Legal, social, ethical,

cultural and economic

issues

1. Information, values and beliefs

We need to recognise the relationship between information, values and beliefs

•How was information constructed in the past? •How do we filter information?•How do our values and beliefs affect how we access, use and store information?• How does information construct our identity? Eg Facebook: audiences, surveillance

Information bias

– In the past, information tended to reflect white heterosexual, able bodied researchers who rarely reflected on how their own identities impacted research (Berger and Kitzinger, 1999)

– Information tends to reflect the author, even if the word ‘I’ has been avoided in the writing

– Information can also reflect the interests of funders and governments

– Information is never free from bias

2. Economic issues

•It costs to store information and this can impact how longyou have access to studies

•Research also costs which means when there are cuts to funding, the quality of research is affected. Researchers might also present research in a way that gives them more political influence and more funding. They might also find themselves paid to prove changes in practice• A good example to this are boot camps as an ‘effective’ intervention

•Multi-Systematic Reviews work well as a check for practitioners as they review all studies (but can be biased towards scientific methods)

Economic issues cont’d

• Other costs on information include but are not limited to:

• Technology

• Money talks: media, marketing, corporations

• Business vs free speech eg Google and China

• Training

3. Cultural issues

Cultural (broad definition) considerations centre around how information is:•transmitted •collected•used•disseminated

Cultural politics: Prejudice, discrimination and racism can be perpetuated by information

Comparative colonialisms (1980) (Cram 2002)COLONIALISMMANIFESTED BY:

POLITICAL COLONIALISM SCIENTIFIC/RESEARCH COLONIALISM

1. Removal ofWealth

Exportation of raw materialsand wealth from colonies forthe purpose of “processing” itinto manufactured wealthand/or goods.

Exporting raw data from acommunity for the purpose of“processing” it intomanufactured goods (i.e.,books, articles, wealth, etc.)

2. Right of Access Colonial Power believes ithas the right of access anduse for its own benefitanything belonging to thecolonised people.

Scientist believes s/he hasunlimited right of access toany data source and anyinformation belonging to the subject population.

3. External PowerBase

The centre of power andcontrol over the colonised islocated outside the colonyitself.

The centre of knowledge and information about a people or community is located outside ofthe community or peoplethemselves.

Cultural challenges to the Scientific method

– I am aware some quarters of the academic world will demand proof and corroborate evidence . I have none other than the fact that I am Samoan (Wendt, 1984)

– Whoever controls research, controls knowledge (Maaka, 1999)

– If the information of knowledge that comes out of the project is misused, it is them, not the study investigators who have to return to those communities and face the consequences” (Crengle and McCreanor, 2006)

Treaty implications

1.Partnership

refers to an ongoing relationship between those who have information and others

Participation

a principle which emphasises positive Mäori involvement in all decisions around information use

Protection

the principle whereby the Crown is obliged to actively protect Mäori interests, including information

Information and the Treaty of Waitangi (Professional competencies)

Beliefs:

1. Commitment to Te Tiriti o Waitangi

1. Supporting Maori rights, authority and status

2. Ensuring cultural safety

3. Self-determination by Maori to own pathways of healing

Professional competencies cont’d

Knowledge:

1. Knowledge of Te Tiriti o Waitangi

2. Describe social and historical factors affecting Maori

1. Understand rights of tangata whenua

2. Can describe impact of colonisation

3. Can describe social and economic factors affecting Maori

Feminist perspectives

Feminist perspectives questions socialisation and power structures. It is an approach that is primarily about experience and empowerment. It analyses the cultural and class assumptions that may influence information about women. It explores how information is used and dissemination that often perpetuates oppression and inequity. It alerts us to marginalisation or anthologising of all minority (not just women) groups’ experience and challenges assumptions.

Implications for information use etc

• Partnership, protection and participation• Motivation for and selection of questions carefully

chosen• Purpose is critical and political • Research is non-hierarchical• Herstory(womyn’s stories ) are important• Share power in the methods and analysis• The importance of acknowledging bias

Disability and information

– Social model of disability– Who is a “knower”?– Who are the experts? No homogenous group – Lived experience of disability – Researchers often come from a sympathy point

of view– Research must transform and is “emancipatory”– Enabling not disabling

Implications for information use etc

•Make sure it doesn't discriminate further

•Power of words, verbatim useful in research and writing

•Recruitment in research; a consumer group can’t speak for all

•Ask: is disabled researcher powerful?

