'As Long as It's Used for Beneficial Things': An Investigation of non-Maori, Maori and Young People's Perceptions Regarding the Research use of the Aotearoa New Zealand Integrated Data Infrastructure (IDI).
J Empir Res Hum Res Ethics
; 17(4): 471-482, 2022 10.
Article
em En
| MEDLINE
| ID: mdl-35849389
ABSTRACT
The Aotearoa New Zealand Integrated Data Infrastructure (IDI) is a national database containing a wide range of data about people and households. There is limited information about public views regarding its use for research.A qualitative study was undertaken to examine the views of forty individuals attending a large hospital in Auckland, including those of Maori ethnicity and young people. Semi-structured interview data were analysed using Braun and Clarke's method of thematic analysis.Seven key themes emerged 1) Limited knowledge about medical data held in national databases; 2) Conditional support for the use of the IDI, including for research; 3) Concerns regarding the misuse of IDI data; 4) The importance of privacy; 5) Different views regarding consent for use of data for research; 6) Desire for access to personal data and the results of research; and 7) Concerns regarding third party and commercial use. Young people and those of Maori ethnicity were more wary of data misuse than others.Although there is reasonable support for the secondary use of public administrative data in the IDI for research, there is more work to be done to ensure ethical and culturally appropriate use of this data via improved consent privacy management processes and researcher training.
Palavras-chave
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Etnicidade
/
Havaiano Nativo ou Outro Ilhéu do Pacífico
Tipo de estudo:
Qualitative_research
Limite:
Adolescent
/
Humans
País/Região como assunto:
Oceania
Idioma:
En
Revista:
J Empir Res Hum Res Ethics
Assunto da revista:
ETICA
Ano de publicação:
2022
Tipo de documento:
Article
País de afiliação:
Nova Zelândia