Government to reinstate prisoner voting ban

Source: NZ Music Month takes to the streets

The Government has agreed to reinstate a total ban on prisoner voting, Justice Minister Paul Goldsmith says.
“Cabinet’s decision will reverse the changes made by the previous government in 2020, which allowed prisoners serving sentences of less than three years to vote.
“Restoring prisoner voting was typical of the previous government’s soft-on-crime approach; we don’t agree with it.
“Citizenship brings rights and responsibilities. People who breach those responsibilities to the extent that they are sentenced to jail temporarily lose some of their rights, including the right to vote.
“The proposed change will establish a consistent approach to prisoner voting, regardless of the length of sentence.
“The Government is committed to restoring law and order, and part of the response is to place a greater emphasis on personal responsibility and accountability. 
“A total prison voting ban for all sentenced prisoners underlines the importance that New Zealanders afford to the rule of law, and the civic responsibility that goes hand-in-hand with the right to participate in our democracy through voting.
“The voting ban will be progressed as part of an electoral amendment bill announced in April and set for introduction later this year. 
“When prisoners have served their time, they will enjoy the full restoration of electoral rights. The Department of Corrections and the Electoral Commission currently coordinate to support prisoners with re-enrolment upon their release, and this work will continue.”
The ban will not be retrospective, meaning prisoners already serving sentences of less than three years at the time the ban comes into force before the 2026 General Election will retain the ability to vote. 
The voting ban will not apply to people detained on remand or serving sentences of home detention.

Tokomaru pop up kura

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Tokomaru Bay ākonga couldn’t get to school after Cyclone Gabrielle so their kaiako, Hoana Forrester, brought school to them.

For more than six weeks of Term 1 this year, Hoana’s large carport at her home was the classroom for about 15 tamaraki and rangatahi each day. They usually attend Tolaga Bay Area School, about 30kms south of Tokomaru Bay.

“On one side of Tokomaru Bay, between here and Tolaga Bay, our bridge broke and on the other side there was a huge landslide that totally wiped out the road, so we were absolutely isolated, there was no way to get in our out.”

During and immediately after the cyclone, Hoana was immersed in civil defence activities as she and her husband are volunteers.

“When I’d done what I needed to do for civil defence, I started thinking about our kids because we knew it wasn’t going to be a quick fix for the road. I had discussions with our principal and deputy principal, I got approval and we went from there.  

“We did a lot of journal writing every day and created a routine. It was great at my house. Luckily I’ve got a big carport so we could put couches in there and had a little library  – it was a really cool space.”

For the first two weeks, there was no electricity or wifi so ākonga created learning maps, reflected on themselves and set goals. “We tried not to put too much pressure on them, it was important to make sure they were okay and not anxious.”

Messages from Māori maramataka, the Māori lunar calendar, were extremely pertinent for discussions with ākonga about what was happening around their environment.

In the fourth week scrap books from the area school were helicoptered in. Hoana wrote learning tasks for each ākonga at the front of the books so they could work through their tasks. “I could then work freestyle and go where I needed to – I was the  cleaner, the bus driver,  the counsellor, and the cook.”

Hoana says a very exciting part of the pop up kura was having parents, retirees and others from the local community come and talk about their lives and careers. “It was amazing to have local people, people who ākonga might see every day but they don’t see them in that light, they don’t know that side of their lives, their career paths, so it was really really neat.”

From airline pilots to police officers, everyone was happy to come and talk to the class. “They had the time because they didn’t have anywhere to go, no-one could get in or out of Toko.”

Having daily connections with parents during this time was also special as when the students are at the area school they usually catch the bus. “They (parents) would enjoy talking about what the kids had learnt that day.” Set times for pop up school was 10am to 1pm. “But I’d still be trying to kick them out at 2pm.”

There were also activities in the evening sometimes. Hoana’s colleague, another secondary teacher, organised a fantastic outdoors programme, including star gazing and navigation activities. “One evening we gathered at the wharf about 6pm and we were still there until 9pm.”

