The Information Provided by DNA Tests: An Overview of Issues (in Polish)

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Published: Dec 15, 2014
DOI: https://doi.org/10.13153/diam.42.2014.681
Keywords:
DNA tests genetic exceptionalism privacy confidentiality clinical applicability M. Kroese G. T. Laurie G. J. Annas L. H. Glanz P. A. Roche

Main Article Content

Olga Dryla
Jagiellonian University

Abstract

The steady growth of the number of DNA tests offered results in the discussion on the ethical aspects of these tests becoming increasingly lively and multifaceted. This text provides an overview of selected issues concerning the characteristics, protection and quality of the information acquired as a result of carrying out DNA tests. I discuss the salient points in the debates on the possibility to justify the so-called genetic exceptionalism, and the ways of specifying the scope of the principle of confidentiality that protects the privacy of the information given by the subject. The final part of the article features the discussion on the importance of the possibility to use the information, acquired from these tests, in practice – for making decisions about the introduction of new kinds of tests for the clinical application.

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How to Cite
Dryla, Olga. 2014. “The Information Provided by DNA Tests: An Overview of Issues (in Polish)”. Diametros, no. 42 (December):29-56. https://doi.org/10.13153/diam.42.2014.681.
Issue
No. 42 (2014)
Section
Special Topic - Cross sections of bioethics

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Author Biography

Olga Dryla, Jagiellonian University

Olga Dryla, PhDInstitute of PhilosophyJagiellonian University olga.dryla@uj.edu.pl
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References

AAP [2001] – American Academy of Pediatrics. Committee on Bioethics, Ethical Issues With Genetic Testing in Pediatrics, „Pediatrics” (107/6) 2001, s. 1451–1455.
View in Google Scholar

AMA [1996] – American Medical Association, Opinion 2.138 – Genetic Testing of Children, dostępne na: http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion2138.page.
View in Google Scholar

Annas, Glanz, Roche [1995] – G.J. Annas, L.H. Glanz, P.A. Roche, Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations, „Journal of Law, Medicine & Ethics” (23) 1995, s. 360–366.
View in Google Scholar

ASHG [1995] – American Society of Human Genetics, ASHG/ACMG Report. Point to Con- sider: Ethical. Legal, and Psychological Implications of Genetic Testing in Children and Adolescents, „American Journal of Human Genetics” (57) 1995, s. 1233–1241.
View in Google Scholar

Bradley [2005] – A.N. Bradley, Utility and limitations of genetic testing and information, „Nursing Standard” (20/5) 2005, s. 52–55.
View in Google Scholar

BSHG [2010] – British Society of Human Genetics, Report on the Genetic Testing of Children 2010, dostępne na: http://www.bsgm.org.uk/media/678741/gtoc_booklet_final_ new.pdf.
View in Google Scholar

Burges [2001] – Michael M. Burges, Beyond consent: ethical and social issues in genetic testing, „Nature Reviews. Genetic” (2) 2001, s. 147–151.
View in Google Scholar

Burke et al. [2002] – W. Burke, D. Atkins, M. Gwinn, A. Guttmacher, J. Haddow, J. Lau, G. Palomaki, N. Press, C.S. Richards, L. Wideroff, G.L. Wiesner, Genetic Test Evaluation: Information Needs of Clinicians, Policy Makers, and Public, „American Journal of Epidemiology” (156/4) 2002, s. 331–318.
View in Google Scholar

Burley [1999] – Justine Burley, Bad Genetic Luck and Health Insurance, [w:] J. Burley (ed.), The Genetic Revolution and Human Rights, Oxford University Press, 1999 (Reprinted 2005), s. 54–61.
View in Google Scholar

Burris, Gostin [2007] – Scott Burris, Lawrence O. Gostin, Genetic Screening from a Public Health Perspective, „Public Health Ethics. Theory, Policy, and Practice”, R. Bayer, L.O. Gostin, B. Jennings, B. Steinbock (eds.), Oxford University Press 2007, s. 357–367.
View in Google Scholar

Chyrowicz [2002] – Barbara Chyrowicz, Bioetyka i ryzyko. Argument „równi pochyłej” w dyskusji wokół osiągnięć współczesnej genetyki, Towarzystwo Naukowe KUL, Lublin 2002.
View in Google Scholar

Clarke et al. [2005] – A. Clarke, M. Richards, L. Kerzin-Storrar, J. Halliday, M.A. Young, S.A. Simpson, K. Featherstone, K. Forrest, A. Lucassen, P.J. Morrison, O.W.J. Quarrell, H. Stewart, Genetic professionals’ reports of nondisclosure of genetic risk information within families, „European Journal of Human Genetics” (13) 2005, s. 556–562.
View in Google Scholar

