43-59.

  14. Osimani, B. (2008) “Health in the DNA? Biology: the Logos of Life. Interview with Gregory Katz”. ParadoXa, 4 (oct.-dic).

  15. Osimani B. (2007) “The epistemic nature of package leaflet information: A contribution to the legal debate on the role of package leaflets in therapeutic consent”. MEDIC Special Issue: Dicember 2007/ April 2008: 72-90.

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Published

2015-06-09

How to Cite

Enríquez Canto, Y., & Osimani, B. (2015). Is genetic information family property? Expanding on the argument of confidentiality breach and duty to inform persons at risk. Persona Y Bioética, 19(1). Retrieved from https://personaybioetica.unisabana.edu.co/index.php/personaybioetica/article/view/4501

Issue

Vol. 19 No. 1 (2015)

Section

Articles

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