Another colleague, a teacher aide, was awesome with ākonga with special needs.

An interesting aspect Hoana noticed was that some ākonga that the attendance of some ākonga, that was poor at the area school, improved at the pop up school. She suspects it was the whānau vibe. “The kids were aged from 7 to 16 and were at all levels but everyone was in there together and felt safe.”

Hoana says she is extremely grateful to the Tolaga Bay Area School leadership team who allowed her to set up the temporary kura.  “We have two primary schools in Tokomaru Bay and they could have easily said we had to set up a space within one of those schools but that wouldn’t have worked for us. Having three staff out put a lot of pressure on the other teachers at Tolaga Bay, they were just so  happy when we came back.”

Last modified on Tuesday, 25 July 2023 10:02

How should agencies deal with ‘empty-your-pocket’ requests?

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The most common complaints we investigate relate to individuals trying to access their personal information. Some of these requests are “empty-your-pocket” requests to the agency – in other words, requests for all the information held about the person concerned by the agency.

The requester is well within their rights to do this. But throughout our investigations we have seen the full spectrum of responses from agencies to these types of requests: some deal with the requests comprehensively; others leave a lot to be desired. Included below are some observations from the access complaints we have assessed.

The legal position

Principle 6

Principle 6 of Privacy Act says that individuals are entitled to have access to their personal information held by an agency. An agency can withhold personal information if one of the withholding grounds listed in the Act applies.

Principle 6 is a strong legal right. There is no limitation upon the extent of personal information which a person can request from the agency. If an individual wants to request everything the agency holds about them, they are free to do so.

What to consider when responding to these requests

Everything means everything

If a requester asks for all information about themselves, the agency needs to assess all the information it holds about the requester – obvious, right? Yet often we see agencies that initially say they have released all information to the requester but, when prompted by our Office to conduct some follow-up enquiries, are later able to locate more information. This suggests that their initial searches were not as thorough as they could have been.

Many agencies will have a designated file (or files) for the individuals that they deal with. In most cases it will not be sufficient for the agency to simply release that file in response to a ‘capture-all’ request. A request for all information held by an agency would by extension include information not necessarily on the individual’s file. The agency should ensure it checks its records for information it holds outside that individual’s file. This includes searching emails, written notes, and even employee memories.

It is important to note that when our Office notifies an agency of a complaint, it then opens up that agency to litigation risk. If we are not able to resolve the matter during an investigation, the complainant is free to take the matter up in the Human Rights Review Tribunal. Therefore, it is best practice for an agency to respond as meticulously as it can when it receives a request for all information to reduce the likelihood of the requester making a complaint to our Office in the first place. Put simply: do it once and do it well.

Ask: why do they want this information?

From a legal perspective, principle 6 is generally not concerned with why an individual wants their information. A person’s motivation for requesting information is only relevant in limited circumstances (for instance, where the requests may reach the threshold for vexatiousness, which is a ground whereby an agency can refuse an access request).

But from a practical perspective, the question of why an individual wants specific information should be at the forefront of the agency’s mind. Rather than attempting to respond to requests blindly, we encourage agencies to try and work with the requester. Can the requester clarify or specify the information they are after? Can you get more details to understand the context of the request? Asking these questions can help agencies to locate the information requested, or even narrow down the scope of the request so it is not too burdensome or time-consuming to respond to.

Transparency around the agency and its decisions

In our experience, many people who make these all-encompassing requests do so because of their lack of knowledge or lack of trust with the agency. Commonly the request is triggered by an event or decision made by the agency that takes the individual by surprise. The individual becomes suspicious of what actions the agency might take in the future, or they speculate about what information the agency holds.

These requests can be taxing for agencies to process, and often the information is not that helpful for the individual in the context of their dispute. There’s a lesson in here for agencies to be as transparent as possible when it makes decisions affecting people.

