21st July 2017, Volume 130 Number 1459

Katie Hoeksema, Richman Wee, Alastair Macdonald, Parry Guilford, Jesse Wall, Jon Cornwall

Digitisation of health data, including medical records and genomic information, is becoming common practice in many countries around the world. With this improvement in digital technology, a new phenomenon has…

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Summary

Digitisation and utilisation of large healthcare data sets is becoming increasingly common around the world, with such use leading to benefits in healthcare and disease prevention. The largest and arguably most important healthcare data set will become posthumous healthcare data sets. New Zealand is increasingly digitising and centralising healthcare records, and there would be benefit to utilising posthumous healthcare records for research and management purposes. However, there is a lack of clarity surrounding the regulatory control around such data sets, and therefore it is unclear how to best utilise such data for the benefit of all New Zealanders. This paper explores an issue which is becoming increasingly relevant to all New Zealanders.

Abstract

Ongoing improvements in digital data acquisition and storage has led to the phenomenon of e(lectronic)-mortality, where digital data can now exist for a potentially infinite period. Globally, many countries are facilitating the acquisition and researcher-led access to large-scale, population-based digitised healthcare data sets. Their utilisation has led to numerous positive advances in healthcare. New Zealand’s medical record system is becoming increasingly digitised, and as a consequence there will be an ever-increasing resource of posthumous healthcare data stored digitally, including genomic information. Such data could be utilised for research purposes, and developing such a consolidated resource could improve healthcare outcomes in our own nation and allow us to parallel global progress in healthcare research trends. This viewpoint article explores the issues surrounding, and potential for utilisation of, a national resource of posthumous digital healthcare data. Currently, there appear to be no legal barriers to the large-scale acquisition and utilisation of posthumous healthcare data in New Zealand, however, previous legislation may not have been developed with developments in technology or e-mortality in mind. Ethically, culturally and socially there are many challenges to address, including issues surrounding obtaining consent, respecting privacy, management of incidental findings, maintaining anonymity and ensuring community support for such a resource. Despite the potential for widespread health benefits that utilisation of posthumous healthcare data in this country may facilitate, wide and ongoing consultation is required to examine how such a precious resource can be enabled for the downstream benefit of all New Zealanders.

Author Information

Katie Hoeksema, Fifth Year Medical Student, School of Medicine, University of Otago, Wellington; Richman Wee, Project Manager and Researcher, Centre for Society, Governance and Science, Faculty of Law, University of Otago, Dunedin; Alastair Macdonald, Retired Renal Physician and Current Clinical Ethics Advisor, Capital and Coast District Health Board, Wellington; Parry Guilford, Department of Biochemistry, University of Otago, Dunedin; Jesse Wall, Senior Lecturer, Faculty of Law, University of Otago, Dunedin; Jon Cornwall, Programme Director and Senior Lecturer, Faculty of Health, Victoria University of Wellington, Wellington. 

Acknowledgements

KH was the grateful recipient of a summer student scholarship from the Centre for Society, Governance and Science at the University of Otago.

Correspondence

Jon Cornwall, Faculty of Health, Victoria University of Wellington.

Correspondence Email

jon.cornwall@vuw.ac.nz

Competing Interests

Miss Hoeksema reports grants from University of Otago Centre for Society, Governance and Science during the conduct of the study.

