Panel Privacy in genomics

1
Panel Privacy in genomics

• Legal-ethical issues
• Mr. Corrette Ploem
• (dep. Public Health, Academic Medical Center
  Amsterdam)

2
Outline__________________________________________

• Legal-ethical issues related to the
  introduction of next generation sequencing (NGS)
• How NGS influences clinical care
• Some issues
• Legal-ethical issues related to new data
  processing techniques
• Some new developments
• Some issues

3
Legal-ethical issues related to the introduction
of NGS (1)_____________________________________

• How NGS influences clinical care
• Sequencing and storing patients DNA-code
  becomes standard procedure
• Tendency to extend scope of genetic testing to
  larger parts of genome or whole genome
• Availability of predictive genetic data on a
  large scale
• Storage of test results for long periods and
  accessibility for other care providers and
  researchers

4
Legal-ethical issues related to the introduction
of NGS (2)_____________________________________

• Some issues
• Reshaping informed consent
• Knowing/not-knowing future health risks (open
  future of children!)
• New responsibilities for physician, such as
  duty to re-contact
• Secondary use of data for research

5
Legal-ethical issues related to new data
processing techniques (1)________________________
_____________

• Some new developments
• National electronic patient records
• Cloud computing
• Large databases/data sharing (big data)

6
Legal-ethical issues related to new data
processing techniques (2) ________________________
_____________

• Some issues
• Who carries legal responsibility for data
  processing? (often unclear)
• Different privacy regimes (which law is
  applicable?)
• Difficulties with guaranteeing medical
  confidentiality and data security
• Increased threat of access by justice or
  security services, e.g. on basis of US-Patriot
  Act