Utilise our Office

Our investigation of complaints is retrospective by nature. When we investigate, we assess how an agency has already responded to an individual. But this doesn’t mean that we cannot help agencies before this stage. If you are uncertain about how to respond to a request, feel free to contact our Office in the first instance – we are here to help.

Image credit: Request – via Blue Diamond Gallery under Creative Commons Licence

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Improper disclosure leads to ostracism, death

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The Human Rights Review Tribunal recently found that the Parole Board breached the Privacy Act when it disclosed an offender’s parole address, with tragic consequences.

Read the full decision: Tapiki and Eru v New Zealand Parole Board [2019] NZHRRT 5 (external link)

The Board agreed to release the offender from prison in large part because his mother, Ms Tapiki, committed to giving her son a fresh start. Ms Tapiki and her friend Ms Eru put careful thought and preparation into a plan to give the offender “a real chance for reintegration into the community and the best possible opportunity for a positive future,” according to the Tribunal decision.

As part of the plan, Ms Tapiki gave up her small flat and Ms Eru agreed to have the offender and Ms Tapiki live with her. A probation officer assessed and approved Ms Eru’s address and the Parole Board made living there a condition of the offender’s release.

The Board disclosed the offender’s release conditions to his victim, as the Parole Act requires. It redacted some information identifying Ms Tapiki, but it didn’t redact the parole address.

After the disclosure, Ms Tapiki and Ms Eru started receiving threats and somebody smashed their letterbox. The Department of Corrections had to move the offender to another town, where he had no support system. He later took his own life.

The Tribunal found that the Board had breached principle 11 by disclosing the parole address. The breach led to significant injury to Ms Tapiki and Ms Eru’s feelings, making it an interference with their privacy. The Tribunal awarded damages of $16,000 to Ms Tapiki and $12,000 to Ms Eru.

Testing the relationship between the Parole and Privacy Acts

When considering the parties’ cases and making its decision, the Tribunal looked at the extent to which the Parole Act overrides the Privacy Act.

The plaintiffs’ case

Ms Tapiki and Ms Eru claimed that disclosing the address breached principle 11 of the Privacy Act. Principle 11 prevents agencies from sharing personal information unless an exception applies.

The Parole Board’s arguments

The Board admitted that it should have redacted the address but argued that principle 11 didn’t apply in this case as per section 7(1) of the Privacy Act. Under section 7(1), nothing in principle 11 overrides other laws that allow or require an agency to share personal information.

The Board argued that section 50 of the Parole Act enabled it to share the information. Section 50(1) requires the Board to disclose offenders’ release conditions to victims. Section 50(2) lets it withhold information that would interfere with another person’s privacy. The Board claimed that these provisions overrode its obligations under principle 11 when disclosing offenders’ release conditions.

Applying the Privacy Act to the Parole Act

The Tribunal emphasised that the Board must apply sections 50(1) and 50(2) of the Parole Act together. This means the Board has “a duty to advise except where disclosing the condition would unduly interfere with the privacy of any other person.” It also noted that section 108(3) states that the Parole Board is subject to the Privacy Act.

The Tribunal’s interpretation of section 7(1) of the Privacy Act was that principle 11 still applies under other laws up to the point where it would lessen or impair those other laws.

The Tribunal found that, since the Parole Board didn’t exercise section 50(2) of the Parole Act, section 50(1) didn’t apply either. Therefore, privacy principle 11 governed the disclosure. This doesn’t lessen or impair section 50, because section 50 requires the Board to consider the privacy interests of other people.

Not applying principle 11 in cases where the Board ignores its section 50(2) obligations would leave a privacy protection “vacuum.” The Tribunal said that the way to avoid this is to recognise “that the intended effect of s 108(3) of the Parole Act and of s 7(1) of the Privacy Act is to ensure IPP 11 applies in all circumstances.” Specific provisions that authorise or require the Board to share personal information only override principle 11 when the Board actually applies them.

