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The Bio-PIN: a concept to improve biobanking

Nature Reviews Cancer volume 11, pages 303–308 (2011)Cite this article

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Abstract

A new biobanking method is proposed, wherein samples and associated data would be deposited anonymously and labelled using a PIN code that is produced on the basis of personal biological characteristics, such as single nucleotide polymorphisms. The code would be the 'Bio-PIN' to uniquely distinguish the sample depositors, plus their samples and data. This method could help to diminish several long-discussed ethical, legal and societal problems in biobanking regarding privacy, informed consent, autonomy, data security and public trust.

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Figure 1: Biobanking with the Bio-PIN.
Figure 2: Data file and sample labelling with the Bio-PIN.

References

  1. Schaefer, G. O., Emanuel, E. J. & Wertheimer, A. The obligation to participate in biomedical research. JAMA 302, 67–72 (2009).

    Article  CAS  Google Scholar 

  2. Rodwin, M. A. The case for public ownership of patient data. JAMA 302, 86–88 (2009).

    Article  CAS  Google Scholar 

  3. Park, A. 10 ideas changing the world right now: Biobanks. TIME 173 Issue 11, 63 (2009).

    Google Scholar 

  4. Petrini, C. “Broad” consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose. Soc. Sci. Med. 70, 217–220 (2010).

    Article  Google Scholar 

  5. Murphy, J. et al. Public perspectives on informed consent for biobanking. Am. J. Public Health 99, 2128–2134 (2009).

    Article  Google Scholar 

  6. Lipworth, W., Morrell, B., Irvine, R. & Kerridge, I. An empirical reappraisal of public trust in biobanking research: rethinking restrictive consent requirements. J. Law Med. 17, 119–132 (2009).

    PubMed  Google Scholar 

  7. Allen, J. & McNamara, B. Reconsidering the value of consent in biobank research. Bioethics 25, 155–166 (2011).

    Article  Google Scholar 

  8. Secko, D. M., Preto, N., Niemeyer, S. & Burgess, M. M. Informed consent in biobank research: a deliberative approach to the debate. Soc. Sci. Med. 68, 781–789 (2009).

    Article  Google Scholar 

  9. da Rocha, A. C. & Seoane, J. A. Alternative consent models for biobanks: the new Spanish law on biomedical research. Bioethics 22, 440–447 (2008).

    Article  Google Scholar 

  10. Salvaterra, E. et al. Banking together. A unified model of informed consent for biobanking. EMBO Rep. 9, 307–313 (2008).

    Article  CAS  Google Scholar 

  11. Shickle, D. The consent problem within DNA biobanks. Stud. Hist. Philos. Biol. Biomed. Sci. 37, 503–519 (2006).

    Article  Google Scholar 

  12. Maschke, K. J. Alternative consent approaches for biobank research. Lancet Oncol. 7, 193–194 (2006).

    Article  Google Scholar 

  13. Hoeyer, K., Olofsson, B. O., Mjörndal, T. & Lynöe, N. The ethics of research using biobanks: reason to question the importance attributed to informed consent. Arch. Intern. Med. 165, 97–100 (2005).

    Article  Google Scholar 

  14. Knoppers, B. M. Biobanks: simplifying consent. Nature Rev. Genet. 5, 485 (2004).

    Article  CAS  Google Scholar 

  15. Maschke, K. J. Navigating an ethical patchwork — human gene banks. Nature Biotech. 23, 539–545 (2005); erratum 23, 896 (2005).

    Article  CAS  Google Scholar 

  16. Lunshof, J. E., Chadwick, R., Vorhaus, D. B. & Church, G. M. From genetic privacy to open consent. Nature Rev. Genet. 9, 406–411 (2008).

    Article  CAS  Google Scholar 

  17. Jenkins, M. et al. Integration of self-management tools in personal and provider e-health records. Stud. Health Technol. Inform. 146, 179–184 (2009).

    PubMed  Google Scholar 

  18. Meng, H. et al. Urban-rural differences in the effect of a medicare health promotion and disease self-management program on physical function and health care expenditures. Gerontologist 49, 407–417 (2009).

    Article  Google Scholar 

  19. Stinson, J., Wilson, R., Gill, N., Yamada, J. & Holt, J. A systematic review of internet-based self-management interventions for youth with health conditions. J. Pediatr. Psychol. 34, 495–510 (2009).

    Article  Google Scholar 

  20. Hansson, M. G., Dillner, J., Bartram, C. R., Carlson, J. A. & Helgesson, G. Should donors be allowed to give broad consent to future biobank research? Lancet Oncol. 7, 266–269 (2006).

    Article  Google Scholar 

  21. Boniolo, G., Di Fiore, P. P. & Pece, S. Trusted consent and research biobanks: towards a 'new alliance' between researchers and donors. Bioethics 17 May 2010 (doi:10.1111/j.1467-8519.2010.01823.x).

  22. Gurwitz, D., Fortier, I., Lunshof, J. E. & Knoppers, B. M. Children and population biobanks. Science 325, 818–819 (2009).

