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Towards a Genetic Registry Office?

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Biotech Innovations and Fundamental Rights

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Abstract

Adopting an empirical and realistic methodology of approach, the paper starts from considering the latest innovations in the field of genetics by choosing three meaningful phenomena, such as the birth of pharmacogenetic cards, the tendency to universalization of DNA databases, the rising of interconnections between different DNA repositories and “cross” access to archives (by police to biobanks and by researchers to forensic databases). Then, the focus is given to the legal issues coming at stake within each phenomenon (with a peculiar attention to privacy, confidentiality, autonomy, to risks of discrimination, genetic surveillance, reductionism, violation of the presumption of innocence…), so far as to show that recent developments in genetics, although different, seem to lead to one common future perspective: the genetic registry office, whose establishment cannot occur without a careful consideration of human rights.

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Notes

  1. 1.

    D. Nelkin - M.S. Lindee, The DNA Mystique. The Gene as a Cultural Icon, Michigan, 1996.

  2. 2.

    K. Conger, Study first to analyze individual’s genome for risk of dozens of diseases, potential responses to treatment, Apr. 29, 2010, at http://med.stanford.edu/ism/2010/april/genome.htmlgt: (Apr. 30, 2011 ).

  3. 3.

    〈http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(10)60452-7/abstract〉 (Apr. 30, 2011).

  4. 4.

    〈http://www.pharmgkb.org/〉 (Apr. 30, 2011).

  5. 5.

    〈http://www.cro.sanita.fvg.it/〉 (Apr. 30, 2011).

  6. 6.

    〈http://www.diatechfarmacogenetica.it/comunicati-stampa/CSDiatech060310 carta identità genetica italiana.pdf〉 (Apr. 30, 2011).

  7. 7.

    A. Jeffreys - V. Wilson - S. Thein, Individual-specific ‘fingerprints’ of human DNA, Nat., Jul. 4–10, 1985, 316 (6023): 76–9.

  8. 8.

    The NDNAD is the broader database in the world: 5,2% of inhabitants have their genetic profiles stored, while in the USA only 0,5% of profiles from population is inside the database.

  9. 9.

    P. Wintour, Blair urges police to exploit growing DNA database, The Guard., Oct. 23, 2006, at http://www.guardian.co.uk/politics/2006/oct/23/ukcrime.immigrationpolicygt: (Apr. 30, 2011).

  10. 10.

    Art. 82 of Criminal Justice and Police Act (CJPA, 2001), modifying section 64 of Police and Criminal Evidence Act (PACE, 1984) about police powers in sampling and taking digital fingerprints.

  11. 11.

    Grand Chamber’s Decision (Dec. 4, 2008) at 〈http://cmiskp.echr.coe.int/tkp197/view.asp?item=1&-portal=hbkm&action=html&highlight=marper&sessionid=42969336&skin=hudoc-en〉 (Apr. 30, 2011).

  12. 12.

    England has responded to Strasbourg condemnation through the enactment of the Statute Crime and Security Act 2010, in force since Apr. 8, 2010. It still provides that DNA profiles of persons suspected but not convicted of offences remain within the system, even if no more indefinitely. However, due to the change in government in May 2010, the Act is not implemented and the Coalition Government has proposed a new Protection of Freedoms Bill to bring the law in England in line with ECtHR.

  13. 13.

    B. Lambert, Giuliani Backs DNA Testing of Newborns for Identification, New York Times, Dec. 17, 1998, at http://www.nytimes.com/1998/12/17/nyregion/giuliani-backs-dna-testing-of-newborns-for-identification.htmlgt: (Apr. 30, 2011 ).

  14. 14.

    〈http://www.uulmca.org/programs/props/prop69.php〉 (Apr. 30, 2011).

  15. 15.

    〈http://www.marchofdimes.com/peristats/tlanding.aspx?reg=99&top=12&lev=0&slev=1〉, 〈http://www.ncsl.org/default.aspx?tabid=14416〉 and 〈http://genes-r-us.uthscsa.edu/resources/newborn/newborn menu.htm〉 (Apr. 30, 2011).

  16. 16.

    American College of Medical Genetics, Newborn Screening: Toward a Uniform Screening Panel and System. Final Report, Mar. 8, 2005.

  17. 17.

    For example, Louisiana has fixed a limit of two weeks for data retention, but in Minnesota, Maine, Michigan, North Carolina, Tennessee, Vermont and California banks can increase their size until to a permanent retention. In Minnesota, a Court of Appeals (24 th August 2010) has rejected the instance by Citizens’ Council on Health Care, an organization defending citizens’ privacy, against permanent retention of genetic data and compulsory genetic screenings on newborn, by claiming it to be unconstitutional in relation to the 4 th Amendment. The Court has stated that no violations of privacy occurred in the case and public interest on health must be prevalent.

  18. 18.

    Health Sector Database Act n. 139/1998, at 〈http://eng.heilbrigdisraduneyti.is/laws-andregulations//nr/659〉 (Apr. 30, 2011).