Image credit: ‘Parole’ by Nick Youngson CC BY-SA 3.0 ImageCreator

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Prisoner loses claim that his letters were unfairly withheld

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The Human Rights Review Tribunal has dismissed a claim by a prisoner that the Department of Corrections interfered with his privacy by withholding his outgoing prison mail.

The prisoner claimed the department’s actions were in breach of Privacy Act principles 1-4 and 9. He also said the department had breached principle 11 by disclosing the letters to Police.

The matters at issue depended on whether Corrections withholding of the prisoner’s mail was authorised under the Corrections Act and, in particular, whether the department had reasonable grounds to believe that releasing the letters was likely to prejudice the maintenance of the law.

Background

The prisoner was being held on remand for serious offences against his girlfriend and a police officer who attended the callout. While in prison, he wrote to his girlfriend. A police officer became concerned his letters were intended to get her to drop her charges against him. The officer emailed an intelligence officer at the prison and asked for copies of the letters being sent by the prisoner. As a result, the outgoing letters were sent to the Prison Intelligence Unit where they were held.

Soon afterwards, a prison intelligence officer emailed the police officer to say he had permission to provide him with a copy of one letter and a production order would be required for any other letters. Corrections would hold all the letters until a production order was presented.

Meanwhile, the prisoner, who was a prolific letter writer, became suspicious the Department was interfering with his outgoing letters. He had been told by his girlfriend that she had only received one letter from him. The prisoner complained to his prison unit manager. He said the interference with his mail made him angry, anxious, paranoid and upset.

At this stage, Police had yet to provide a production order, so the Department decided to release the mail to the intended recipients. However, the police officer obtained a production order a few days later and served it on the prison. From that time until the expiry date on the production order, the prisoner’s mail was forwarded to the police officer.

Complaint

The prisoner complained to our office that Corrections had breached six of the information privacy principles of the Privacy Act. In his statement, he said his mail:

  • had been collected unlawfully, in breach of principle 1
  • had been collected indirectly and covertly, in breach of principle 2
  • was collected without him being informed, in breach of principle 3
  • was collected unlawfully, in breach of principle 4
  • was retained without good cause, in breach of principle 9
  • was copied and retained and the disclosure of these copied letters breached principle 11.

Privacy Commissioner view

Section 7 of the Privacy Act says if another piece of law allows or requires personal information to be used in a specific way – that will override the general provisions of the Privacy Act.

We concluded that Corrections had not breached principles 1-4 and 9. The Department’s withholding of the letters was permitted under section 108 of the Corrections Act because it believed on reasonable grounds the correspondence was likely to prejudice the maintenance of the law.

Although we did not find an interference with privacy, we issued a certificate of investigation enabling the complainant to take the matter to the Tribunal, should he choose to do so.

Tribunal view

The prisoner then took his complaints in relation to principles 1-4 and 9, to the Tribunal.

The Tribunal agreed with our view about principles 1-4 and 9. It said the prisoner’s mail had been lawfully withheld under section 108 of the Corrections Act.

Section 108(1)(d)(v) is specific. It says a prison manager may withhold mail between a prisoner and another person if it is correspondence that the manager believes on reasonable grounds is likely to prejudice the maintenance of the law (including the prevention, detection, investigation, prosecution, and punishment of offences, and the right to a fair trial).

Based on the information it had received from Police, Corrections believed the prisoner was manipulative, that he had and would continue to try and get the victim to withdraw her complaint. The Police therefore wanted copies of any letters he sent. Despite the screened letters having appropriate content, The Tribunal found that the belief that they could have prejudiced the maintenance of the law remained reasonable.

The Tribunal said the application of section 108 of the Corrections Act and section 7 of the Privacy Act meant no interference with the prisoner’s privacy could be established and dismissed the claim.