    Article  Google Scholar 

  23. Anderson, A. International team proposes new policies for population biobanks involving children. Genomeweb 13 Aug 2009.

  24. Henderson, M. Who should have access to children's DNA? Timesonline 13 Aug 2009.

  25. Vorhaus, D. Informed consent for pediatric biobanking. Genomics Law Report [online] (14 Aug 2009).

    Google Scholar 

  26. Dolgin, E. Child DNA donors should have their say. Nature 13 Aug 2009 (doi:10.1038/news.2009.819).

  27. Hansson, M. G. & Maschke, K. J. Biobanks: questioning distinctions. Science 326, 797 (2009).

    Article  CAS  Google Scholar 

  28. Brothers, K. B. & Clayton, E. W. Biobanks: too long to wait for consent. Science 326, 798 (2009).

    Article  CAS  Google Scholar 

  29. Hens, K., Wright, J. & Dierickx, K. Biobanks: oversight offers protection. Science 326, 798–799 (2009).

    Article  CAS  Google Scholar 

  30. P3G Consortium et al. Public access to genome-wide data: five views on balancing research with privacy and protection. PLoS Genet. 5, e1000665 (2009).

  31. Kaufman, D. J., Murphy-Bollinger, J., Scott, J. & Hudson, K. L. Public opinion about the importance of privacy in biobank research. Am. J. Hum. Genet. 85, 643–654 (2009).

    Article  CAS  Google Scholar 

  32. Hansson, M. G. Ethics and biobanks. Br. J. Cancer 100, 8–12 (2009).

    Article  CAS  Google Scholar 

  33. Ormond, K. E., Cirino, A. L., Helenowski, I. B., Chisholm, R. L. & Wolf, W. A. Assessing the understanding of biobank participants. Am. J. Med. Genet. A 149A, 188–198 (2009).

    Article  CAS  Google Scholar 

  34. Rothstein, M. A. Currents in contemporary ethics. Improving privacy in research by eliminating informed consent? IOM Report misses the mark. J. Law Med. Ethics 37, 507–512 (2009).

    Article  Google Scholar 

  35. Taylor, P. Personal genomes: when consent gets in the way. Nature 456, 32–33 (2008).

    Article  CAS  Google Scholar 

  36. My genome. So what? Nature 456, 1 (2008).

  37. Goffman, T. Genetic records threaten patients' privacy. Nature 457, 257 (2009).

    Article  CAS  Google Scholar 

  38. Ursin, L. O. Biobank research and the right to privacy. Theor. Med. Bioeth. 29, 267–285 (2008).

    Article  Google Scholar 

  39. Elger, B. S. & Caplan, A. L. Consent and anonymization in research involving biobanks: differing terms and norms present serious barriers to an international framework. EMBO Rep. 7, 661–666 (2006).

    Article  CAS  Google Scholar 

  40. Gottweis, H. & Zatloukal, K. Biobank governance: trends and perspectives. Pathobiology 74, 206–211 (2007).

    Article  CAS  Google Scholar 

  41. Evans, M. Ministry of Defence loses computer disc with 700,000 more personal records. The Times (Lond.) [online] (11 Oct 2008).

    Google Scholar 

  42. Police force loses memory stick. BBC News [online] (9 Mar 2009).

  43. Margasak, L. National Archives loses hard drive. The Washington Post [online] (20 May 2009).

    Google Scholar 

  44. Stein, R. Blood samples raise questions of privacy. Some samples are stored and used for research without parents' consent. The Washington Post [online] (30 Jun 2009).

    Google Scholar 

  45. Lee, L. M. & Gostin, L. O. Ethical collection, storage, and use of public health data: a proposal for a national privacy protection. JAMA 302, 82–84 (2009).

    Article  CAS  Google Scholar 

  46. Homer, N. et al. Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays. PLoS Genet. 4, e1000167 (2008).

    Article  Google Scholar 

  47. Casci, T. Technology: DNA has nowhere to hide. Nature Rev. Genet. 9, 733 (2008).

    Article  CAS  Google Scholar 

  48. Lowrance, W. W. & Collins, F. S. Ethics: Identifiability in genomic research. Science 317, 600–602 (2007).

    Article  CAS  Google Scholar 

  49. Gostin, L. O. & Nass, S. Reforming the HIPAA privacy rule: safeguarding privacy and promoting research. JAMA 301, 1373–1375 (2009).

    Article  CAS  Google Scholar 

  50. Nietfeld, J. J. What is anonymous? EMBO Rep. 8, 518 (2007).

    Article  CAS  Google Scholar 

  51. Sanchez, J. J. et al. A multiplex assay with 52 single nucleotide polymorphisms for human identification. Electrophoresis 27, 1713–1724 (2006).

    Article  CAS  Google Scholar 

  52. Jeffreys, A. J. Genetic fingerprinting. Nature Med. 11, 1035–1039 (2005).

    Article  CAS  Google Scholar 

  53. Jiang, B. et al. Application of HLA-DRB1 genotyping by oligonucleotide micro-array technology in forensic medicine. Forensic Sci. Int. 162, 66–73 (2006).

