genetic testing: issues of policy & regulation jennifer molina supervised by: rosemary du...

GENETIC TESTING:GENETIC TESTING:Issues of Policy & Issues of Policy &

RegulationRegulation

Jennifer MolinaJennifer MolinaSupervised by: Rosemary Du Supervised by: Rosemary Du

PlessisPlessisSSRC Summer Studentship 2004/5SSRC Summer Studentship 2004/5

OverviewOverview

Project descriptionProject description MethodologyMethodology Project OutcomesProject Outcomes Policy DocumentsPolicy Documents Focus Group TranscriptsFocus Group Transcripts Academic LiteratureAcademic Literature Genetic Testing: Privacy Issues in Aotearoa Genetic Testing: Privacy Issues in Aotearoa

New Zealand*New Zealand* Benefits of doing an SSRC studentshipBenefits of doing an SSRC studentship

Genetic Privacy: Key IssuesGenetic Privacy: Key Issues

Following on from 2003/4 Following on from 2003/4 Studentship…Studentship…

International PolicyInternational Policy Why Aotearoa New Zealand is Why Aotearoa New Zealand is

DifferentDifferent Looking beyond what has been Looking beyond what has been

writtenwritten

MethodologyMethodology

The TRIANGULATION approach:The TRIANGULATION approach: 16 Focus Group Transcripts16 Focus Group Transcripts Policy DocumentsPolicy Documents Academic MaterialAcademic Material

Project OutcomesProject Outcomes

SummariesSummaries UK White Paper Follow-upUK White Paper Follow-up Index for Index for Constructive ConversationsConstructive Conversations

Participants’ Information BookletParticipants’ Information Booklet Academic Paper*Academic Paper*

““Genetic Testing: Privacy Issues in Genetic Testing: Privacy Issues in Aotearoa New Zealand”Aotearoa New Zealand”

Policy Documents: An OverviewPolicy Documents: An Overview

CANADACANADA: : Selected Legal Issues in Genetic Selected Legal Issues in Genetic Testing: Guidance from Human Rights Testing: Guidance from Human Rights (October 2001)(October 2001)

AUSTRALIAAUSTRALIA: : Essentially Yours: The Essentially Yours: The Protection of Human Genetic Information Protection of Human Genetic Information in Australia in Australia (March 2003)(March 2003)

UKUK: : Our Inheritance, Our Future: Realising Our Inheritance, Our Future: Realising the Potential of Genetics in the NHS the Potential of Genetics in the NHS (June (June 2003)2003)

NEW ZEALANDNEW ZEALAND: : Molecular Genetic Testing Molecular Genetic Testing in New Zealandin New Zealand (September 2003) (September 2003)

Focus Groups & NVIVOFocus 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 wordsSearching for key words Discourse AnalysisDiscourse Analysis

What did people say?What did people say? Concerns, fears, beliefs…Concerns, fears, beliefs…

Academic LiteratureAcademic Literature

Journals, Databases & Online News Journals, Databases & Online News MediaMedia

What has been written?What has been written? InsuranceInsurance EmploymentEmployment Family LawFamily Law CrimeCrime Commercial InterestsCommercial Interests

What hasn’t been written?What hasn’t been written? New Zealand ContextNew Zealand Context

Genetic Testing: Privacy Issues in Genetic Testing: Privacy Issues in Aotearoa New ZealandAotearoa New Zealand

Overview of the NZ regulatory frameworkOverview of the NZ regulatory framework Ministry of Health – Ministry of Health – Review of the Review of the

Regulation of Human Tissue and Tissue-Regulation of Human Tissue and Tissue-based Therapies based Therapies (2004)(2004)

Existing legislationExisting legislation The Privacy Act 1993The Privacy Act 1993 Public Health & Disability Act 2000Public Health & Disability Act 2000 Health & Safety in Employment Act 1992Health & Safety in Employment Act 1992 Human Rights Act 1993Human Rights Act 1993

Insurance and liabilityInsurance and liability

Genetic Testing: Privacy Issues in Genetic Testing: Privacy Issues in Aotearoa New ZealandAotearoa New Zealand

