GENETIC TESTING: Issues of Policy

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GENETIC TESTINGIssues of Policy Regulation

• Jennifer Molina
• Supervised by Rosemary Du Plessis
• SSRC Summer Studentship 2004/5

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Overview

• Project description
• Methodology
• Project Outcomes
• Policy Documents
• Focus Group Transcripts
• Academic Literature
• Genetic Testing Privacy Issues in Aotearoa New
  Zealand
• Benefits of doing an SSRC studentship

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Genetic Privacy Key Issues

• Following on from 2003/4 Studentship
• International Policy
• Why Aotearoa New Zealand is Different
• Looking beyond what has been written

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Methodology

• The TRIANGULATION approach
• 16 Focus Group Transcripts
• Policy Documents
• Academic Material

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Project Outcomes

• Summaries
• UK White Paper Follow-up
• Index for Constructive Conversations
  Participants Information Booklet
• Academic Paper
• Genetic Testing Privacy Issues in Aotearoa New
  Zealand

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Policy Documents An Overview

• CANADA Selected Legal Issues in Genetic Testing
  Guidance from Human Rights (October 2001)
• AUSTRALIA Essentially Yours The Protection of
  Human Genetic Information in Australia (March
  2003)
• UK Our Inheritance, Our Future Realising the
  Potential of Genetics in the NHS (June 2003)
• NEW ZEALAND Molecular Genetic Testing in New
  Zealand (September 2003)

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Focus Groups NVIVO

• Why use focus groups?
• Why privacy issues?
• How do you analyse peoples talk?
• Searching for key words
• Discourse Analysis
• What did people say?
• Concerns, fears, beliefs

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Academic Literature

• Journals, Databases Online News Media
• What has been written?
• Insurance
• Employment
• Family Law
• Crime
• Commercial Interests
• What hasnt been written?
• New Zealand Context

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Genetic Testing Privacy Issues in Aotearoa New
Zealand

• Overview of the NZ regulatory framework
• Ministry of Health Review of the Regulation of
  Human Tissue and Tissue-based Therapies (2004)
• Existing legislation
• The Privacy Act 1993
• Public Health Disability Act 2000
• Health Safety in Employment Act 1992
• Human Rights Act 1993
• Insurance and liability

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Genetic Testing Privacy Issues in Aotearoa New
Zealand

• The public perception of science risk
• Ambivalence
• Skepticism
• Cynicism
• Issues of trust

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Ambivalence

• I think its an amazing opportunity to move the
  medical and health people forward because I think
  one of the best things is to be able to prevent
  things from happening.Although on the other side
  is the question of once this information is out
  there who has access to it, when do they have
  access to it, is it controlled by legislation?
  Again, does that actually control information...
• ? Jason in Business and professional group 2
• The reality is that it is here. Its not going
  to go away and there are positive points in terms
  of genetic testing and we should embrace those
  positive points. But there is that access and
  that privacy and those issues. As I was saying I
  dont mind a professional that I authorise,
  knowing everything about my genetic map, but I
  dont want you to know.
• ? Jessica in Business and professional group 2

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Scepticism

• So youve got knowledge that purports to be
  real, rock solid, forever, truthin the hands of
  people who are not very wise, and maybe really
  badly motivated and its not a very good
  scenario, so I think thats a worry.
• ? Samantha in Friendship network 2 (mid-career
  adults)

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Cynicism

• Yes this nice little quote in this thing gene
  futures ad about No employers or insurance
  companies will never be able to find out anything
  about you from these records. You know, pigs
  will fly.
• ? Hannah in Business and professional group 1
• They dont make laws and rules and regulations
  about things until after they have had a bad
  example of it.
• ? Sierra in High school students group

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Issues of Trust

• And providing privacy can be assured, in other
  words it cant be accessed later on by your
  employers or your insurance company, I probably
  dont have a problem with it. I mean thats just
  mechanics I mean there are lots of mechanisms
  already for ensuring privacy of information to
  your doctor and that sort of thing.
• ? Daniel in Adult education group 1 (older
  adults)
• I actually trust my medical professionals far
  more now than I did when I was 13, 14, and thats
  about having access to knowledge isnt it? I mean
  when I go to the GP we engage in a conversation
  about whatevers wrong, so its not just them
  telling me or them doing things to me or
  instructing me to do this or that and me blindly
  following along. But in general, that makes me
  trust the medical profession more, because they
  are willing to engage in that kind of
  conversation now.
• ? Rhea in Friendship network 2 (mid-career
  adults)

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What I gained from doing an SSRC Summer
Studentship

• Research Skills
• Creating an Index
• Working collaboratively
• Learning new software (NVivo)
• Database Searching
• Interloaning
• Writing Skills
• Time Management