Copelovitch, Kaplan [2006] – L. Copelovitch, B.S. Kaplan, Is genetic testing of healthy presymptomatic children with possible Alport syndrome ethical?, „Pediatr. Nephrol.” (21) 2006, s. 455–456.
View in Google Scholar

Doukas, Berg [2001] – David J. Doukas, Jessica W. Berg, The Family Covenant and Genetic Testing, „The American Journal of Bioethics” (1/3) 2001, s. 2–10.
View in Google Scholar

Dryla [2011] – Olga Dryla, Zasada poufności w genetyce klinicznej, „Principia”, T. LIV–LV, 2011, s. 223–246.
View in Google Scholar

Dryla [2012] – Olga Dryla, Genetyczna diagnostyka preimplantacyjna w świetle „Stanowiska” Komitetu Bioetyki przy Prezydium PAN, „ICF Diametros” (34) 2012, s. 116–135.
View in Google Scholar

Duncan [2004] – R.E. Duncan, Predictive genetic testing in young people: When is it appropriate?, „J. Paediatr. Child Health” (40) 2004, s. 593–595.
View in Google Scholar

Duncan, Delatycki [2006] – Predictive genetic testing in young people for adult-onset conditions: Where is the empirical evidence?, „Clinical Genetics” (69) 2006, s. 8–16.
View in Google Scholar

Ensenauer, Michels, Reinke [2005] – Regina E. Ensenauer, Virginia V. Michels, Shanda S. Reinke, Genetic Testing:Practical, Ethical, and Counseling Considerations, „Mayo Clinic Proceedings” (80/1) 2005, s. 63–73.
View in Google Scholar

Everett [2003] – M. Everett, The social life of genes: privacy, property and the new genetics, „Social Science & Medicine” 56 (2003), s. 53–65.
View in Google Scholar

Gostin [1995] – Lawrence O. Gostin, Genetic Privacy, „Journal of Law, Medicine & Ethics” (23) 1995, s. 320–330.
View in Google Scholar

Green, Botkin [2003] – M.J. Green, J.R. Botkin, “Genetic Exeptionalism” in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests, „Annals of Internal Medi- cine” (138/7) 2003, s. 571–575.
View in Google Scholar

Grosse, Kohury [2006] – S.D. Grosse, M.J. Khoury, What is the clinical utility of genetic testing?, „Genetics in Medicine” (8/7) 2006, s. 448–450.
View in Google Scholar

Harris, Keywood [2001] – J. Harris, K. Keywood, Ignorance, Information and Autonomy, „Theoretical Medicine” (22) 2001, s. 415–436.
View in Google Scholar

Kaas [1997] – Nancy E. Kaas, The Implications of Genetic Testing for Health and Life Insurance, [w:] M. A. Rothstein (ed.), Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, Yale University Press, 1997, ss. 299-317.
View in Google Scholar

Knoppers [1999] – Bartha Maria Knoppers, Who Should have Access to Genetic Information? [w:] J. Burley (ed.), The Genetic Revolution and Human Rights, Oxford University Press, 1999 (Reprinted 2005), s. 39–54.
View in Google Scholar

Kroese et al. [2004] - Mark Kroese, Ron L. Zimmern, Simon Sanderson, Genetic tests and their evaluation: Can we answer the key questions?, „Genetics in Medicine” (6/6) 2004, s. 475–480.
View in Google Scholar

Kroese et al. [2007] – M. Kroese, R.L. Zimmern, P. Farndon, F. Stewart, J. Wittaker, How can genetic tests be evaluated for clinical use? Experience of UK Genetic Testing Network, „European Journal of Human Genetic” 2007, s. 1–5.
View in Google Scholar

Lacroix, Nycum, Godard, Knoppers [2008] – M. Lacroix, G. Nycum, B. Godard, B.M. Knoppers, Should physicians warn patients’ relatives of genetic risks?, „Canadian Medical Association Journal” (178/5) 2008, s. 593–595.
View in Google Scholar

Laurie [1999] - G.T. Laurie, In Defense of Ignorance: Genetic Information and the Right not to Know, „European Journal of Health Law” (6) 1999, s. 119–132.
View in Google Scholar

Lucassen, Parks [2004] – Anneke Lucassen, Michael Parks, Confidentiality and serious harm in genetics – preserving the confidentiality of one patient and preventing harm to relatives, „European Journal of Human Genetics” (12) 2004, s. 93–97.
View in Google Scholar

McCarthy Veatch, LeRoy, Bartels [2003] – P. McCarthy Veatch, B.S. LeRoy, D.M. Bartels, Facilitating the Genetic Counseling Process. A Practice Manual, Springer – Verlag, NY 2003, s. 222–242.
View in Google Scholar