  19. 19.

    Office of Science Policy and Planning and National Institute of Health, Report Iceland’s Research resources: the Health Sector Databases, Genealogy Databases and Biobanks, 2004, at 〈http://grants.nih.gov/grants/icelandicresearch.pdf〉 (Apr. 30, 2011) and M. Fortun, Promising genomics. Iceland and decode Genetics in a World of Speculation, Berkeley/Los Angeles/London, 2008.

  20. 20.

    R. Anderson - I. Brown - T. Dowty - P. Inglesant -W. Heath - A. Sasse, Database State, supported by Joseph Rowntree Reform Trust Ltd., Mar. 2009, at http://www.jrrt.org.uk/uploads/database-state.pdf (Apr. 30, 2011).

  21. 21.

    〈http://www.npia.police.uk/en/10508.htm〉 (Apr. 30, 2011).

  22. 22.

    Home Office, Strategic Action Plan for the National Identity Scheme: Safeguarding your Identity, London, 2006

  23. 23.

    〈http://www.ukbiobank.ac.uk〉 (Apr. 30, 2011).

  24. 24.

    As regards the access to health repositories by police, see the case of Wellcome Trust, that in 2001 introduced a policy on access to sequence database resources provided by Celera Genomics, known as “the Celera Discovery System”, at 〈http://www.wellcome.ac.uk/Managing-a-grant/Startinga-grant/WTD005844.htm〉(Apr. 30, 2011).

  25. 25.

    A blood sample is taken from a heel prick of babies shortly after birth to test for a number of conditions which has resulted in comprehensive collections of stable blood samples. The Guthrie Card system was originally devised to test for PKU (Phenylketonuria, an easily curable enzyme disorder) and is now a routine feature of modern healthcare systems.

  26. 26.

    New Zealand High Court Decision in the case Hv.G (2000) 18 FRNZ 572, where the police had access to a PKU collection in order to solve a murder case.

  27. 27.

    S. Warren - L.D. Brandeis, The right of privacy, Harv. L. Rev., 1890, 4, 193.

  28. 28.

    The right not to know is mentioned in the Convention for the protection of Human Rights and dignity of the human being with regard to the application of biology and medicine, Oviedo, 1997 (art. 10, n. 2) and within UNESCO Universal Declaration on the Human Genome and Human Rights, 1997 (art. 5).

  29. 29.

    E. Stefanini, Dati genetici e diritti fondamentali. Profili di diritto comparato ed europeo, Padova, 2008, p. 13.

  30. 30.

    G.J. Annas, Privacy Rules for DNA Databank: protecting coded “future diaries” 270 J. Am. Med. Ass., 1993, p. 2345.

  31. 31.

    The relevance of biological group appears in the Document on Genetic Data (Mar. 17, 2004), enacted by ARTICLE 29 Data Protection Working Part and in Memorandum of the Recommendation (97) 5 of the Council of Europe, point 38.

  32. 32.

    A. Santosuosso, Genetica, diritto e giustizia: un futuro già in atto, in A. Santosuosso–C.A. Redi–S. Garagna–M. Zuccotti (eds.), I giudici davanti alla genetica, Como - Pavia, 2002, p. 22.

  33. 33.

    See art. 90, Decreto Legislativo n. 196/2003. See also: 〈http://www.garanteprivacy.it/garante/doc.jsp?ID=28335〉 (Apr. 30, 2011) and General authorization to the processing of genetic data of the Italian Guarantor for the protection of personal data, Feb. 22, 2007.

  34. 34.

    Authorization of the Italian Guarantor for the Protection of Personal Data n. 2, 1999 on the processing of data regarding health and sex life.

  35. 35.

    Resolution A 2-327/88, Mar. 16, 1989.

  36. 36.

    R. Williams–P. Johnson, Inclusiveness, Effectiveness and Intrusiveness: Issues in the Developing Uses of DNA Profiling in Support of Criminal investigations, Journ. L. Med. Eth., 34: 2, 2006, p. 235.

  37. 37.

    L. Chieffi, Ingegneria genetica e valori personalistici, in L. Chieffi (eds.), Bioetica e diritti dell’uomo Milano, 2000, p. 85.

  38. 38.

    C. Casonato, La discriminazione genetica: una nuova frontiera nei diritti dell’uomo?, in Atti del XV Convegno AIDC, Messina–Taormina, 2001, p. 2.

  39. 39.

    R.C. Lewontin, The confusion over cloning, 44 N.Y. Rev. Books, 16, Oct. 23, 1997, p. 18.

  40. 40.

    S.A. Cole, Fingerprint Identification and the Criminal Justice System, in D. Lazer (eds.), DNA and the Criminal Justice System - The Technology of Justice, Massachusetts - England, 2004, p. 70.

  41. 41.

    J.D. Watson–A. Berry, DNA, il segreto della vita, Milano, 2004, p. 297.

  42. 42.