Image credit: Letters To Post via Public Domain Pictures

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When can you withhold sensitive employment information?

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When a person makes a request for personal information, the agency responding to the request is entitled to withhold the information, if one of the exceptions to principle 6 of the Privacy Act applies.

One such exception is section 29(1)(b), which allows agencies to withhold “evaluative material”, if a promise was given to the individual that their identity and/or the information they provide would be kept in confidence.

Read section 29(1)(b)

Section 29(1)(b)

Section 29(1)(b) is often relied on by agencies in the employment context where, for example, people provide their opinion in confidence on a colleague’s performance or his or her suitability for a role. This can include pre-employment screening. The person’s opinion or reference is the evaluative material which can be withheld in such situations.

Case note: Man objects to pre-employment screening

A typical scenario might be a job applicant finds that he or she is unsuccessful. Often, applicants will go on to request a copy of any references provided as part of the application process. We will often find that s 29(1)(b) applies in these instances, as there has been a promise of confidentiality given to the person who provided the reference.  

In another complaint, a doctor sought information about an application process after he was not offered an interview for a specialist training programme. We found the specialist college could rely on section 29(1)(b) to withhold the names of his referees and the information they provided. We considered that it was evaluative material and that the referees had relied on a promise of confidentiality when they provided the information during the application process.

Case note: Man seeks information from application process

However, the College was not entitled to withhold the point values, which were numbers representing the overall value of each referee’s response, as the scoring did not identify the referee or give details about what he or she had said.

Other examples

In Director of Human Rights Proceedings vs New Zealand Institute of Chartered Accountants [2015] NZHRRT 54, an accountant requested comments made by peer reviewers in a review of his practice. The Tribunal decided that the NZICA was entitled to withhold the information under section 29(1)(b), saying:

“If the practice reviewers were aware that the information would or could be disclosed to the member concerned, their freedom to frankly record their evaluations and opinions would be undermined.”

Director of Human Rights Proceedings vs New Zealand Institute of Chartered Accountants [2015] NZHRRT 54

This case note discusses a situation where an employer interviewed other employees during an investigation into allegations of sexual harassment. The information was collected in order to determine whether the employee should be dismissed. We were satisfied that the information in the interviews was evaluative material and the employer was entitled to withhold it.

Case note: Employee complains former employer ignored request for employment details

As with all requests for personal information, agencies need to assess the information and the circumstances surrounding its collection when deciding whether they can rely on a Privacy Act exception.

Image by Helix84 [CC0], via Wikimedia Commons

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Make requested information understandable, says Tribunal

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Under the Privacy Act, individuals have a right to get access to their personal information. When an agency receives such a request, a recent decision by the Human Rights Review Tribunal shows the agency, where possible, must provide the information in a way that is meaningful and understandable to the requester.

The Tribunal said the Royal Australasian College of Surgeons (RACS) breached the Privacy Act in how it responded to a doctor’s request for personal information. A central issue was that the information was provided to the requester in a form which he could not decipher. 

Background

The doctor had applied for a place in a training programme to become an orthopaedic surgeon. He had applied to the programme repeatedly but had been unsuccessful each time. After his last bid, he made a request to see the personal information held about him by the RACS to understand why he had been rejected yet again.

Twenty working days elapsed. Eleven days later, the RACS responded and emailed the doctor’s personal file to him. Some documents were withheld from him.

Based on the documents provided to him, the doctor believed his application had been unfairly judged. He lodged an appeal with the RACS Appeals Committee and filed a complaint to the Office of the Privacy Commissioner about the withheld documents.

The RACS extended the deadline for the appeal process until the Privacy Commissioner investigation was completed. After our investigation was completed, RACS provided the doctor with information it had initially withheld from him – namely a table of referee scores. The scores formed part of the basis for his failed application.

The doctor said the referee scores were inconsistent with the verbal feedback he had received and were well below his previously achieved scores. There was little meaningful information to contextualise the scores. No information was provided to indicate what the scores had been marked out of, or whether they had been weighted.