References

  1. Fehringer G, Kraft P, Pharoah PD, et al. Cross-cancer genome-wide analysis of lung, ovary, breast, prostate, and colorectal cancer reveals novel pleiotropic associations. Cancer Res. 2016; 76:5103–14. 
  2. Wain LV, Shrine N, Miller S, et al. Novel insights into the genetics of smoking behaviour, lung function, and chronic obstructive pulmonary disease (UK BiLEVE): A genetic association study in UK Biobank. Lancet Respir Med. 2015; 3:769–81. 
  3. Shungin D, Winkler TW, Croteau-Chonka DC, et al. New genetic loci link adipose and insulin biology to body fat distribution. Nature. 2015; 518:187–96. 
  4. Collins FS, Green ED, Guttmacher AE, Guyer MS. A vision for the future of genomics research. Nature. 2003; 422:835–47. 
  5. Winkler EC, Wiemann S. Findings made in gene panel to whole genome sequencing: Data, knowledge, ethics – and consequences? Expert Rev Mol Diagn. 2016; 1–12. 
  6. Kaye J, Boddington P, de Vries J, et al. Ethical implications of the use of whole genome methods in medical research. Eur J Hum Genet. 2010; 18:398–403. 
  7. Pui C-H, Yang JJ, Hunger SP, et al. Childhood acute lymphoblastic leukemia: Progress through collaboration. J Clin Oncol. 2015; 33:2938–48. 
  8. Ullman-Cullere MH, Mathew JP. Emerging landscape of genomics in the electronic health record for personalized medicine. Hum Mutat. 2011; 32:512–6. 
  9. Gharahkhani P, Fitzgerald RC, Vaughan TL, et al. Genome-wide association studies in oesophageal adenocarcinoma and Barrett’s oesophagus: A large-scale meta-analysis. Lancet Oncol. 2016; 17:1363–73. 
  10. Arnar DO, Andersen K, Thorgeirsson G. Genetics of cardiovascular diseases: Lessons learned from a decade of genomics research in Iceland. Scand Cardiovasc J. 2016; 1–6. 
  11. UK Biobank. Ethics and Governance Framework. UK; 2007. 
  12. Keis A. Biobanking in Estonia. J Law Med Ethics. 2016; 44:20–3. 
  13. Merz JF, McGee GE, Sankar P. “Iceland Inc.”?: On the ethics of commercial population genomics. Soc Sci Med. 2004; 58:1201–9. 
  14. Ministry of Social Affairs and Health. Biobank Act. Finland; 2012. 
  15. Official Journal of Acts Dziennik Ustaw. The Cell, Tissue and Organ Recovery, Storage and Transplantation Act. Poland; 2005. 
  16. Malanowski P, Antoszkiewicz K, Jakubowska-Winecka A, et al. Central Register of Objections for deceased donation in Poland 1996 to 2014: The country with an opting-out system. Transplant Proc. 2016; 48:1337–40. 
  17. Ministry of Justice. Privacy Act. New Zealand; 1993.
  18. Wilkinson TM. Last rights: The ethics of research on the dead. J Appl Philos. 2002; 19:31–41. 
  19. Boys MH. Health (Retention of Health Information) Regulations. New Zealand; 1996. 
  20. Ministry of Health. Standard Operating Procedures for Health and Disability Ethics Committees. New Zealand; 2014. 
  21. Privacy Commissioner. Health Information Privacy Code. New Zealand; 1994. 
  22. Stevens R. Medical record databases. Just what you need? New Zealand; 1998. 
  23. Fleming J, Critchley C, Otlowski M, et al. Attitudes of the general public towards the disclosure of individual research results and incidental findings from biobank genomic research in Australia. Intern Med J. 2015; 45:1274–9. 
  24. Choong KA, Bonnici JPM. Posthumous medical confidentiality. Eur J Comp Law Gov. 2014; 1:106–19. 
  25. Beskow LM. Lessons from HeLa Cells: The Ethics and Policy of Biospecimens. Annu Rev Genomics Hum Genet. 2016 Aug; 17:395–417. 
  26. Redfern M, Keeling J, Powell E. The report of the Royal Liverpool children’s inquiry. London; 2001. 
  27. National Ethics Advisory. Ethical guidelines for observational studies: Observational research, audits and related activities. New Zealand; 2012. 
  28. Dunedin Multidisciplinary Health and Development Research Unit. Dunedin Multidisciplinary Health & Development Study [Internet]. [Cited 2017 Jan 17] Available from: http://dunedinstudy.otago.ac.nz
  29. InternetNZ. Death and the internet. [Internet]. 2016 [Cited 2017 Jan 17]. Available from: http://internetnz.nz/event/death-and-internet
  30. Cornwall J, Slatter T, Print C, Guilford P, Henaghan M, Wee R. Culture, law, ethics, and social implications: Is society ready for advanced genomic medicine? Austral Med J. 2014; 7:200–2.

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