The public perception of science & The public perception of science & riskrisk Ambivalence Ambivalence SkepticismSkepticism CynicismCynicism Issues of trustIssues of trust

AmbivalenceAmbivalence ““I think it’s an amazing opportunity to move the medical I think it’s an amazing opportunity to move the medical

and health people forward because I think one of the best and health people forward because I think one of the best things is to be able to prevent things from things is to be able to prevent things from happening….Although on the other side is the question of happening….Although on the other side is the question of once this information is out there who has access to it, once this information is out there who has access to it, when do they have access to it, is it controlled by when do they have access to it, is it controlled by legislation? Again, does that actually control information...”legislation? Again, does that actually control information...”

Jason in Jason in Business and professional group 2Business and professional group 2

““The reality is that it is here. It’s not going to go away and 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 there are positive points in terms of genetic testing and we should embrace those positive points. But there is that should embrace those positive points. But there is that access and that privacy and those issues. As I was saying I access and that privacy and those issues. As I was saying I don’t mind a professional that I authorise, knowing don’t mind a professional that I authorise, knowing everything about my genetic map, but I don’t want you to everything about my genetic map, but I don’t want you to know.”know.”

Jessica in Jessica in Business and professional group 2Business and professional group 2

ScepticismScepticism

““So you’ve got knowledge that So you’ve got knowledge that purports to be real, rock solid, purports to be real, rock solid, forever, truth…in the hands of people forever, truth…in the hands of people who are not very wise, and maybe who are not very wise, and maybe really badly motivated and it’s not a really badly motivated and it’s not a very good scenario, so I think that’s a very good scenario, so I think that’s a worry.”worry.”

Samantha in Samantha in Friendship network 2 (mid-Friendship network 2 (mid-career adults)career adults)

CynicismCynicism

““Yes this nice little quote in this thing Yes this nice little quote in this thing [gene futures ad] about: ‘No employers or [gene futures ad] about: ‘No employers or insurance companies will never be able to insurance companies will never be able to find out anything about you from these find out anything about you from these records.’ You know, pigs will fly.”records.’ You know, pigs will fly.”

Hannah in Business and professional Hannah in Business and professional group 1 group 1

““They don’t make laws and rules and They don’t make laws and rules and regulations about things until regulations about things until after after they they have had a bad example of it.”have had a bad example of it.”

Sierra in Sierra in High school students groupHigh school students group

Issues of TrustIssues of Trust ““And providing privacy can be assured, in other words it And providing privacy can be assured, in other words it

can’t be accessed later on by your employers or your can’t be accessed later on by your employers or your insurance company, I probably don’t have a problem with it. insurance company, I probably don’t have a problem with it. I mean that’s just mechanics; I mean there are lots of I mean that’s just mechanics; I mean there are lots of mechanisms already for ensuring privacy of information to mechanisms already for ensuring privacy of information to your doctor and that sort of thing.”your doctor and that sort of thing.”

Daniel in Daniel in Adult education group 1 (older adults)Adult education group 1 (older adults)

““I actually trust my medical professionals far more now than I actually trust my medical professionals far more now than I did when I was 13, 14, and that’s about having access to 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 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 a conversation about whatever’s wrong, so it’s not just them telling me or them doing things to me or instructing them telling me or them doing things to me or instructing me to do this or that and me blindly following along. But in me to do this or that and me blindly following along. But in general, that makes me trust the medical profession more, general, that makes me trust the medical profession more, because they are willing to engage in that kind of because they are willing to engage in that kind of conversation now.”conversation now.”

Rhea in Rhea in Friendship network 2 (mid-career adults)Friendship network 2 (mid-career adults)

What I gained from doing an What I gained from doing an SSRC Summer StudentshipSSRC Summer Studentship

Research Skills:Research Skills: Creating an IndexCreating an Index Working collaborativelyWorking collaboratively Learning new software (NVivo)Learning new software (NVivo) Database SearchingDatabase Searching Interloaning Interloaning Writing SkillsWriting Skills Time ManagementTime Management