The doctor said it was impossible for him to interpret or decipher the referee scores and to see if they had been correctly calculated.

At this stage, we were unable to reach a satisfactory resolution to the complaint and the doctor exercised his right to seek a ruling from the Tribunal.

Tribunal’s view: provide meaningful access

The Tribunal said an important feature of the case was that the personal information the doctor received from RACS could not be deciphered. The doctor hadn’t been given the formula, mechanism or “key” to help him understand how his referee scores were calculated.

The Privacy Act provides that personal information must be given in a form that can be understood (see section 42(1)(c) and (d)). Without such steps, it cannot be said that access to personal information had been given and an agency’s obligations had been met.

The Tribunal ordered the RACS to give the doctor the necessary information to make meaningful the scoring and assessment of his referee scores, such as the scoring mechanism or available formula, as well as the weighting and total points available to the referees in making their scores. This information was to be transparent, intelligible and easily accessible to the doctor.

Image credit: Steel black and white via Pixabay under Creative Commons Licence.

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Teaching profession best equipped to improve numeracy and literacy

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“We have a world leading curriculum and trained, qualified teachers who are best placed to know how to deliver that curriculum. All teachers know that one size does not fit all; tamariki and rangatahi learn in a range of different ways. If you really want to help every student achieve, make class sizes smaller, ensure that schools are well resourced and that teachers are fully supported, have time to reflect on their teaching,  and have top notch professional development.”

“Legislating how teachers should teach literacy and numeracy is a slippery slope and sets a worrying precedent. Today, it’s about how to teach reading and maths but who’s to say with future governments it won’t be about how to teach health, social studies or science?

Taking pedagogy (the method and practice of teaching) away from the profession and putting it in the hands of politicians is of serious concern. Doctors don’t have laws about how they treat patients day to day, lawyers don’t have laws about how they prosecute their clients’ cases; making laws about how teachers teach is the thin edge of the wedge.

Chris Abercrombie said secondary teachers support measures that help to have all students start secondary school with basic reading, writing and maths skills. “It’s good that the government is keen to explore ways to make this happen but legislating for it seems to be a step in a dangerous direction.”

Last modified on Monday, 21 August 2023 14:05

Photocopying proof of identity

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A man complained to us last year after staff took a copy of his driver’s licence as he checked in to a hotel. The complainant was surprised that staff copied his licence and they couldn’t tell him why they needed the copy or how long they would keep it for.

Hotels and other agencies often ask for ID and take a copy. But is it okay to do this under the Privacy Act?

Do you need to take a copy?

Principle 1 of the Privacy Act says you can only collect information if you need it for a lawful purpose. Your agency needs to ask itself this question for any information you collect from your customers, including their identification.

Unique identifiers (such as licence or passport numbers) also come with special rules. Principle 12(4) of the Act says you can’t require an individual to give you their unique identifier, such as a driver’s licence number, outside of the purposes in connection with which it was assigned or a directly related purpose.

If your agency needs to confirm that someone is who they say they are, then it’s probably reasonable to ask to see their identification, even if your business is not connected to the original purpose for assigning the identification (i.e. if you are not the agency that issued the identification, or a related agency, such as NZTA and Police with regard to driver licences).

But is it necessary to take a copy? We thought about this in a previous complaint in 2010 between a woman and her mobile phone company. In that case we agreed it was important for the agency to properly identify its customers, but we considered that sighting a customer’s identification fulfilled this purpose. We did not accept that it was necessary for the agency to also record the driver licence number or to take a photocopy. 

If you need a record, what will you keep and how long will you store it for?

If your agency decides it legitimately needs to take copies of customers’ identification, and it isn’t enough to simply sight it, the next question is how long you need to keep them. Your agency has obligations under principle 9 of the Act to keep personal information you collect for only as long as you have a lawful purpose to do so.