    J. Kaye, Police collection and access to DNA samples, 2 (1) Gen., Soc. and Pol., 2006, p. 16–27.

  43. 43.

    USA National Institute of Health website at〈http://grants1.nih.gov/grants/policy/coc/background.htm〉 (Apr. 30, 2011).

  44. 44.

    EGE, Opinion n. 20 on the ethical aspects of information and communication technologies (ICT) implants in the human body, Mar. 16, 2005.

  45. 45.

    See, for example, Italian Guarantor for the protection of personal data (S. Rodotà), Annual Report, May 8, 2011, at 〈http://www.garanteprivacy.it/garante/document?ID=35366〉 (Apr. 30, 2011).

References

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  2. K. Conger, Study first to analyze individual’s genome for risk of dozens of diseases, potential responses to treatment, Apr. 29, 2010, at http://med.stanford.edu/ism/2010/april/genome.htmlgt: (Apr. 30, 2011 ).

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  3. A. Jeffreys - V. Wilson - S. Thein, Individual-specific ‘fingerprints’ of human DNA, Nat., Jul. 4–10, 1985, 316 (6023): 76–9.

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  4. P. Wintour, Blair urges police to exploit growing DNA database, The Guard., Oct. 23, 2006, at http://www.guardian.co.uk/politics/2006/oct/23/ukcrime.immigrationpolicygt: (Apr. 30, 2011).

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  5. B. Lambert, Giuliani Backs DNA Testing of Newborns for Identification, New York Times, Dec. 17, 1998, at http://www.nytimes.com/1998/12/17/nyregion/giuliani-backs-dna-testing-of-newborns-for-identification.htmlgt: (Apr. 30, 2011 ).

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  7. R. Anderson - I. Brown - T. Dowty - P. Inglesant -W. Heath - A. Sasse, Database State, supported by Joseph Rowntree Reform Trust Ltd., Mar. 2009, at http://www.jrrt.org.uk/uploads/database-state.pdf (Apr. 30, 2011).

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  8. Home Office, Strategic Action Plan for the National Identity Scheme: Safeguarding your Identity, London, 2006

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  9. S. Warren - L.D. Brandeis, The right of privacy, Harv. L. Rev., 1890, 4, 193.

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  10. E. Stefanini, Dati genetici e diritti fondamentali. Profili di diritto comparato ed europeo, Padova, 2008, p. 13.

    Google Scholar 

  11. G.J. Annas, Privacy Rules for DNA Databank: protecting coded “future diaries” 270 J. Am. Med. Ass., 1993, p. 2345.

    Article  Google Scholar 

  12. A. Santosuosso, Genetica, diritto e giustizia: un futuro già in atto, in A. Santosuosso–C.A. Redi–S. Garagna–M. Zuccotti (eds.), I giudici davanti alla genetica, Como - Pavia, 2002, p. 22.

    Google Scholar 

  13. R. Williams–P. Johnson, Inclusiveness, Effectiveness and Intrusiveness: Issues in the Developing Uses of DNA Profiling in Support of Criminal investigations, Journ. L. Med. Eth., 34: 2, 2006, p. 235.

    Google Scholar 

  14. L. Chieffi, Ingegneria genetica e valori personalistici, in L. Chieffi (eds.), Bioetica e diritti dell’uomo Milano, 2000, p. 85.

    Google Scholar 

  15. C. Casonato, La discriminazione genetica: una nuova frontiera nei diritti dell’uomo?, in Atti del XV Convegno AIDC, Messina–Taormina, 2001, p. 2.

    Google Scholar 

  16. R.C. Lewontin, The confusion over cloning, 44 N.Y. Rev. Books, 16, Oct. 23, 1997, p. 18.

    Google Scholar 

  17. S.A. Cole, Fingerprint Identification and the Criminal Justice System, in D. Lazer (eds.), DNA and the Criminal Justice System - The Technology of Justice, Massachusetts - England, 2004, p. 70.

    Google Scholar 

  18. J.D. Watson–A. Berry, DNA, il segreto della vita, Milano, 2004, p. 297.

    Google Scholar 

  19. J. Kaye, Police collection and access to DNA samples, 2 (1) Gen., Soc. and Pol., 2006, p. 16–27.

    Google Scholar 

  20. EGE, Opinion n. 20 on the ethical aspects of information and communication technologies (ICT) implants in the human body, Mar. 16, 2005.

    Google Scholar 

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Authors and Affiliations

  1. University of Trento, Italy

    Ilaria Anna Colussi (PhD candidate in Public Law)

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  1. Ilaria Anna Colussi
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Editors and Affiliations

  1. Department of Juridical Sciences, University of Ferrara, Italy

    Roberto Bin , Sara Lorenzon  & Nicola Lucchi ,  & 

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Colussi, I.A. (2012). Towards a Genetic Registry Office?. In: Bin, R., Lorenzon, S., Lucchi, N. (eds) Biotech Innovations and Fundamental Rights. Springer, Milano. https://doi.org/10.1007/978-88-470-2032-0_21

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