•Move beyond medical models of anaylsis to what really matters

Gay community

– Queer research 10 years old

– Gay/lesbian/transgender traditionally framed through Western eyes of pathology

– Suppressed history

– Language important eg transgender is transported from dominant culture

– Have reclaimed label

– Strong political, cultural and social group

Ethnic communities

• Traditionally research done “on” ethnic groups • Information gleaned from research findings: Who

owns the findings?• It is ethically responsible to give feedback

“Repeatedly in my research I have met people participating in research previously and not receiving feedback about the outcomes. This experience frequently makes people reluctant to be involved in other research” (Oliver, 1996.

4. Ethical issues

– Codes of Ethics (DAPAANZ, NZAC, NZCCA, Ara Taiohi)

– Power to manipulate and transform information

– Use of names, faces etc

– Consent process

– Accessibility-web design etc

– Can we trust sources? Can we advise clients based on information we gather?

Ethics: what is right and correct

Often an objective set of criteria (Code of Ethics)

Information moves faster than rules can be formulated to govern it, how information is used may be left up to you with the guidance of your personal ethics

Informed consent

• Two central aspects:- Disclosure & free consent.• Origins of informed consent.• Informed consent requires a consent that is competent,

knowing, and voluntary (Gillick 1985)• The process of informed consent:- ongoing.- Includes a discussion of the limits of confidentiality.- Organisational examples of ‘your health information, your

rights’

Are there limits to confidentiality?

Limits to confidentiality are…..

• Harm to self• Harm to others• Harm from others• Children/elderly• Court orders

• Confidentiality is discussed at the beginning and reviewed/reminded regularly (if required)

• Eg: confidentiality forms in agencies

Duty to warn/protect – over-rides confidentiality

•Self

•Others

•From others

How do we decide on this?

5. Social issues

Rate of technological advances

Information (especially technology) to lift people out of poverty

Implications for the increase use of Social Media eg Twitter, Facebook

Media and personal invasion etc

Social construction of information

Sociology of how information is disseminated eg, whose interest is being served?

Consider

• How has the internet contributed to the democratization of knowledge production?

• Should internet access in third world countries take priority over wealth creation?

• How does the speed of information contribute to strengthening or challenging of the social order? Eg Arab Spring

• Does filtering or monitoring software on computers assist with the social good or is it invasive ?

6. Legal issues

– Code of Rights

– Privacy Act (and Health Information Privacy Code )

– Release of Information

– Copyright

a. Code of Rights (1996)

•Legislation includes provision of rules around information: confidentiality, informed consent

•Code should be displayed in all health and disability agencies

•Provision of a Disability Commissioner and Health and Disability Advocates

b. The Privacy Act (1993)

• The Act is primarily concerned with good personal information handling practices• The Act contains twelve information privacy principles dealing with collecting,

holding, use & disclosure of personal information & assigning unique identifiers • The principles give individuals the right to access personal information and to

request correction of it • The Privacy Act provided for provision of a Privacy Commissioner

12 principles

Principle 1, Principle 2, Principle 3 & Principle 4 govern the collection of personal information. This includes the reasons why personal information may be collected, where it may be collected from and how it is collected

Principle 5 governs the way personal information is stored. It is designed to protect personal information from unauthorised use or disclosure

Principle 6 gives individuals the right to access information about themselves

Principle 7 gives individuals the right to correct information

about themselves.

Principle 8, Principle 9, Principle 10 and Principle 11 place restrictions on how people & organisations can use or disclose personal information. These include ensuring information is accurate & up-to-date, & that it isn’t improperly disclosed

Principle 12 governs how “unique identifiers” – such as IRD numbers, bank client numbers, driver’s licence and passport numbers – can be used.

c. Health Information Privacy Code (1994)

– This code sets specific rules for agencies in the health sector to better ensure the protection of individual privacy. The code addresses the health information collected, used, held and disclosed by health agencies.

(i)Legal requirements for collecting and using information Consent

Ethics approval for research

•Copyright Rules at a glance:

Copyright law defines "fair use" for copying for the purpose of criticism, review, news reporting, research or private study.

Covered by WelTec licence

Plagarism

• Plagiarism rules at a glance:

Wrongful appropriation," "close imitation," or "purloining and publication" of another authors "language, thoughts, ideas, or expressions," and the representation of them as one's own original work