Murray [1997] – Thomas H. Murray, Genetic Exeptionalism and „Future Diaries”: Is Genetic Information Different from Other Medical Information?, [w:] Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, M.A. Rothstein (ed.), Yale University Press 1997, s. 60–77.
View in Google Scholar

NIH-DOE [1997] – National Institutes of Health – Department of Energy: Task Force on Genetic Testing, Promoting Safe and Effective Genetic Testing in United States, dostępne na: http://www.genome.gov/10001733.
View in Google Scholar

Nyrhinen, Leino-Kilpi, Hietala [2004] – T. Nyrhinen, H. Leino-Kilpi, M. Hietala, Ethical issues in the diagnostic genetic testing process, „New Genetics and Society” (23/1) 2004, s. 73–87.
View in Google Scholar

Ossario [2005] – Pilar Ossario, Legal and Ethical Issues in Biotechnology Patenting, [w:] J. Burley, J. Harris (eds.), A Companion to Genethics, Blackwell Publishing 2005, s. 408–420.
View in Google Scholar

Poste [1999] – G. Poste, Privacy and Confidentiality in the Age of Genetic Engineering, „Texas Review of Law & Politics” (4/1) 1999, s. 25–32.
View in Google Scholar

Powers [2005] – Madison Powers, Privacy and Genetics, [w:] A Companion to Genethics, J. Burley, J. Harris (eds.), Blackwell Publ. 2005, s. 364–378.
View in Google Scholar

Przyłuska-Fiszer [2013] – Alicja Przyłuska-Fiszer, Niepełnosprawność jako przedmiot refleksji bioetycznej, rozdz. 3: Spór o zapobieganie niepełnosprawności poprzez poradnictwo genetyczne, Kraków 2013, s. 82–125.
View in Google Scholar

Resnik [2003] – David B. Resnik, Genetic testing and primary care: a new ethics for a new set- ting, „New Genetics and Society” (22/3) 2003, s. 245–256.
View in Google Scholar

Rhodes [1998] – R. Rhodes, Genetic Links, Family Ties, and Social Bonds: Rights and Responsibilities in the Face of Genetic Knowledge, „Journal of Medicine and Philosophy” (23/1) 1998, s. 10–30.
View in Google Scholar

Rhodes [2000] – R. Rhodes, Autonomy, Respect, and Genetic Information Policy: A Reply to Tuija Takala and Matti Häyry, „Journal of Medicine and Philosophy” (25/1) 2000, s. 114–120.
View in Google Scholar

Rhodes [2006] – R. Rhodes, Why Test Children for Adult-Onset Genetic Diseases?, “The Mount Sinai Journal of Medicine” (73) 2006, s. 609–616.
View in Google Scholar

Rothstein [1997a] – Mark A. Rothstein, The Law of Medical and Genetic Privacy in the Work- place, [w:] M.A. Rothstein (ed.), Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, Yale University Press, 1997, s. 281–299.
View in Google Scholar

Rothstein [1997b] – Mark A. Rothstein, Genetic Secrets: A Policy Framework, [w:] M.A. Roth- stein (ed.), Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, Yale University Press, 1997, s. 451–497.
View in Google Scholar

Sanderson et al. [2005] – Simon Sanderson, Ron Zimmern, Mark Kroese, Julian Higgins, Christine Patch, Jon Emery, How can the evaluation of genetic tests be enhanced? Les- sons learned from the ACCE framework and evaluating genetic tests in the United King- dom, „Genetics in Medicine” (7/7) 2005, s. 495–500.
View in Google Scholar

Sankar [2003] – P. Sankar, Genetic Privacy, „Annu. Rev. Med.” (54) 2003, s. 393–407.
View in Google Scholar

Scheuner, Rotter [2006] – M.T. Scheuner, J.I. Rotter, Quantifying the health benefits of genetic tests: A clinical perspective, „Genetics in Medicine” (8/3) 2006, s. 141–142.
View in Google Scholar

Takala [1999] – T. Takala, The Right to Genetic Ignorance Confirmed, „Bioethics” (13, 3/4) 1999, s. 289–293.
View in Google Scholar

Takala [2001] – T. Takala, Genetic Ignorance and Reasonable Paternalism, „Theoretical Medicine” (22) 2001, s. 485–491.
View in Google Scholar

Takala, Häyry [2000] – T. Takala, M. Häyry, Genetic Ignorance, Moral Obligation and Social Duties, „Journal of Medicine and Philosophy” (25/1) 2000, s. 107–113.
View in Google Scholar

Wilson [2005] – J. Wilson, To Know or not to Know? Genetic Ignorance, Autonomy and Paternalism, „Bioethics” (19, 5–6) 2005, s. 493–504.
View in Google Scholar