When agencies decide to store copies of identity information, they will need to keep it secure. Principle 5 of the Privacy Act says you must use reasonable security safeguards to protect against lose, unauthorised access, use, disclosure of misuse of the personal information.

The risk of harm if information is misused is particularly high with identity information. They can be used in fraud with extremely serious consequences, such as identity theft. Identity information cannot easily be changed or re-secured, unlike credit cards.

In many cases, you’ll only need to keep copies of identification for a very short time, especially if your agency has a short relationship with your customer. In addition, if you need to retain identity information, you should consider if it is possible to obfuscate or delete the unique identifier (such as driver’s license or passport number). This may aid compliance with principle 12 of the Privacy Act. It is also a step to take to mitigate the risk of misuse if identity information is lost or stolen.

There may be other laws which require certain classes of agencies to retain certain information for a set period of time. For example, the Anti-Money Laundering and Countering Financing of Terrorism Act 2009 requires financial institutions to keep identity and verification information for a period of at least five years after the end of that business relationship.

Are you explaining what you’re doing?

Whatever your identification practices, you need to be able to explain them to your customers. Principle 3 of the Act says when your agency collects personal information, you have obligations to let the person know a number of things, including the reason for collecting the personal information and what will happen to it.

To meet your obligations under principle 3, your frontline staff need to tell customers what they are doing with their identification when they hand it over. They should also be able to answer why they need it, whether they are taking a copy and how long your agency will keep it for.

If you need help training your staff on privacy, we have plenty of free resources you can use. Our Privacy ABC online module provides a quick overview of how to protect privacy when handling personal information. It can be done in 30 minutes.

All our online e-learning modules are available here.

So, in summary, when asking for a person’s identification document, ask yourself:

  • Does sighting an identification document verify the person’s identity?
  • What is my reason for taking a further step by making and keeping a copy?
  • If I decide I need to make and keep a copy, how long do I need to keep it for?
  • If I am keeping a copy as evidence of having seen the ID, should I obscure or delete details such as date of birth and ID number?
  • Have I informed the person I am making and keeping a copy?
  • Have I informed the person how long I will be keeping it for before disposing of it?

Image credit: New Zealand passport via Wikimedia Commons

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Home DNA tests and privacy

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Reviewed for relevance April 2025.

Since 2007, companies like 23andMe.com and Ancestry.com have made at-home DNA testing kits accessible to the masses. Through a simple online order, you can receive a kit, provide a saliva sample and return it to the company for analysis. Genetic data is highly sensitive given that, other than in the case of identical siblings, it is utterly unique to you.

Direct-to-consumer (DTC) genetic testing kits are billed as an inexpensive, non-invasive method of gaining personalised insights into your health, discovering distant family members and learning your genetic origins.

Some companies that sell DNA kits make dubious claims about what their tests can show and consumers who receive home DNA kits often sign onto opaque terms and conditions which allow their genetic information to be used in ways which would make most people deeply uncomfortable.  

According to recent estimates, some 26 million people across the globe have used DTC DNA kits. The largest provider of this services, Ancestry.com, stated that by May of this year they had examined 15 million DNA samples. New Zealanders have a higher rate of testing than people in many other nations. A spokesperson for Ancestry.com told Stuff in 2018 that he believed testing was popular in New Zealand because many Kiwis wished to “find some connection to a bigger story, a bigger sense of belonging to the world.”

How do these tests work?

Although there are many types of at-home DNA tests available, the most common one helps consumers link up with distant relatives and discover their genetic roots.

Human DNA is 99.9% identical in all people. The remaining 0.1 percent contains what are termed single-nucleotide polymorphisms (SNPs). SNPs account for all variation between people including our height, build, hair type, eye colour and so forth.

