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

Olga Dryla

About author

Olga Dryla, PhD
Institute of Philosophy
Jagiellonian University
olga.dryla@uj.edu.pl

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.

Full Text:

PDF (In Polish)


References


  1. American Academy of Pediatrics. Committee on Bioethics, Ethical Issues With Genetic Testing in Pediatrics, „Pediatrics” (107/6) 2001, s. 1451–1455.
  2. 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.
  3. 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.
  4. 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.
  5. A.N. Bradley, Utility and limitations of genetic testing and information, „Nursing Standard” (20/5) 2005, s. 52–55.
  6. 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.
  7. Michael M. Burges, Beyond consent: ethical and social issues in genetic testing, „Nature Reviews. Genetic” (2) 2001, s. 147–151.
  8. 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.
  9. 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.
  10. 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.
  11. Barbara Chyrowicz, Bioetyka i ryzyko. Argument „równi pochyłej” w dyskusji wokół osiągnięć współczesnej genetyki, Towarzystwo Naukowe KUL, Lublin 2002.
  12. 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.
  13. L. Copelovitch, B.S. Kaplan, Is genetic testing of healthy presymptomatic children with possible Alport syndrome ethical?, „Pediatr. Nephrol.” (21) 2006, s. 455–456.
  14. David J. Doukas, Jessica W. Berg, The Family Covenant and Genetic Testing, „The American Journal of Bioethics” (1/3) 2001, s. 2–10.
  15. Olga Dryla, Zasada poufności w genetyce klinicznej, „Principia”, T. LIV–LV, 2011, s. 223–246.
  16. Olga Dryla, Genetyczna diagnostyka preimplantacyjna w świetle „Stanowiska” Komitetu Bioetyki przy Prezydium PAN, „ICF Diametros” (34) 2012, s. 116–135.
  17. R.E. Duncan, Predictive genetic testing in young people: When is it appropriate?, „J. Paediatr. Child Health” (40) 2004, s. 593–595.
  18. Predictive genetic testing in young people for adult-onset conditions: Where is the empirical evidence?, „Clinical Genetics” (69) 2006, s. 8–16.
  19. 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.
  20. M. Everett, The social life of genes: privacy, property and the new genetics, „Social Science & Medicine” 56 (2003), s. 53–65.
  21. Lawrence O. Gostin, Genetic Privacy, „Journal of Law, Medicine & Ethics” (23) 1995, s. 320–330.
  22. 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.
  23. S.D. Grosse, M.J. Khoury, What is the clinical utility of genetic testing?, „Genetics in Medicine” (8/7) 2006, s. 448–450.
  24. J. Harris, K. Keywood, Ignorance, Information and Autonomy, „Theoretical Medicine” (22) 2001, s. 415–436.
  25. 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.
  26. 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.
  27. 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.
  28. 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.
  29. 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.
  30. 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.
  31. 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.
  32. P. McCarthy Veatch, B.S. LeRoy, D.M. Bartels, Facilitating the Genetic Counseling Process. A Practice Manual, Springer – Verlag, NY 2003, s. 222–242.
  33. 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.
  34. 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.
  35. 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.
  36. 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.
  37. G. Poste, Privacy and Confidentiality in the Age of Genetic Engineering, „Texas Review of Law & Politics” (4/1) 1999, s. 25–32.
  38. Madison Powers, Privacy and Genetics, [w:] A Companion to Genethics, J. Burley, J. Harris (eds.), Blackwell Publ. 2005, s. 364–378.
  39. Alicja Przyłuska-Fiszer, Niepełnosprawność jako przedmiot refleksji bioetycznej, rozdz. 3: Spór o zapobieganie niepełnosprawności poprzez poradnictwo genetyczne, Kraków 2013, s. 82–125.
  40. 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.
  41. 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.
  42. 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.
  43. R. Rhodes, Why Test Children for Adult-Onset Genetic Diseases?, “The Mount Sinai Journal of Medicine” (73) 2006, s. 609–616.
  44. 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.
  45. 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.
  46. 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.
  47. P. Sankar, Genetic Privacy, „Annu. Rev. Med.” (54) 2003, s. 393–407.
  48. 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.
  49. T. Takala, The Right to Genetic Ignorance Confirmed, „Bioethics” (13, 3/4) 1999, s. 289–293.
  50. T. Takala, Genetic Ignorance and Reasonable Paternalism, „Theoretical Medicine” (22) 2001, s. 485–491.
  51. T. Takala, M. Häyry, Genetic Ignorance, Moral Obligation and Social Duties, „Journal of Medicine and Philosophy” (25/1) 2000, s. 107–113.
  52. J. Wilson, To Know or not to Know? Genetic Ignorance, Autonomy and Paternalism, „Bioethics” (19, 5–6) 2005, s. 493–504.

DOI:

http://dx.doi.org/10.13153/diam.42.2014.681

Article links:

Default URL: http://www.diametros.iphils.uj.edu.pl/index.php/diametros/article/view/681
Polish abstract URL: http://www.diametros.iphils.uj.edu.pl/index.php/diametros/article/view/681/pl
English abstract URL: http://www.diametros.iphils.uj.edu.pl/index.php/diametros/article/view/681/en

Share:






All works are licensed under a Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) License.