Genetic data andor data protection

1
Genetic data and/or data protection?

• Dr. Attila Péterfalvi
• Spring Conference of
• European Data Protection Authorities, Budapest
• 25 April, 2006

2
Goals

• Data protection of genetic data is one of the
  most important items data protection authorities
  are confronted with in these days.
• My aim is to give a general survey of data
  protection issues and to report on relevant cases
  in the given context.

3
Human Genome Sciences

• Huge scientific developments in the last decades.
• DNA profile analyses in the 1990s.
• Decoding of the human genome in 2001.
• Information not only about the patient, but
  simultaneously about all the family-members.
• Through collection of human samples such as
  blood, hair, drivel.

4
Data protection as heel of Achilles?

• Coordination of various interests
• patient (privacy interest!)
• relatives
• researcher
• society and public health
• private companies

5
Need of correct regulation

• 2004 the Ministry of Health prepared the draft
  of the Act on the Protection of Genetic Data
• - correct definitions
• right of informational self determination
• consent given to research purposes
• rights of the close relatives
• Bio-banks
• strict prohibition of employers-usage

6
Present situation

• Unfortunately the draft of the Act was not
  promulgated
• General rules of the 1992 Data Protection Act and
  the sectoral regulation of the 1997 Medical Data
  Protection Act

7
Concrete cases

• International bio-banks (U.K., Switzerland,
  Germany)
• Hungary
• 1.fatherhood-tests
• 2. Act LXXXV. of 1999 on Penal Register and
  Certificate of No Criminal Record

8
Conclusions

• Genetic data are super sensitive data
• perfect identifiers
• extensive information
• unpredictable future usage (incalculable
  scientific development)
• - danger of privacy injures!

9
Thank you for your attention!