    Article  CAS  Google Scholar 

  54. Levadokou, E. N. et al. Allele frequencies for fourteen STR loci of the PowerPlex 1.1 and 2.1 multiplex systems and Penta D locus in Caucasians, African-Americans, Hispanics, and other populations of the United States of America and Brazil. J. Forensic Sci. 46, 736–761 (2001).

    CAS  PubMed  Google Scholar 

  55. Gilbert, H. & Handschuh, H. Security analysis of SHA-256 and sisters. in Lecture Notes in Computer Science Vol. 3006 (eds Matsui, M. & Zuccherato, R.) 175–193 (Springer, Berlin/Heidelberg 2004).

    Google Scholar 

  56. Kohane, I. S. et al. Medicine: Reestablishing the researcher–patient compact. Science 316, 836–837 (2007).

    Article  CAS  Google Scholar 

  57. Winickoff, D. E. & Winickoff, R. N. The charitable trust as a model for genomic biobanks. N. Engl. J. Med. 349, 1180–1184 (2003).

    Article  CAS  Google Scholar 

  58. Jones, E. HIPAA 'Protected Health Information': What Does PHI Include? HIPAA.com [online] (2009).

    Google Scholar 

  59. Johnsson, L., Hansson, M. G., Eriksson, S. & Helgesson, G. Opt-out from biobanks better respects patients' autonomy. BMJ 337, a1580 (2008).

    Article  Google Scholar 

  60. Kaufman, D., Murphy, J., Scott, J. & Hudson, K. Subjects matter: a survey of public opinions about a large genetic cohort study. Genet. Med. 10, 831–839 (2008).

    Article  Google Scholar 

  61. Wolf, S. M. et al. Managing incidental findings in human subjects research: analysis and recommendations. J. Law Med. Ethics 36, 219–248 (2008).

    Article  Google Scholar 

  62. Forsberg, J. S., Hansson, M. G. & Eriksson, S. Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results. Eur. J. Hum. Genet. 17, 1544–1549 (2009).

    Article  Google Scholar 

  63. Bovenberg, J., Meulenkamp, T., Smets, E. & Gevers, S. Biobank research: reporting results to individual participants. Eur. J. Health Law 16, 229–247 (2009).

    Article  Google Scholar 

  64. US Department of Commerce. Secure Hash Standards (SHS), FIPS PUB 180–3 [online] (Oct 2008).

  65. Roden, D. M. et al. Development of a large-scale de-identified DNA biobank to enable personalized medicine. Clin. Pharmacol. Ther. 84, 362–369 (2008).

    Article  CAS  Google Scholar 

  66. Gulcher, J. R., Kristjánsson, K., Gudbjartsson, H. & Stefánsson, K. Protection of privacy by third-party encryption in genetic research in Iceland. Eur. J. Hum. Genet. 8, 739–742 (2000).

    Article  CAS  Google Scholar 

  67. Schmidt, M. K., Vermeulen, E., Tollenaar, R. A., Van't Veer, L. J. & van Leeuwen, F. E. Regulatory aspects of genetic research with residual human tissue: effective and efficient data coding. Eur. J. Cancer 45, 2376–2382 (2009).

    Article  Google Scholar 

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Acknowledgements

The authors thank T. Caulfield for providing valuable help. The University Medical Center Utrecht, Department of Pathology, received funding from an Innovation Grant, awarded to INTRESCO Ltd, Maarssen, the Netherlands, by SenterNovem. The Department laboratory is acknowledged for its input. Study concept and design of figures 1 and 2 by J.J.N., who also devised the name Bio-PIN. All authors contributed to the writing of the manuscript, with J.J.N. coordinating.

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Authors and Affiliations

  1. J. J. Nietfeld is at the Department of Pathology, University Medical Center Utrecht, Heidelberglaan 100, Utrecht 3584CX, The Netherlands.,

    J. J. Nietfeld

  2. Jeremy Sugarman is at the Berman Institute of Bioethics and Department of Medicine, Johns Hopkins University, Baltimore 21205, Maryland, USA.,

    Jeremy Sugarman

  3. Jan-Eric Litton is at the Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm SE-171 77, Sweden.,

    Jan-Eric Litton

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Correspondence to J. J. Nietfeld.

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Competing interests

An international patent application has been filed by INTRESCO Ltd. J.J.N. has a potential future competing financial interest.

Supplementary information

Supplementary Information S1

Additional publications (Issued in 2009 and 2010, discussing ethical, legal and societal problems in biobanking) (PDF 161 kb)

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FURTHER INFORMATION

Biobanking and Biomolecular Resources Research Infrastructure

deCODE Genetics

Dossia Personal Health Platform

Google Health

International Society for Biological and Environmental Repositories

Microsoft HealthVault

Public Population Project in Genomics (P3G)

Vanderbilt BioVU DNA Databank

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Nietfeld, J., Sugarman, J. & Litton, JE. The Bio-PIN: a concept to improve biobanking. Nat Rev Cancer 11, 303–308 (2011). https://doi.org/10.1038/nrc3022

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