1. GENETIC TESTING: Issues of Policy & Regulation Jennifer Molina Supervised by: Rosemary Du Plessis SSRC Summer Studentship 2004/5

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

3. Genetic Privacy: Key Issues Following on from 2003/4 Studentship… Following on from 2003/4 Studentship… International Policy International Policy Why Aotearoa New Zealand is Different Why Aotearoa New Zealand is Different Looking beyond what has been written Looking beyond what has been written

4. Methodology The TRIANGULATION approach: 16 Focus Group Transcripts 16 Focus Group Transcripts Policy Documents Policy Documents Academic Material Academic Material

5. Project Outcomes Summaries Summaries UK White Paper Follow-up UK White Paper Follow-up Index for Constructive Conversations Participants’ Information Booklet Index for Constructive Conversations Participants’ Information Booklet Academic Paper* Academic Paper* “Genetic Testing: Privacy Issues in Aotearoa New Zealand” “Genetic Testing: Privacy Issues in Aotearoa New Zealand”

6. Policy Documents: An Overview CANADA: Selected Legal Issues in Genetic Testing: Guidance from Human Rights (October 2001) 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) 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) 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) NEW ZEALAND: Molecular Genetic Testing in New Zealand (September 2003)

7. Focus Groups & NVIVO Why use focus groups? Why use focus groups? Why privacy issues? Why privacy issues? How do you analyse people’s talk? How do you analyse people’s talk? Searching for key words Searching for key words Discourse Analysis Discourse Analysis What did people say? What did people say? Concerns, fears, beliefs… Concerns, fears, beliefs…

8. Academic Literature Journals, Databases & Online News Media Journals, Databases & Online News Media What has been written? What has been written? Insurance Insurance Employment Employment Family Law Family Law Crime Crime Commercial Interests Commercial Interests What hasn’t been written? What hasn’t been written? New Zealand Context New Zealand Context

9. Genetic Testing: Privacy Issues in Aotearoa New Zealand Overview of the NZ regulatory framework Overview of the NZ regulatory framework Ministry of Health – Review of the Regulation of Human Tissue and Tissue-based Therapies (2004) Ministry of Health – Review of the Regulation of Human Tissue and Tissue-based Therapies (2004) Existing legislation Existing legislation The Privacy Act 1993 The Privacy Act 1993 Public Health & Disability Act 2000 Public Health & Disability Act 2000 Health & Safety in Employment Act 1992 Health & Safety in Employment Act 1992 Human Rights Act 1993 Human Rights Act 1993 Insurance and liability Insurance and liability

10. Genetic Testing: Privacy Issues in Aotearoa New Zealand The public perception of science & risk The public perception of science & risk Ambivalence Ambivalence Skepticism Skepticism Cynicism Cynicism Issues of trust Issues of trust

11. Ambivalence “I think it’s 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...” “I think it’s 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. It’s 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 don’t mind a professional that I authorise, knowing everything about my genetic map, but I don’t want you to know.” “The reality is that it is here. It’s 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 don’t mind a professional that I authorise, knowing everything about my genetic map, but I don’t want you to know.”  Jessica in Business and professional group 2

12. Scepticism “So you’ve got knowledge that purports to be real, rock solid, forever, truth…in the hands of people who are not very wise, and maybe really badly motivated and it’s not a very good scenario, so I think that’s a worry.” “So you’ve got knowledge that purports to be real, rock solid, forever, truth…in the hands of people who are not very wise, and maybe really badly motivated and it’s not a very good scenario, so I think that’s a worry.”  Samantha in Friendship network 2 (mid-career adults)

13. 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.” “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 don’t make laws and rules and regulations about things until after they have had a bad example of it.” “They don’t make laws and rules and regulations about things until after they have had a bad example of it.”  Sierra in High school students group  Sierra in High school students group

14. Issues of Trust “And providing privacy can be assured, in other words it can’t be accessed later on by your employers or your insurance company, I probably don’t have a problem with it. I mean that’s just mechanics; I mean there are lots of mechanisms already for ensuring privacy of information to your doctor and that sort of thing.” “And providing privacy can be assured, in other words it can’t be accessed later on by your employers or your insurance company, I probably don’t have a problem with it. I mean that’s 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 that’s about having access to knowledge isn’t it? I mean when I go to the GP we engage in a conversation about whatever’s wrong, so it’s 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.” “I actually trust my medical professionals far more now than I did when I was 13, 14, and that’s about having access to knowledge isn’t it? I mean when I go to the GP we engage in a conversation about whatever’s wrong, so it’s 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)

15. What I gained from doing an SSRC Summer Studentship Research Skills: Research Skills: Creating an Index Creating an Index Working collaboratively Working collaboratively Learning new software (NVivo) Learning new software (NVivo) Database Searching Database Searching Interloaning Interloaning Writing Skills Writing Skills Time Management Time Management