DTC DNA companies analyse samples collected from the public and compare the unique patterns of an individual’s SNPs to reference groups from around the globe. That comparison indicates how closely your pattern of SNPs resembles broad groups such as Western European, Northern African, East Asian and so forth. Once tests have been examined, consumers receive reports (such as the one below) which outline the percentage of their genes which seem to emerge from different countries.

Accuracy issues

Some experts have levelled criticism regarding the accuracy of take home DNA tests. Criticisms include that these companies generally don’t share their data, their methods are not externally validated and some consumers have submitted their DNA to multiple organisations and received back differing results. Such tests are perhaps best described as giving a probability of where your genes come from rather than a precise picture.

Many genetic markers may be found in multiple populations around the world. This means that trying to neatly categorise groups of people into groups like “European” or “West African” may gloss over massive intragroup variability. Experts argue that human genetic variation does not neatly fit into arbitrarily defined borders. Reporting from Vox highlighted that studies of DTC genetic testing showed that it  may in fact “reinvigorate age-old beliefs in essential racial differences.” In other words, help to reinforce the idea that there are fundamental differences between people of different skin colours.

A report received from 23andMe by Vox journalist Danush Parvaneh outlining the broad categories of his genetic background. Source: Vox YouTube Channel

Opaque terms of services and sharing results with law enforcement

Dr Andelka Phillips is a senior Lecturer at the University of Waikato’s Faculty of Law and a Research Associate at the Centre for Health, Law and Emerging Technologies (HeLEX) at University of Oxford. She has focused her research on the regulation of the direct-to-consumer (DTC) genetic testing industry. One of Dr Phillips’ main criticisms of the industry is the extremely long and complex terms of service that consumers must agree to as part of submitting their saliva samples.

Dr Phillips’ reviewed contracts for 71 of these companies which revealed some disconcerting clauses. Seventy-two percent of contracts included a clause allowing the company to alter terms (without the agreement of the consumer) with 28 contracts including a condition to alter terms at any time.  Nearly half of reviewed contracts allowed for disclosure of personal data or genetic data to third parties in certain circumstances.

Twenty-five percent of contracts permitted disclosure of DNA data to law enforcement. In 2019, it was revealed that FamilyTreeDNA, a company which had collected more than 1 million DNA samples, had been working with the FBI to investigate violent crime.

Privacy considerations associated with these tests

For users of DTC DNA kits, there are major privacy questions including: How long do these companies keep consumer’s genetic information? Who is the data shared with and for what purposes? And are you able to request for your information to be deleted from the company’s records?

Some companies in this industry have been explicit in stating their real motives for collecting people’s DNA. 23andMe, at their launch in 2007 told the San Francisco Chronicle: ““Once you have the [genetic] data, [the company] does actually become the Google of personalized health care.” Understanding variations in the human genome may assist with drug development and give DTC DNA companies valuable insights into the global pharmaceutical industry worth $1.2 trillion USD in 2018.  Drug-company giant, GlaxoSmithKline invested $300 million in 23andMe in 2018 with an eye to using the DNA company’s de-identified, aggregate customer data for drug research. As this Atlantic article noted, “you don’t make that kind of money selling $99 spit kits.”

Dubious tests conducted by some DTC DNA companies

The lack of regulation in the DTC DNA industry is apparent in the fact that some genetic testing companies offer to reveal information about people that there no scientific evidence they can deliver. Examples include tests that claim they can show whether your child has “language learning” genes, will possess innate football talent or even whether they are a “picky eater”. The evidence that DNA can reveal any of these traits is doubtful at best and more likely, completely misleading.

One savvy Canadian man decided to assess the accuracy of a Toronto-based DTC DNA lab which charged $250 dollars to conduct a check into your ancestry. He submitted three samples, two from himself and one from his girlfriend’s dog for analysis. The results he received showed that both he and Snoopy the chihuahua shared identical “indigenous” ancestry. It emerged that the tests were being used by some wealthy Canadians to fraudulently attain indigenous status and save money on some taxes.

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